Tag Archive | EDS

Distraction Therapy, A Guest Post For AXIS Dance Company’s Awesome Blog, And Exciting New Business Ventures

I know it’s been a while, I’m sorry to leave anyone hanging, I did not intend to abandon my blog for so long. I have been very busy while I was away from writing, I promise! One of the last things I wrote before I went on hiatus this past summer has just been published, thanks to my brilliant friend Rebecca, as a Guest Post on AXIS Dance Company’s blog. The article I wrote covers the topic of distraction therapy in relation to managing chronic pain, something I am incredibly grateful for. This isn’t the reason I have been gone, but it is something I have been wanting to write about my experience with for a long time. Though it was written months ago, when I came back to read it yesterday, I discovered that it applies even more now.

Here is the link to the post I am so excited for the opportunity to have written:

JESSI CHVAL ON DISTRACTION THERAPY AND CHRONIC PAIN

Published on November 24, 2015

Blog Editor: Rebecca Fortelka

In the guest post, I make sure to include steps I have taken to prevent losing my creative force. There is a portion dealing with guilt that was especially appropriate for me to remind myself of this week. I also describe my top ten distractions and some of the ways I have modified those activities so that they are still possible to enjoy, maybe not every day, but regularly. I am seeing first hand that with practice, pacing, and modifications to favorite activities, you can still lead a fulfilling, richly creative life in the face of chronic pain or illness (or both).

One activity swap I have done is due to not having the energy or physical stamina to paint any more, at least for now. I was devastated at first. Losing painting hurt so much and left such a void, and my grief over not being physically capable of painting seems to come in waves. Knowing how far away from myself I feel when I can’t garden, paint, or cook, three of my more physical hobbies that used to dominate my free time, I took the opportunity to rekindle an old hobby; beadworking and jewelry making! I am loving every second of it, even with the arthritis in my hands, this is something I can do in bed or sitting up.

The reason I have been gone for so long is that I opened an Etsy shop to sell my jewelry and artwork. The shop is called The Hopeful Spoon, where I design, make, and sell Awareness Jewelry for spoonies, as well as Boho beaded creations for the free-spirited style-hunter. Some select pieces of artwork are slowly being added to the store as well. In one month of being open for business so far, I haven’t done half bad! Currently, I am averaging a sale every other day, which is about a quarter of where I need to be, but definitely gives me hope that I can meet my goal in the not too distant future.

Many people have helped me get started, and if I could continue sitting up today, I would give them each the credit they deserve, but that will have to be my next post!

For my readers, I have special spoonie discount codes, as well as two public coupons that are displayed in my shop announcement. The first code is 10SSPOONIE for 10% off of any price order, and the second is 20SPOONIE for 20% off of $50 or more! Happy holiday shopping, and thank you for checking out my newest artistic endeavors. I am loving having my passion for art back in my daily life. I hope you love the designs I have been working with as much as I love creating them. Here is a peak at just a couple of the goodies up on my new shop, with more being added almost every day:

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Etsy Gallery

 

Glad to be back here again, and I can’t wait to see what new achievements 2016 will bring.

Thank you so much for reading my guest post at AXIS Dance Company, checking out my jewelry shop, or sharing either project. I have had a happy, silly grin on my face for days despite it being a really symptomatic week.

I appreciate all the help I have been so fortunate to receive from my spoonie friends, because it is your help that my relatively good first month of business is built on.

Don’t forget the coupon codes if you head over to my shop! They do not expire until January 31st.

Hope everyone had a very tranquil Thanksgiving full of all your happiest holiday traditions.

Harms/Benefits of Somatic Symptom Disorder

Wow. Just wow. There are NO benefits!

EDS and Chronic Pain News & Info

Diagnostic Ethics: Harms/Benefits- Somatic Symptom Disorder | Psychology Today

“…a staggering forty-five percent of autoimmune disease patients report having been denied medical care because doctors mistakenly diagnosed their symptoms as somatoform.

While the title of this piece implies there are both harms and benefits, I have not been able to find any benefits of this new DSM V diagnosis.  Many health professionals are already warning about the harm it will cause – especially to people with devastating physical symptoms of an as-yet-undiagnosed illness.

There are five possible explanations whenever someone presents to a doctor with physical symptoms that have not yet been diagnosed:

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Staying Present During A Flare Up

It’s a major challenge to remain present despite the feelings of despair about all my worsening symptoms and lack of options that I am staring down. At the same time I’m always trying to figure out more and more about living inside my energy envelope and enduring the chronic pain, the lack of predictability, the severity and suddenness that my symptoms frequently come on.
Fortunately, a louder part of me than the despair knows that it’s important to grow and learn from this never-ending flareup, otherwise I am just surviving hour to hour, living in fear, and that isn’t enough for me. I’m greedy.
I want to get to a better place so I can really live again, within my limitations. So I can make my mark, however that is possible. It has to be possible. Everything is so hard now, but I know who I am, and I know who my friends are. I’m stronger than ever in some ways, and I am learning to forgive myself for the weaker parts.
Even when all I can do is breathe, it helps to remember that just being alive is amazing and improbable. I am so grateful for days when I am capable of seeing past the storms overhead. It’s okay that I can’t do that every day, because I’m doing my best.
from Instagram: http://ift.tt/1ENzmMI

Ehlers-Danlos Syndrome Medical Emergency Information Cards

Handy to print out or save to phone in case you end up in the hospital: edsemergencycard

This card is to go with my post on How to Use the ER in Case of Chronic Pain Emergency, which has gotten over 50k views in just under a year! I never thought anything I wrote would be shared to facebook 10k times, or viewed 50k, or shared all over Pinterest, or anything remotely close to that, honestly, especially in my first year of blogging. I’m so thrilled and so thankful for the opportunity to share what I have researched and witnessed firsthand about living with chronic illness, chronic pain, disability, and mental health challenges.

I will be hunting down more relevant alert cards and posting as I find and edit them. Please feel free to leave suggestions in the comments below, and I will do those first!

#ehlersdanlossyndrome #emergency #alertcard #justincase #infographic #chronicillness #chronicpain #EDSawareness #EDS #hypermobility #dislocation #subluxation #JHS #hointhypermobility #hypermobility #severepain #EDSalertcard

from Instagram: http://ift.tt/1cOstTW

Not Pretending

I hesitate to admit this, but it’s important. Before i got sick I was already pretending to be normal, pretending to be happy and productive and on some sort of trajectory, but I was just as lost as I am now. I have been dealing with severe anxiety disorders my entire life, ADHD, obsessive behaviors too numerous to list, occasional bouts of treatment resistant depression, insomnia, self-injury, severely restricted eating or binge eating depending on the year, as well as growing up with chronic pain to a much lesser degree than now in the form of frequent dislocations/subluxations, migraines, and dizziness/nausea, all of which went untreated for a long time, or treated but not correctly.

Now that I have a series of chronic illnesses/conditions, my mental health is under the microscope constantly. It has been enlightening but also terrifying. Not being able to hide my mental health or my physical health anymore is the part I’m still trying to accept. I’m used to being miserable to a degree and pushing through, always pushing through, and to have my body take that ability away from me has caused some serious grieving.

The thing I was most commended for other than my test scores was my ability to pretend like I wasn’t hurting while I was, both physically and mentally. All of the bits and pieces that make me my own person are also things that drew negative attention when I was younger, and I have trouble getting over that still.

My response to the negative attention, eventually, was to reinvent myself to be as normal as possible, as plain as possible, to not stand out too much, and to deny my artsy, nerdy, angsty side the freedom it wanted. Now I’m left with artsy, nerdy, angsty as things I need to learn to be proud of and to embrace again. I want to, I really do.

can you remember who you were before the world told you who you should be?

Those parts of me which long for the freedom to reinvent myself into the person I really am are winning. My hair is teal, my clothes are whatever the hell I feel like, I have been writing more honestly and openly, and I have picked up a paintbrush again.

So the path is there, I know what I need to do, but I’m scared to be myself again. For so long I’ve been this average-intelligence, straight, workaholic, brown-haired, plain-clothed girl who kept the ugliness and the oddness to herself, absolutely devoid of the desire to write the darkness inside of me or to paint it, only allowing thoughts out through a careful filter, and calling that happiness. It wasn’t. Neither was it sadness, exactly. I was just going in the wrong direction.

The reality is that my careful filter is broken now and only works in fits and starts… I can’t be anyone other than the person I have always been underneath the normal life I was trying to build around me like armor. I still love the interests I have cultivated while lost and wandering through life; I still love to garden, bake, and make my own home and beauty products. I absolutely still love my boyfriend, as well as this house and our cat. This is simply my soul wanting me to unleash it in any way possible in my new life, with my new limitations. I need to find a purpose, yes, but I also need to find myself again, be kind to myself instead of denying myself the freedom to be weird and potentially wonderful. So much anxiety must be tied up in the act of pretending not to be excited about the things that truly make me happy.

I don’t fully know what my happiness will look like now, but it will look different than the one I pretended was right for me.

To be honest, I’m relieved.

There are parts of me that are stronger than ever, and then obviously there are parts of me that are so weak that they have stolen life and time from me. But I am a survivor. This is me surviving. It might not be pretty, the struggle can get ugly and mean in an instant, but I have always survived, and I will continue to do my best. That will have to be enough.

I’m not any less okay than I was yesterday or the day before, I am simply not willing to pretend to be better or different than I feel. Some days I am still a suicidal teenager and some days I am a sage adult, and many days I bounce back and forth between the two. However, both are okay, both are me, and I am always going to be a survivor, even when I have no idea what else I am.

The term survivor implies that someone came through or currently resides in hell, however, and that is the part that people seem to forget. The struggle is what breaks you, but it is also what rebuilds you. We cannot be the same after we travel through nightmares turned reality.

Not the same, but certainly still me.

I am just too exhausted to draw a silver lining on my clouds today. Today it’s okay to acknowledge the storm overhead. To be soaked in it and shivering and afraid of the power behind it, but to remember that the sun also exists, just beyond those clouds.

More Exhausted Than Ever

Right now, I will do something very small and have to sit down immediately after or during a slightly more rigorous task, and it’s not the pain that’s knocking me down so hard, although there is a lot of that, I’m just pretty damn exhausted. Like, my bones are way too tired to walk to the mailbox or make it down the stairs to the garden, but I’m still able to fight through and manage those things sometimes. It’s very confusing. Overall though, the fatigue has ramped up to a point where I’m scared a little.

This is not meant to be a bid for sympathy or anything, I just have to have a place to put all this down and get it out of me. My body won’t allow me to do much of anything else and even writing has me fading in and out of consciousness because it leaves me so fatigued. To be completely honest, I’ve been feeling a lot worse lately. I pushed myself trying to create a small business that was never going to happen, and in many other areas of my life, and none of my accomplishments have added up to anything lately, not even one completely clean room. I have learned a lot and there were tiny moments of excitement and victory, but that isn’t anything I can put on my resume, really.

It’s depressing to feel like your health is going in the opposite direction that you’re aiming for. A lot of us are familiar with that feeling though, unfortunately. It’s just another part of chronic illness unless you can find a treatment that works. For a while things will hold steady symptom wise, and then a cluster of new ones will pop up one after another, which is what has been happening recently. Not every single new symptom stays around long-term, some of them will just last the length of this particular flare up, and some of them will attach themselves to my illness and they will be added on top of my daily already unmanageable pain, fatigue, and bodily systems that are completely out of whack. But these new symptoms will not be so courteous as to show up clearly on a test. Just abnormalities here and there, nothing to make an easy diagnosis off of. It makes my head spin trying to get a clear grasp on even the list of weird things that have happened with my body, and a lot of it isn’t stuff I feel comfortable sharing.

This flare up has brought with it a bout of sleep paralysis episodes, limb tremors and increasing muscle weakness, much worse than usual chest pain, rib dislocations, absolutely unpredictable new headaches and some severe migraines that actually got the better of me and landed me lying down until they subsided, hip subluxations on both sides, knee instability and weakness, poor typing and speech, including mixing up words, writing something completely different from what I was intending or thinking I was writing, forgetting phrases and words, increased inability to finish a sentence because I can’t remember why I started it, using big words but forgetting all the small ones, dizziness, trigeminal neuralgia attacks that feel like being struck with lightning over and over again in the same spots on my face, occipital neuralgia that is like being chiseled into on the back of my head, or like someone is grinding a screwdriver as hard and slow as possible into my occipital nerve, tmj issues making it a challenge to eat/smile/talk too much, jaw dislocations hundreds of times a day, lack of coordination and hand dexterity as well as random violent spasming when I try too hard to control my muscles for extended tasks like painting and typing, really painful joints all over, fatigue so heavy I feel like my veins are full of lead and my muscles are made of tissue paper and my bones are filled with cement, GI issues which all of a sudden include throwing up just about every other day, and delayed stomach emptying with all the associated nausea and pain and hating food/food hating me, possibly gastroparesis but I’m hoping not, problems associated with migraineurs even when the really severe head pain is not present (olfactory hallucinations, auditory hallucinations, light/sound/smell sensitivity, big blurry spots or color spots in my vision, things that look like shiny, constantly moving sprinkles all over my field of view, thinking things are moving when they aren’t, as well as not being able to track movement very well), falling asleep suddenly after exertion with no warning, feeling like I’m walking on razorblades and broken glass, sudden moodswings mixed with lots of feeling hopeless or just numb and dissociated from my disobedient body, muscle cramping, brainfog that is stronger by far than my Ritalin prescription, not understanding what people are saying unless they repeat themselves a few times, some obsessive behaviors I cannot stop doing and ptsd flashbacks, skin that hurts like thousands and thousands of nettle stings, and just so much more, but it would take so long to list, and this is why seeing a doctor once every 3-6 months is totally and completely unhelpful.

And I’ve been like this for two and a half weeks now, and it keeps dropping new surprises on me so I’ve got no idea when it will let me go…

I lost 15 pounds, and that was startling and positive. Not sure why I was so startled, I think it’s hard for me to notice the healthy changes I make and pat myself on the back unless some kind of tangible progress comes out of it, but lately I actually have noticed myself doing better at picking the salad from the garden over chips or pasta on the side, I’ve been back into yoga in bed, and in my better moments I try to sneak tiny bits of yoga into my day, with my arms close to my body and not pushing my flexibility to it’s max because I’m not in that kind of shape and my body can and will bend too far in every direction if I don’t watch myself in a mirror while I do it.

I’m so exhausted that it makes me laugh that I’m adding yoga back into my days but I can’t shower more than once every five days. Priorities slightly skewed? I don’t know, a shower is one very big expenditure of spoons that you’re committed to once you start, and yoga I can stop any time it hurts me, I can modify it to hurt less or not at all and to be done lying down even, and I dole out spoons one at a time to each little micro-session which is much less punishing on my body than taking a shower. God I miss being able to do that every day. The stupid shit we take for granted when we are healthy, I was so greedy taking two or three a day during sports and summer or just to get warm in the winter, and I never imagined I would ever give up my obsession with being sparkly clean every single day. It hurts to think about stuff like that though, and in general I just try to accept that things are the way they are and not ask “why me?” too much.

Not being able to shower is a big gauge for how much of a toll this has taken on me. The things I would have never given up if I had a choice, the gardening every day and walking for hours, the freedom of driving and earning a paycheck even if I didn’t enjoy the job or the commute sometimes, my clean house, the freedom to work out or go out with friends whenever the mood hit me, frequently visiting vintage shopping and buying fancy coffees just to treat myself, painting whenever I had a creative idea come into my head, preserving and cooking food especially when it came from my garden, baking bread almost every day, fashion, being able to complete deadlines and not be a total flake, being able to plan my next day and stick to it,

I feel bad enough on a daily basis that younger me, who had a damn high pain tolerance, would have been asking to go to a doctor almost every morning. But I don’t go even when it gets to be unbearable, because it’s so discouraging to be told more than once every 3-6 months that there is nothing new to try, nothing else to do that is in my price range, nothing, nothing, nothing, and to be treated like a drug seeker, a whiner, a lazy kid who can’t be bothered to get a job, when I just want to get better. I just want some hope, some kind of a future to plan on and look forward to. I don’t want to have to take these drugs. I don’t want to have to take two sparse and precious oxycodone just to get through taking a shower. This is not something I constructed to get out of working. I miss working. I’m young, my ability to work was my future and now I’m very lost.

I’m reaching for that point towards acceptance of my illnesses and new life where I can start to explore my talents and try to find more solutions, more small improvements, more joy in my life. I feel like it’s both close enough to grab and pull closer and simultaneously so far away that I fear I just can’t get there. I know I can only take it one day at a time and keep looking for the small victories, the shiny bits and the lessons learned no matter how painful, so I can quietly celebrate my life for those wonderful things amidst the chronic fatigue and pain.

Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes | The Pain Relief Foundation

What follows is a truly fascinating look at why so many Ehler-Danlos Syndrome patients (especially Hypermobility Type, also used to be called EDS-III or Type 3), including myself, languish in pain, not taken seriously, waiting for a correct diagnosis. I accurately fit every requirement for EDS and was born with bilateral hip dislocations, a hole in my heart, and Spina Bifida Occulta affecting both my lower spine in a visible dimple and then at the area where the disc C2-3 should be I have instead two fused vertebrae not caused by injury or surgery. Those same physical therapists and radiologists have told me that I have craniocervical instability, but the PT couldn’t do much about it except help me find exercises that were somewhat safe for my neck.

In a slow car accident involving a semi truck with three trailers hitting my car on my way to work, I sustained two fully torn vertebral discs, and at least four other bulging/slipped discs. That much damage from a car accident that didn’t even total my used vehicle? Totally a give-away for Ehler Danlos Syndrome. I know that Spina Bifida is somewhat more common in EDS families, but I don’t know if there has every been an official link acknowledged between the two, although being born C-section with dislocated hips should be a pretty good indication that I had faulty joints. It’s crazy that my doctors continue to ignore my pleas for a solid EDS diagnosis even though I fulfill the Beighton and Brighton scales/scores on every move, and even though as a child I was known in my gym as “rubberband girl”. That was in comparison to all the other ages of girls there too, some of whom competed and did very well, but were never as flexible as me. I injured myself too many times and healed too slowly to keep it up into puberty . Isn’t that almost the same story of every person with EDS who participated in rigorous and physically demanding sports not knowing they had a collagen problem?

Further proof comes from my mom’s knee cartilage disintegrating in one night of dancing, according to her, and never being the same afterwards. Also the way we scar, and the hormonal imbalance most of us have. All the hip problems, bowel problems, arthritis and vascular issues that run in my family? Probably tied in to EDS genes, is my best guess, and those are all definitely areas of the body affected by collagen or lack thereof. All areas of the body are affected by collagen production. The craziest part is that I have instead been called a liar, been misdiagnosed several times and then called a liar again, which I pushed through only to be assigned many of these so called “wastebasket diseases” for which there is no real standard of care that works for all or even most patients. I know, horrible, horrible name, “wastebasket disease” and it sucks to be in that category because many doctors actually treat you like trash. At the best they mean well but have no idea how to help you significantly.

I don’t know why I have been diagnosed with JHS since my birth, back when it was known as Benign Hypermobility Syndrome (benign, my ass), but in texts now JHS and EDS-HT are medically acknowledged to be the same disease with the exact same treatment recommendations except that with the diagnosis of EDS my doctors may understand why tiny doses of opiates have never and will never cut it. I’m so opposed to any kind of surgery until they understand if I require more anesthetic during surgery than a non-EDS patient.

When I was young and injured myself pretty much once a month, doctors would look at my bones on x-ray film and say that they looked like the bones of a much older person but that I should be fine because I have bigger bones and that should help protect me. I’m not fine, doctors! Help!!! Send me a time machine or at least a geneticist who will take me seriously! I have already lost so much mobility and flexibility, and my spine is so harshly curved now in two places that it is starting to be difficult to get dressed, my fingers get stiff and spasm a lot more, as well as dislocate with the slightest of tasks, even typing. It’s not super painful unless they dislocate in a specific way. There are places it’s happened so many times I don’t notice it except when the joints get stuck and won’t move, like my knees for instance!

The studies that have been done recently say that 90% or more of all EDS sufferers have no idea what is wrong with them, or they know but can’t see a geneticist to confirm, due to lack of clear diagnostic criteria and no clearly defined specialists who commonly deal with the genetic condition. Then there is the often prohibitive cost of genetic testing. I can see why so many of us get left to rot. And there are probably a good deal of high functioning EDSers out there who weren’t dancers or gymnasts and who didn’t abuse their bodies as much as I did, and their life will likely be normal enough that if they learn of it, it will be because of having a child who has EDS, more than likely. I want to find out before that!!! That abundance of undiagnosed EDSers living with the disease seems backed up by all the patient populations they examined in the below article. The high occurrence of fibromyalgia alongside EDS-HT (around 50% of the fibro patients had EDS markers, and around half of the studied EDS population were found to have all key fibromyalgia symptoms) makes perfect sense as outlined by the last reblog I did from EDS InfoThat post deals with the fact that Untreated Chronic Pain is a Medical Emergency, where chronic pain states are explained as often arising from untreated acute pain after trauma, which is totally true in my case. I was too young to be in real pain, because that’s a thing, and my car accident wasn’t impressive enough that I merited correct dosage of narcotics, and I was shamed into not asking for them as often as I needed them.

Anyhoo, rant aside, the article is an elegant, and unique, explanation of so much that is difficult about navigating in the world of chronic illnesses and differential diagnoses.

Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes

Introduction

Functional Somatic Syndromes, conditions characterized by functional disability and self reported symptoms rather than clearly demonstrable organic problems, are a common contemporary health issue [1]. Each medical subspecialty seems to have at least one somatic syndrome for patients whose symptoms cannot otherwise be medically explained. These include: irritable bowel syndrome (gastroenterology); fibromyalgia (rheumatology); tension headaches (neurology); and chronic fatigue syndrome (immunology) [2]. In recent years, however, a significant portion of these patients have gone on to receive a diagnoses of a little known connective tissue disorder: Ehlers-Danlos syndrome hypermobility type (EDS-HT), formerly type III [3]. In this literature review, I will discuss the features of EDS-HT, explore EDS-HT as a possible unifying concept for various functional somatic syndromes, illuminate further implications of the described findings, outline a set of diagnostic criteria that should be implemented by healthcare professionals in functional diagnostic medicine, and propose a novel way of thinking about functional somatic syndromes.

Ehlers-Danlos Hypermobility Type (EDS-HT) Overview

 EDS-HT, considered to be one and the same with joint hypermobility syndrome (JHS), is a relatively common, frequently underdiagnosed heritable condition which predisposes those afflicted to chronic, widespread musculoskeletal pain and a wide variety of articular and extra-articular features purportedly linked to constitutionally abnormal collagen. The diagnosis is primarily clinical in essence and is largely based on the Beighton score (a simple system used to quantify joint laxity and hypermobility) and medical history. It is predominantly of autosomal dominant inheritance, though the molecular basis of EDS-HT is still largely unknown except for a minority of patients mutated in TNXB and COL3A1 [4]. Skin biopsies may show alterations in collagen fibril morphology [5]. Early literature fixed the frequency of EDS as a whole to 1 in 5000, with EDS-HT accounting for approximately half of all registered cases. However, due to it’s vast underdiagnosis, a presumed frequency of 0.75-2% has been proposed for EDS-HT [4].

Hypermobility and the Autonomic Nervous System:

The Missing Link for Various Functional Somatic Syndromes

When first described, EDS-HT was considered to be a relatively benign condition, with acute and chronic joint instabilities as it’s unique clinical consequence. Recently, however, accumulated experience on the management of EDS-HT patients elucidated a more complex clinical picture. In particular, subjects with joint hypermobility appear to be more prone to developing a range of functional somatic syndromes [3], including fibromyalgia [6], chronic fatigue syndrome [7], headaches [8], complex regional pain syndrome [10], gastrointestinal functional disorder [11], pelvic organ prolapse [12], and orthostatic intolerance [13].

An underlying dysautonomic process may explain many of the aforementioned functional somatic syndromes seen in EDS-HT individuals, which are present in practically all major body systems. Leading research suggests that the pathogenic relationship between dysautonomia and congenital laxity of the connective tissue is primarily attributable to the pathological deformation of the brainstem and upper spinal cord from occipitoatlantoaxial hypermobility and cranial settling [8]. In other words, craniocervical hypermobility and instability, and the resulting deformative stress of repetitive stretching and ventral brainstem compression, appear to underlie the observed autonomic dysfunction in hypermobile patients [9]. As demonstrated in pathological reports of fatal cases of traumatic brain injury and numerous animal studies, repetitive stretching of nerves can lead to clumping and loss of neurofilaments and microtubules within the axon and promotes neural apoptosis [14][15]. Strain also alters the electrochemistry of the nerve by decreasing the amplitude of action potentials [16] and increasing calcium influx into the cell [17]. When you apply this research to the context of hypermobile individuals, the underlying process of autonomic nervous system dysfunction becomes palpable. Unsurprisingly, the histopathological changes in neural axons that are undergone in these situations would not show up on any routine diagnostic test. In extreme cases, however, cranial settling and a reduction of the clivo-axial angle may be demonstrable on MRIs, but typically only when imaged in the upright position [8]. This would explain why many of these patients’ diagnostic imaging reports state negative results.

In accord with craniocervical hypermobility findings, recent studies have suggested that up to 70% of patients with hypermobility have orthostatic intolerance and other forms of dysautonomia. The orthostatic effect in EDS-HT individuals may also be compounded by abnormal connective tissue in the vasculature, which results in an increase in blood vessel distensibility in response to the augmented hydrostatic pressure that occurs during orthostatic stress. This leads to exaggerated blood pooling in the lower extremities with a resultant tachycardia [18]. While these findings were predictable, a reversed frequency study, wherein hypermobility was measured in patients diagnosed with Postural Orthostatic Tachycardia Syndrome, a prevalent form of dysautonomia in young people, found that an extraordinary 53% of participants met the diagnostic criteria for EDS-HT [19]. Furthermore, when hypermobility was measured in individuals diagnosed with Chronic Fatigue Syndrome, a condition with a longstanding, established association with orthostatic intolerance [20], researchers found that 25% of Chronic Fatigue syndrome sufferers had generalized hypermobility [21]. This phenomena, though, is likely of multifactorial consequence, as dysautonomia, chronic pain, and sleep apnea secondary to ventral brainstem compression can result in poor sleep architecture and chronic fatigue [22][23][24].

Ehlers-Danlos Syndrome Hypermobility Type as a Systemic Condition

 The autonomic nervous system problems associated with hypermobility, alike various functional somatic disorders, are present in practically all major body systems. In the realm of gastroenterology, for instance, dysautonomia in the form of vagus nerve damage (which may result from craniocervical instability) can result in delayed gastric emptying [25] and affect bowel contractibility, causing nausea and the so called “irritable bowl syndrome” [26]. Moreover, the underlying collagen abnormality of EDS-HT itself is systemic. Insufficient collagen may reduce sphincter tone and increase distensibility of the gut wall (which is likely to influence the function of surrounding cellular mechano-receptors), resulting in decreased gastrointestinal motility, gastroesophageal reflux (GERD) and/or irritable bowel syndrome (IBS). In fact, over 50% of EDS-HT individuals have GERD and/or IBS [4][27]. When hypermobility was tested in patients diagnosed with functional gastrointestinal disorders (which include IBS, functional dyspepsia, and functional constipation), an astonishing 49% were found to have joint hypermobility and many of those patients went on to receive an official diagnosis of EDS-HT [10].

When it comes to neurological manifestations, headaches are among the most common complaint in the EDS-HT population [4]. As a consequence of occipitoatlantoaxial hypermobility, drooping of the cerebellar tonsils and obstruction of the cerebrospinal flow at the craniocervical junction can result in intracranial pressure [8][28]. In addition, rapid fluctuations in blood pressure and inadequate cerebral perfusion on upright posture caused by dysautonomia may lead to migraines [29][30]. People with lax joints are also predisposed to cervicogenic, tension, and new daily persistent headaches arising from musculoskeletal dysfunction in the temporal mandibular joints and the upper three cervical segments of the spine [4][31].

As a consequence of ligamentous laxity, rheumatological complications among the EDS-HT population are commonplace. Chronic pain in patients with joint hypermobility stems from a predisposition to injury from daily minor trauma to the joints and ligaments [32]. Unstable joints may also lead to frequent dislocations, subluxations, sprains, and stretch injury to the nerves traversing hypermobile joints, further increasing the risk of developing chronic pain states such as arthralgia, repetitive strain injuries, and complex regional pain syndrome [4][9][33]. There is also a high incidence of muscular pain attributable to myofacial spasms. Tender points consistent with fibromyalgia are often palpable, especially in the paravertebral musculature [34]. In frequency studies, the prevalence of fibromyalgia in EDS-HT participants was established to be 30% [35] and the prevalence of EDS-HT among fibromyalgia subjects was found to be 27.3% [6]. One theory for the origin of pain in fibromyalgia ascribes it to excessive muscle stress, which may increase the excitability of nociceptive ends of the muscle [36][37]. Joint instability in hyperlax individuals may result in sustained muscle stress (an overcompensation mechanism for loose and injured joints) and over stimulation of nociceptive nerve endings (which are poorly supported by defective collagen fibrils) [38]. An alternative, although equivocal, theory has suggested that biomechanical disturbances in the cervical spine may play a role in the pathogenesis of fibromyalgia. In a controlled study of 161 cases of traumatic injury to the cervical spine (primarily “whiplash”), fibromyalgia was diagnosed in 21.6% of those with neck injury verses 1.7% control subjects with lower extremity fractures [39], bringing us back to the notion that craniocervical instability, and the subsequent neurological damage, may be the underlying process in the development of functional somatic syndromes.

Further Implications of Discussed Findings in the Diagnosis and Management of Functional Somatic Syndromes

 These observations suggest that a careful examination for hypermobility and connective tissue abnormalities should be an integral part of functional diagnostic medicine. Pathological deformation of the brainstem and stretch injury to neural axons due to an underlying congenital ligamentous laxity, as discussed here in the case of EDS-HT, or acquired ligamentous instability, such as whiplash, may indeed be the missing link in the pathogenesis of various functional somatic syndromes.

In a literature review of functional somatic syndromes, Wessely and colleges concluded, “a substantial overlap exists between the individual syndromes and that the similarities between them outweigh the differences” and “patients with one syndrome frequently meet diagnostic criteria for another” [40]. For this subset of patients, generalized joint hypermobility may represent the common milieu for functional somatic syndromes with ubiquitous manifestations. The predispositions EDS-HT imposes would further explain why many of these patients are affected profoundly by emotional arousal (as it’s mediated by the autonomic nervous system) and muscle tension, and why patients with different syndromes share non-symptom characteristics such as sex (as joint laxity is more pronounced in females) and develops at a relatively young age (as EDS-HT is heritable, and hence, lifelong) [4][41].

Accordingly, articular hypermobility can be assessed by using the 9-point Beighton score, which assigns one point for each side of the body on which the patient can (1) passively dorsiflex the 5th finger >90 degrees with the forearm flat on the table, (2) passively appose the thumb to the flexor aspect of the forearm, (3) hyperextend the elbow beyond 10 degrees, and (4) hyperextend the knee beyond 10 degrees and one point for forward flexion of the trunk with the legs straight so that the palms rest flat on the floor. If a patient receives a Beighton score of 4 or more, a referral to a geneticist or rheumatologist for further evaluation is recommended [42]. If cranial settling and a reduction in the clivo-axial angle is suspected, and upright MRI may additionally aid in diagnosis [8].

With this hitherto unobserved connection comes a new line of treatment for a subdivision of patients with functional somatic disorders. Physical therapy, in the form of exercises that strengthen joint-supporting muscles, and bracing may provide joint stability and help minimize articular injury [4]. Elimination of brainstem deformation by straightening and stabilizing the craniocervical junction (via fusion surgery) may also improve pain, neural functioning, and quality of life [8].

Conclusion: A Paradigm Shift in the Etiology of Functional Somatic Syndromes

Disorders that lack “objective markers” are usually considered to be functional, not “organic.” This implies to some that the symptoms in functional somatic syndromes are physiological manifestations of psychosocial factors, a view that enforces an insular attitude to the etiology of disease rather than an interactive holistic approach. Consequently, when investigative results are negative, management is commonly limited to reassurance about the (apparent) absence of disease and occasionally psychiatric therapy. These treatments, however, are unpopular with patients, have low coherence rates, and seldom provide long-term therapeutic relief [41][43].

An alternative explanation is that the organic abnormalities are undetectable through cursory diagnostic testing as the underlying mechanism may be histopathological in origin, or, as seen in the case of upright MRIs on EDS-HT patients, the body may not be in the problematic position when testing takes place. The overly common cognitive error overshadowing high-tech medicine –that emotional issues are the underpinnings of illnesses lacking objectivity– must be overcome. While it is sufficient to say that, like virtually all known illnesses, psychosocial factors do play some role in functional somatic syndromes [1], an over emphasis on medically unexplained symptoms as being psychological bases causal reasoning on a negative. An absence of evidence does not denote an absence of organic disease –it simply means that the conditions that were tested for are not present in the individual and there is an infinite realm of alternative possibilities, such as EDS-HT.

Functional somatic disorders can only be successfully managed in the healthcare setting once a comprehensive understanding of their nature and treatment is acquired. The recognition of Ehlers-Danlos Syndrome Hypermobility type, and other disorders involving ligamentous laxity, as a possible physiological mechanism underlying various medically unexplained symptoms will help bridge the gap in physicians’ minds between described physical complaints and apparent negative test results in a subset of patients. Henceforth, in the wake of this disclosed correlation, further investigation into the role hypermobility and connective tissue abnormalities play in the etiology of these conditions, alongside a redefinition and modification of the diagnostic criteria of functional somatic syndromes, is essential to study of medically unexplained phenomena.

via Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes | The Pain Relief Foundation.

You Don’t Always Have to Feel Grateful That it Isn’t Worse

So, I’m going to just say that things have been pretty bad for me right now. I have so damn many health care, financial, and emotional needs that are not being met, and after three and a half years of waiting my turn, I need something better than this, I need more, I need to live and have hope and at least try to get treatment for some of these problems. But just because I need something doesn’t mean it is possible. Money is an asshole that way. All ways, really.

I am still grieving the loss of a dear friend, and I talk to her at night when it’s quiet like this, and I think she hears me, but I don’t even know how to put into words how much it hurts to obliviously type her name on facebook like I’m going to see her there posting updates, and then to realize that no one gets to hear her sunny voice again. Who knows why it takes so long for the shock to wear off and the sadness that won’t lift to settle in. It’s like my bones are crying now, and I feel her absence physically.

All these things coupled with isolation and excessive pain levels with secondary depression, plus a nasty chest cold have made me a slightly more bitter girl, and I apologize for that, but then again, I kind of don’t want to apologize. Though it’s embarrassing to go off on an angry rant and publish it and re-read it the next day and not recognize who wrote the words, I did write it, and I did mean every word when I was writing and that tells me that someone else out there can maybe feel less alone if I continue to allow myself to occasionally write the lows, the times I don’t cope well, that my chronic illness brings.

The reason I’m suffering this week is simple. I went out, I lived a life for a week with two social calls an hour away from my house, and the consequence for my actions are a dire flare up and infections, even though I practiced preemptive rest, stayed hydrated, slept beforehand and loaded up on vitamins. That’s what the fuss is about, for any non-spoonies reading this. That’s why I’m “obsessed” with my illness and I never seem to win. You can do everything right and chronic illness is still a merciless, evil, cold hearted f*ck who will laugh at your plans, your support network, your therapy progress, your talents, and even your basic needs, and which will deny you access to them all from time to time.

I’m not trying to paint a grim picture, or a “poor me” kind of portrait, I’m trying to say that all spoonies, no matter how small you may see your contributions to be, all spoonies are important. You are important and you matter.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          atleastitisntworse

I guess I’m leaning towards the idea that if I don’t censor myself, I will probably help more people feel accepted and welcomed into the chronic illness community. We don’t have to have rainbows shooting out of our asses all the time to be valued and welcome members of the online spoonie community. I like encouraging people with stories about good days and things I am thankful for, and I won’t give that up, but I also don’t want to be missing a whole group of spoonies who feel pretty worthless and unaccepted by the rest of the chronic world.

Everyone needs a place to belong, even the undiagnosed, the doesn’t-quite-fit-the-diagnosis patients who are still in limbo, they need our support more than anyone. That is a stage in my journey where I was bitter every single day for at least a year.

So I’m going to perhaps post more vehement pieces than usual and not hold myself back. I will stop telling myself I can’t write on my worst days unless I have a good attitude while I do it,because that’s not therapeutic for me, for one thing. I do factor in here too, somewhere, I think.

The reality of being ill is that you will have some good days, some of us get more or less of those depending on our situation, some of us don’t have good days physically, but almost all spoonies eventually get to the point where you can have a series of bad days that you can handle emotionally, and those bad days will make you proud of yourself later on without too much soul searching involved. You endured and even conquered your illness for a while. You got through it without snapping and that’s to be commended. But it’s not to be expected from you. Positivity during hardship is not the only “right way” to cope. Because look what happens next; you overdo it or the weather changes or you cough funny, you have a medication reaction, or you develop a new symptom or allergy and things get complicated.

“Didn’t I just get through another hard week like this?” you think to yourself. It drags on, but you get through it, kind of numb and just making it day by day. And then not-so-wonderfully, another health setback; you have to take care of someone else who is ill, you get asked to another social function you can’t get out of, you have to attend three doctor’s appointments in one week, or whatever else it is, but it adds onto the pile you had not quite dug your way out of from last week yet. But you get through that week, and the next one too, though on the bad days you’re just counting the hours, you can’t even take it day by day things get so overwhelming. Months go by like this, a cycle of debilitation and not-quite-recovery only to be met with more medical problems, more stress, more debt, more isolation and eventually the bitterness that you thought maybe you had “gotten past” can sneak back up on you.

I’m not saying you are required by spoonie law or something ridiculous to feel all of these things in these specific ways for these reasons. I’m just setting the stage for those who are being hard on themselves for not coping as well as they’d like, and for people who may not understand what suffering from an invisible illness can be like when you aren’t improving.

No matter how you cope, or how well you “keep calm and carry on”, you still deserve to be commended. You’ve gone through a lot, and you should feel safe and understood when you are being honest about your pain. Honesty is not negativity.

Wishing everyone extra spoons, low pain days, and super soft fuzzy blankets that don’t hurt you while you’re sleeping. ❤

I Am Not Your Inspiration: The Problem With Inspiration Porn

Disability doesn’t make you exceptional, but questioning what you think you know about it does.” – Stella Young

The danger of being viewed through the lense of the “inspiring cripple” archetype is that it was created by ableists as a tool used to invalidate those who are struggling. It means that people expect things from you that you weren’t even capable of before disability, muchless after. It’s such an unhealthy way of approaching people who are ill, as if we are not trying hard enough unless we can plaster a fake smile on our face and say we’re doing well, when actually we are struggling in ways that only a small percentage of the population can understand. The notion of the inspiring cripple does not leave room for the uncensored reality of the chronic illness spectrum.

If you are able-bodied and do not experience mental illness, I am not your inspiration. If something I say or write is helpful to another spoonie, then that is why I am here and it makes me happy to be helpful whenever possible, but I don’t want ableist individuals thinking that my refusal to cry in a corner every day makes me somehow better at being sick than someone who can’t stop sobbing and wishing for death. I am not any better.

I am not “trying harder” than anyone else and I will not be used to shame someone who feels like they can’t handle their condition. I still feel like I can’t handle being chronically ill on a regular basis.

I am not your feel-good story. I am a deeply flawed human being with constant, unrelenting chronic pain and many other debilitating conditions and symptoms, too. My choices are give up and die, or keep trying to find a reason to wake up and to put food in my mouth once a day. Sometimes that is a genuine struggle. Sometimes I do not get out of bed, and I do not put food in my body, and that does not make me pathetic or weak, it makes me sick. I have good days and bad days and I have given myself permission to have both.

I am so very tired of inspiration porn, aimed at the general public and unapologetically using those who are physically disabled, suffer chronic pain, or live with mental illness and/or neurodivergence. Inspiration porn wants you to say “well, it could be worse, I could be that poor person in a wheelchair or that teenager with a cane, therefore I’m not allowed to feel shitty, ever.”

Bull. Shit.

I am happy to answer any and all genuine questions about my life, my coping strategy, my illnesses, or anything else that someone is interested in, provided that the person asking is not just going to use my answers against me later. I am not interested in answering questions that are actually just thinly-veiled judgemental commentary on how I deal with my pain and other symptoms. I wish that my abled friends could just acknowledge that my reality is not something you can comprehend if you don’t live every second of every day in pain, knowing that the pain is life-long or progressive.

If you are not sick in a long-term sense, please try to understand why you cannot compare my life-altering, completely debilitating daily pain to the last time you had the flu, or the time you broke your arm, or even the car accident you were in, unless one of those things resulted in a long-term illness, disability, or chronic pain disorder. Flus, broken bones, and car accidents may be unpleasant, but after some healing your life resumed as planned, so you have no idea what it is like to live in my body, the body that has caused me to slowly, against my will, forget all my dreams and plans for the future. Please realize that every pain is experienced differently and is unique to each individual who is suffering. Comparison of one disabled person to another person, disabled or not, is never okay. We are not brave for the things healthy people think we are brave for. We are not brave for simply existing, we are not brave for going about our day as normally as we possibly can. Attitude does not differentiate a “good” cripple from a “bad” cripple. Inspiration porn is pure victim blaming, and society has unfortunately picked up this nasty habit.

Ableist propaganda would have us think that if we are not using our illness to transform ourselves into an inspiration, we are just wasting space and burdening those around us. Do not buy into that trash! I am sorry for each and every person who has ever felt like their pain or illness is the punchline to an ableist joke. Those of us who are ill are allowed to make jokes, we are allowed to seek out the humor in our situation, and it is despicable that people would use that coping mechanism against us. Yes, I use sarcasm to cope. Yes, I use humor to cope. No, that does not mean I’m cured or experiencing less pain or “getting better at dealing with it” as so many have said to me. It means that if I don’t laugh about this, it will crush me.

My medical decisions are not up for discussion unless you are another spoonie, and even then, I retain the freedom to completely ignore any and all medical advice that doesn’t come from my doctors. I even retain the right to ignore medical advice from doctors that does not make sense or goes against my beliefs.

I certainly won’t be basing my medical decisions off of an abled friend’s (ex-friend’s) suggestion because they feel like they have “observed my pain” (read: been annoyed by how much I talk about it) for long enough that they are unreasonably comfortable making sweeping declarations about my use of medication, or with stating that I “pity myself” (read: retreat from overwhelming and triggering situations so I can take care of myself appropriately) sometimes. Fuck yeah, I do pity myself sometimes. I refuse to apologize for that.

The abled seem to possess an unlimited capacity to confuse my online and in-person honesty and unwillingness to sugar-coat reality with what they view as pity-seeking behavior and weakness. Saying I have an incurable illness is not pitying myself, it is the truth. I am allowed to speak the truth, my truth, and I am allowed to remark at the depressing reality of chronic pain. Ableism makes accepting the reality of our illness that much more difficult. If I said I never have moments of self-pity I would be lying, and that helps no one. I have every right to be upset about my conditions and to grieve over the losses in my life as a result. And so do other spoonies at any point in their journey.

It is just grotesque that there are people self-righteously using those of us struggling with mental illness, cancer, or chronic invisible illness (to name a few) as their motivation, or to shame others with similar struggles. I don’t want my accomplishments to ever be used to make someone feel inadequate.

The myths that are perpetuated by inspiration porn make it harder to be honest about what we as spoonies experience, which is why it’s time to start calling ableism out wherever and whenever we see it. Just because one person with MS can work a full time job does not mean that another MS patient is faking their inability to work. It’s such a simple thing, to validate someone, yet we don’t do it enough.

You wouldn’t worry about being polite when calling out racism or homophobia, so why would you worry about offending people when you call out their discriminatory attitudes towards chronic illness, disability, neurodivergence, mental illness, and chronic pain?

Why Untreated Chronic Pain is a Medical Emergency | EDS Info (Ehlers-Danlos Syndrome)

the above image is from Chronic Illness Cat and the below article is taken from EDS Info, a wonderfully informative blog for any chronic pain sufferer, which you should all go check out and bookmark and return to often.

Why Untreated Chronic Pain is a Medical Emergency

Alex DeLuca, M.D., FASAM, MPH;Written testimony submitted to the Senate Subcommittee on Crime and Drugs regarding the “Gen Rx: Abuse of Prescription and OTC Drugs” hearing; 2008–03–08.

UNTREATED CHRONIC PAIN IS ACUTE PAIN

The physiological changes associated with acute pain, and their intimate neurological relationship with brain centers controlling emotion, and the evolutionary purpose of these normal bodily responses, are classically understood as the “Fight or Flight” reaction,

When these adaptive physiologic responses outlive their usefulness the fight or flight response becomes pathological, leading to chronic cardiovascular stress, hyperglycemia which both predisposes to and worsens diabetes, splanchnic vasoconstriction leading to impaired digestive function and potentially to catastrophic consequences such as mesenteric insufficiency. 

Unrelieved pain can be accurately thought of as the “universal complicator” which worsens all co-existing medical or psychiatric problems through the stress mechanisms reviewed above, and by inducing cognitive and behavioral changes in the sufferer that can interfere with obtaining needed medical care

Dr. Daniel Carr, director of the New England Medical Center, put it this way:

Chronic pain is like water damage to a house – if it goes on long enough, the house collapses,” [sighs Dr. Carr] “By the time most patients make their way to a pain clinic, it’s very late. What the majority of doctors see in a chronic-pain patient is an overwhelming, off-putting ruin: a ruined body and a ruined life.”

Dr. Carr is exactly right, and the relentless presence of pain has more than immediate effects. The duration of pain, especially when never interrupted by truly pain-free times, creates a cumulative impact on our lives.

CONSEQUENCES OF UNTREATED AND INADEQUATELY-TREATED PAIN

we must also consider often profound decrements in family and occupational functioning, and iatrogenic morbidity consequent to the very common mis-identification of pain patient as drug seeker.

The overall deleterious effect of chronic pain on an individual’s existence and outlook is so overwhelming that it cannot be overstated. The risk of death by suicide is more than doubled in chronic pain patients, relative to national rates.

What happens to patients denied needed pharmacological pain relief is well documented. For example, morbidity and mortality resulting from the high incidence of moderate to severe postoperative pain continues to be a major problem despite an array of available advanced analgesic technology

Patients who received less than 10 mg of parenteral morphine sulfate equivalents per day were more likely to develop delirium than patients who received more analgesia (RR 5.4, 95% CI 2.4–12.3)… Avoiding opioids or using very low doses of opioids increased the risk of delirium. Cognitively intact patients with undertreated pain were nine times more likely to develop delirium than patients whose pain was adequately treated. Undertreated pain and inadequate analgesia appear to be risk factors for delirium in frail older adults. [7]

PAIN SUFFERERS ARE MEDICALLY DISCRIMINATED AGAINST

Chronic pain patients are routinely treated as a special class of patient, often with severely restricted liberties – prevented from consulting multiple physicians and using multiple pharmacies as they might please, for example, and in many cases have little say in what treatment modalities or which medications will be used. These are basic liberties unquestioned in a free society for every other class of sufferer

chronic pain patients are often seen by medical professionals primarily as prescription or medication problems, rather than as whole individuals who very often present an array of complex comorbid medical, psychological, and social problems

Instead these complex general medical patients are ‘cared for’ as if their primary and only medical problem was taking prescribed analgesic medication.

This attitude explains why most so-called Pain Treatment Centers have reshaped themselves into Addiction Treatment Centers.  Even with a documented cause for pain, the primary goal of these programs, whether stated or not, is to coerce patients to stop taking their pain medications.

This may work for a small number of pain patients who may not really need opioids in the first place, but is a “cruel and unusual” punishment for those of us with serious, documented, pain-causing illnesses.

The published success rate of these programs has nothing to do with pain – it is measured by how many people leave the program taking no pain medication, but there is no data about the aftermath, how many manage to stay off their medication long-term.

their obvious primary medical need is for medical stabilization, not knee-jerk detoxification

CHRONIC PAIN IS A LEGITIMATE MEDICAL DISEASE

Chronic pain is probably the most disabling, and most preventable, sequelae to untreated, and inadequately treated, severe pain.

Following a painful trauma or disease, chronicity of pain may develop in the absence of effective relief. A continuous flow of pain signals into the pain mediating pathways of the dorsal horn of the spinal cord alters those pathways through physiological processes known as central sensitization, and neuroplasticity. The end result is the disease of chronic pain in which a damaged nervous system becomes the pain source generator separated from whatever the initial pain source was.

Aggressive treatment of severe pain, capable of protecting these critical spinal pain tracts, is the standard care recommended in order to achieve satisfactory relief and prevention of intractable chronic pain

Medications represent the mainstay therapeutic approach to patients with acute or chronic pain syndromes… aimed at controlling the mechanisms of nociception, [the] complex biochemical activity [occurring] along and within the pain pathways of the peripheral and central nervous system (CNS)… Aggressive treatment of severe pain is recommended in order to achieve satisfactory relief and prevention of intractable chronic pain.

we are seeing ominous scientific evidence in modern imaging studies of a maladaptive and abnormal persistence of brain activity associated with loss of brain mass in the chronic pain population

Atrophy is most advanced in the areas of the brain that process pain and emotions. In a 2006 news article, a researcher into the pathophysiological effects of chronic pain on brain anatomy and cognitive/emotional functioning, explained:

This constant firing of neurons in these regions of the brain could cause permanent damage, Chialvo said. “We know when neurons fire too much they may change their connections with other neurons or even die because they can’t sustain high activity for so long,” he explained

It is well known that chronic pain can result in anxiety, depression and reduced quality of life

Recent evidence indicates that chronic pain is associated with a specific cognitive deficit,which may impact everyday behavior especially in risky, emotionally laden, situations.

The areas involved include the prefrontal cortex and the thalamus, the part of the brain especially involved with cognition and emotions

The magnitude of this decrease is equivalent to the gray matter volume lost in 10–20 years of normal aging. The decreased volume was related to pain duration, indicating a 1.3 cm3 loss of gray matter for every year of chronic pain

clinicians have used opioid preparations to good analgesic effect since recorded history.

No newer medications will ever be as thoroughly proven safe as opioids, which have been used and studied for generations.  We know exactly what side effects there are, and they are fewer than most new drugs, with less than a 5% chance of becoming addicted if taken for pain.

In fields of medicine involving controlled substances, especially addiction medicine and pain medicine, the doctor-patient relationship has become grossly distorted.

doctors-in-good-standing who, faced with a patient in pain and therefore at risk of triggering an investigation, modify their treatment in an attempt to avoid regulatory attention

Examples include a blanket refusal to prescribe controlled substances even when clearly indicated, or selecting less effective and more toxic non-controlled medications when a trial of opioid analgesics would be in the best interests of a particular patient. At the very least, some degree of suspicion and mistrust will surely arise in any medical relationship involving controlled substances.

the quality of care most physicians provide is fairly close to the medical standard of care which is what the textbooks say one should do, and which is generally in line with core medical ethical obligations

For example, modern pain management textbooks universally recommend ‘titration to effect’ (simplistically: gradually increasing the opioid dose until the pain is relieved or until untreatable side effects prevent further dosage increase) as the procedure by which one properly treats chronic pain with opioid medications. Yet the overwhelmingly physicians in America do not practice titration to effect, or anything even vaguely resembling it, for fear of becoming ‘high dose prescriber’ targets of federal or state law enforcement.

It is a foundation of medicine back to ancient times that a primary obligation of a physician is to relieve suffering. A physician also has a fiduciary duty to act in the best interests of the individual patient at all times, and that the interests of the patient are to be held above all others, including those of family or the state.[23] These ethical obligations incumbent on all individual physicians extend to state licensing and regulatory boards which are composed of physicians monitoring and regulating themselves. [24]

A number of barriers to effective pain relief have been identified and include:

  1. The failure of clinicians to identify pain relief as a priority in patient care;
  2. Fear of regulatory scrutiny of prescribing practices for opioid analgesics;
  3. The persistence of irrational beliefs and unsubstantiated fears about addiction, tolerance, dependence, and adverse side effects of opioid analgesics.

A rift has developed between the usual custom and practice standard of care (the medical community norm – what most reputable physicians do) and the reasonable physician standard of care (what the textbooks say to do – the medical standard of care), and this raises very serious and difficult dilemma for both individual physicians and medical board

Research into pathophysiology and natural history of chronic pain have dramatically altered our understanding of what chronic pain is, what causes it, and the changes in spinal cord and brain structure and function that mediate the disease process of chronic pain, which is generally progressive and neurodegenerative

This understanding explains many clinical observations in chronic pain patients, such as phantom limb syndrome, that the pain spreads to new areas of the body not involved in the initiating injury, and that it generally worsens if not aggressively treated. The progressive, neurodegenerational nature of chronic pain was recently shown in several imaging studies showing significant losses of neocortical grey matter in the prefrontal lobes and thalamus

Regarding the standard of care for pain management:

1) Delaying aggressive opioid therapy in favor of trying everything else first is not rational based on a modern, scientific understanding of the pathophysiology of chronic pain, and is therefore not the standard of care. Delaying opioid therapy could result in the disease of chronic pain.

2) Opioid titration to analgesic effect represents near ideal treatment for persistent pain, providing both quick relief of acute suffering and possible prevention of neurological damage known to underlie chronic pain.

Pain Relief Network(PRN); 2008–02–28; Revised: 2008–07–08. Typo’s and minor reformatting: 2014-04-14.

via Why Untreated Chronic Pain is a Medical Emergency | EDS Info (Ehlers-Danlos Syndrome).

hard to see a way out

Chronic Lessons: Then and Now

When I first came down with an invisible illness shortly after being in a car struck by a semi-truck, things looked pretty bleak.

My thought process after six months of dealing with the constant doctor visits and physical therapy, with the pain, fatigue, and fevers, was that either me or my illness was gonna go. Both of us were not gonna share this body.

Fix it or kill me. That was my motto. I could not conceive of a world in which I could not work, but in which I still had value. Value despite a dollar amount I was bringing in. No part of me wanted to accept that I would have to learn to live with this, or that my life not only had to be paused, but also that I may never be able to participate in the same ways as before no matter what I tried to cure myself. We hadn’t even started talking about disease processes or autoimmune or anything at all other than injury from the car accident, but I was frustrated that I just kept getting worse the more work I did to heal.

On the days in between flare ups, before I knew what a flare up even was, I insisted to myself that I was cured, and I was horribly let down and unprepared for every single episode or new symptom that manifested.

When people told me it would be easier and better to approach my illness from a place of positivity, I was furious, because they were making the assumption that I wanted to live with pain in every part of my body, and I really did not, at least not at that point. I had just recently been perfectly healthy, my body and brain up to any challenge set in front of me. How could I adjust to being so drastically limited and in so much pain I couldn’t even drive or work a full shift? It truly seemed impossible.

It also felt like when people tried to encourage me to make peace with all the unknowns and all the debilitating symptoms they were implying that mind over matter would cure me, or at least allow me to live a ‘normal’ or fulfilling life. Again, a life without a job and my recently hard-won independence seemed so completely unfulfilling. I went straight into defensive language, outbursts, and isolation at the first suggestion that somehow I was expected to be strong enough to cope with physical weakness, fatigue, pain, sensitivities to sound, light, chemicals, smells, and touch, energy crashes, cognitive dysfunction, lack of ability to work or drive, and the accompanying guilt and grief that go with losing your place in life right after you gain autonomy over it for the first time. I could find so many more reasons to be upset than to be optimistic. It felt like everything I loved had been ripped away, like all my choices had been taken from me. Of course that isn’t true, but for newly diagnosed or undiagnosed pain patients, especially at a young age, it’s entirely common to feel like it is the end of your life and nothing good will ever be possible again unless it comes packaged as a complete and total cure. The temptation is to retreat and hope that you can pick back up again where you left off when you feel better, and that’s acceptable with temporary injuries and illnesses, but with chronic illness there are often no “feel better” days, and there is only so much hiding from life you can do before it becomes apparent that life is going to continue, albeit differently.

I still have moments where I think I can’t handle it, and weeks where everything spins around me and I hope hope hope I will still be okay when it all lands again. I still fear for my future, I fear for my relationships, and feel insecure about my lowered libido, frequent whining, fitness level, and inability to contribute financially. Those things are part of being human though, if I didn’t experience some guilt and upset over them, I wouldn’t be me.

Amazingly, I have learned a lot through illness. I have learned to be patient no matter how uncomfortable or unhappy I am. I have learned to take care of and prioritize myself even when it feels selfish and lazy. I have learned that internalized ableism is what makes me feel that way, and that ableism does not do me any good, especially not when it has become a part of my own thought process. I have learned the importance of asking for help, though I haven’t quite mastered actually asking for it. So much has sunk in; things that I was resistant to when fibromyalgia and chronic fatigue syndrome first reared their heads. I wonder if I am even the same person anymore, but not in a totally negative way.

I have learned above all that there is not as much wrong with me as there is with a society that teaches people to base worth off of income earned, sexual intensity, physical ability, and even intelligence. There is nothing wrong with having an excess of one or even all of those things. But there is nothing inherently better about possessing those things, either. Except that it certainly makes your way in life a lot easier to have money, health, sex appeal, and unlimited brainpower. Maybe that’s what I like more about myself now; it’s not that easy anymore, I can’t just draw on one of those things and call myself a better person for having it. I can’t reassure myself with meaningless attributes, and that is its own kind of blessing. I have to concern myself instead with things like courage, persistence, kindness, and even that elusive thing we call happiness. Amidst all the pain, being ill has given me something wonderful; it has allowed me to seek out those true, meaningful, beautiful traits in others, regardless of what value society has assigned to someone.

I’m actually surprised that the person I was ten years ago has grown up into a person who does not hate herself and who rarely wastes energy on disliking others. It’s a pleasant realization. I really believe I must have hated myself to treat my abled and active body with such disdain, and to have thought I was so boring when my life was always so full of unique friendships and passions, and to have constantly been comparing myself to others and feeling so shortchanged. Not to say I don’t have moments where my body is a source of insecurity, and I certainly get frustrated with the slow, meandering pace that my brain operates at now. Somehow though, over the years, the negativity has become tempered with “but tomorrow I will be grateful for what I do have”.

A lot of my current (relative) level of peace has to do with getting almost all the way off of Lyrica and starting to paint again (more about that soon!). A lot of it has to do with this blog and the wonderful people who have introduced themselves and the strong sense of community that lives here. Also through the groups I have been invited into because of my writing here. A lot has to do with therapy, some of it with self-therapy techniques, and some with the actual, lasting progress I have made along the way. It’s easy to look back at three and a half years of illness and feel overwhelmed with all the life I have not lived in that time. I had planned to have a career and a child by now, and perhaps to have bought my house.

Ten years ago, I would have only seen that big dark cloud of not measuring up materially to the person I had set out to become, and I never would have noticed all the glints of silver lining to be found from where I’m standing in the rain. Three years ago, I feared there was no happiness or peace to be found amongst the terror and the overwhelming nature of being sick in my early twenties. Two years ago, I knew that others lived with diseases and still had fulfilling lives, but the knowledge just made me angry. A year ago, the knowledge that others out there were dealing with similar things and did not want to die every single day started to give me hope, and this blog helped me find those people and learn the self-acceptance that I needed so badly.

Now, I want to start to figure out what I can do to give back, but I have taken a pretty big set back this week by conscious overexertion so I could spend time with my family and my mom while she was visiting Oregon for ten days. During my recovery from this, I will be writing more and pondering what I have to contribute, and where the chronic pain community would be best served by what I do have to offer.

Thank you for reading my blog, thank you for reaching out to me, thank you for being so understanding and gentle, and so patient. I couldn’t have done it without you.

New Site Header

I tried to make a new header and improve my blog’s layout a tiny bit, but I just can’t decide which header image I like the best, out of all the ones I have made. I guess I haven’t knocked my own socks off yet with any of them, so until then this blue beach scene will have to do. Reminds me of the coast in oregon on an especially pretty day, mixed with the hand-painted watercolor cards my grandma used to send on birthdays.

Check it out, tell me what  you think:

findingoutfibrolivewellheader

You can see I did decide to change the wording of my tagline from “survive with chronic pain” to “live well with chronic pain” as I think that’s a better goal for me now, more than a year out from my diagnosis of Fibromyalgia, about a year out from learning that I also had Chronic Fatigue Syndrome, Joint Hypermobility Syndrome, and Spina Bifida Occulta, and about six months into realizing that I haven’t been making as much progress as I would like, because I also need to deal with  several anxiety disorders, including PTSD. It’s been three and a half years since I was in an auto accident that changed my life forever. I no longer am content with “surviving” because it’s not enough, I want to do more than just get through the day. I want to thrive, chronic illness and pain be damned.

Stock-Image-Separator-GraphicsFairy11

Right now I’m really trying to remind myself to just make one or two changes at a time since I have another blog to get off the ground right now and don’t need to be spending so much time over here, but I can’t seem to stay away. At least I’m taking my own advice about making small changes one at a time instead of trying to overhaul the entire theme in one day.

Pain and Opiates: Perceptions vs Reality | EDS Info (Ehlers-Danlos Syndrome)

More reality checks when it comes to chronic pain and opiates, via a super smart fellow blogger! So happy to print this and put it in my medical binder for those idiots who think I should just suffer endlessly, needlessly, and be happy for the privilege.

It’s just so wonderful when people form an opinion based on facts and not histrionics.

Hooray for using our brains!

😀

Pain & Opiates: Perceptions vs Reality

via Pain & Opiates: Perceptions vs Reality | EDS Info (Ehlers-Danlos Syndrome).

1.    false: Opiates take pain away completely.

TRUE:  Opiates do not remove chronic pain, they do not numb pain like Novocain, they merely dull it enough so that it isn’t all-consuming.

2.    false: Pain is the body trying to tell you to stop, so you shouldn’t take opiates to cover up the pain signals.

TRUE:  Normal pain is an alarm to take action, but chronic pain happens when the alarm gets stuck in the “on” position – the switch itself is broken.

3.   false: Opiates make you dull, confused, and non-functional.

TRUE:  When used for pain relief, opiates allow people to be more active and functional, get out of the house and socialize, sometimes even continue working.

4.   false: There are other pain medications that work just as well as opiates.

TRUE:  Opiates are the most (and often the only) effective medications for pain.

5.   false: Opiates have severe and permanently damaging side effects.

TRUE:  Opiates have fewer and lesser side-effects than most of the other medications prescribed for pain.

6.   false: You will get addicted if taking opiates.

TRUE:  People taking opiates for pain are statistically unlikely to become addicted unless they already have addictive tendencies (5% chance).  However, regular use of many medications causes dependence after your body has adjusted to them.

7.   false: If you take opiates for too long, you’ll get hyperalgesia.

TRUE:  Opiate-induced hyperalgesia is extremely rare in humans, and this scare tactic is based on just a handful of very small research studies.

8.   false: If the pain is constant, you’ll get used to it and it won’t hurt as much.

TRUE:  Pain that is allowed to persist uncontrolled leads to changes in the nerves that can eventually become permanent.

9.   false: Opiates work the same way for everyone.

TRUE:  Different people get the same amount of pain relief from widely varying dosages because our bodies are all different in the way we “digest” opiates.

10.   false: It’s better not to take opiates because they damage the nervous system and cause hormonal imbalances.

TRUE:  Persistent pain results in the same kind of damages to the nervous and hormonal systems.

11.   false: You should not take opiates because your pain won’t improve.

TRUE:  Chronic pain can only be treated, not cured.  Opiates are often the best means available to treat the devastating pain symptoms until a cure is found.

12.   false: If you start taking opiates, you’ll just have to take more and more forever.

TRUE:  Most chronic pain patients finds a stable dose of opiates that works for them.  If doses need to be increased, it is usually because the pain condition gets worse over time.

13.   false:  People only want opiates for the high.

TRUE:  When taken as prescribed for chronic pain, opiates do not make you “high”.  The same chemicals that make illegal users “high” go toward dulling the pain instead.

14.   false: It’s better to tough it out.

TRUE:  Denying people pain relief sentences them to a life of unnecessary suffering.

= = = = = = = = = = = =

“The patient uses opioids to relieve pain and maintain a normal relationship with the real world;  the addict takes opioids to escape from reality.” – Ronald Melzack

= = = = = = = = = = = =

Many people disabled by chronic pain are unfairly accused of lying and faking, so here’s some myths from that category too:

1.  false:  People who complain about chronic pain are just trying to get SSDI.

TRUE:  Most people disabled by pain desperately want to work.  Many had to give up high-level, well-paying positions and now live in poverty on SSDI.  There may some fakers, but this is not a reason to deny SSDI for truly disabling pain.

2. misleading: If injured workers are given opiates they are unlikely to return to work (statistically true)

TRUE:  This is probably because their injuries are serious enough to cause chronic pain and require opiates, not because the opiates are keeping them away from work.

= = = = = = = = = = = =

1. Source for addiction statistic:

http://www.nlm.nih.gov/medlineplus/magazine/issues/spring11/articles/spring 11pg9.html

via Pain & Opiates: Perceptions vs Reality | EDS Info (Ehlers-Danlos Syndrome).

An Old Rant and a New Perspective

I found this article which I had written about on Facebook before I had a blog. The first time I read about this girl’s story I felt so alone, so overwhelmed and out of control and consumed by pain that I cried the entire time I was reading it. I didn’t yet realize how many of us were going through the same thing, or how many friends who truly get what chronic pain means that I would meet along the way. I just knew the desperation, anger, and denial that I was piled under. Fortunately, times have changed, or at least my perspective has. I can still really sympathize with this girl, and understand where she is coming from, and I am still incredibly grateful to her for writing her story at a time when I felt hopelessly isolated. This may have been the first time that I realized if more people were less afraid to speak out about chronic pain, we might be treated like human beings, eventually.

 

My Story: Looking for a New Doctor

National Pain Report

May 26th, 2014 by Kitty Taylor

I’ve had chronic pain as far back as I can remember. It got unbearable a few years ago after a serious injury. My body won’t forget the pain and it feels fresh as day one without medication.

I recently moved to Colorado from Nevada after being with the same doctor for many years. Now I’m having a hard time finding a new doctor willing to prescribe the medication I’ve been taking. I’ve found plenty of clinics that say they specialize in pain management, when in reality they are rehab clinics. Their sole purpose is to wean you off narcotics and put you on highly addicting medication, such as Suboxone or methadone. Some clinics are treating pain with Suboxone long term. That was not the intended use.

Then there are pain clinics, usually the spine centers, that only do injections and don’t prescribe drugs. I wish they would distinguish in their business category what they’re really about.

The first clinic I thought would be helpful turned out to be a Suboxone clinic. On my second appointment there they told me outright that I wouldn’t be continuing on the same medication and that I would be going on Suboxone. If I didn’t agree that, I was told they’d cut my doses so low I couldn’t handle it anymore. So I canceled my next appointment with them.

Drugs like methadone and Suboxone (which may or may not help the pain) are just as dangerous and the addictions to them are intense. The withdrawals are unreal. Coming off the medication I’m on now would be painful, but having to come off one of those could cause months, not just days, of withdrawal and pain.

Not only that, but imagine if you couldn’t get your next dose of methadone or Suboxone, you could end up in a coma! Any doctor that says there aren’t side effects and the withdrawals aren’t bad is lying.

It’s been four months since my last appointment with my helpful doctor and I’m still looking for a new one. One clinic I had a referral to, the doctor refused to accept me as a patient. It’s taking so long to find a doctor and I’ve got to find one quick! There are so few listed and so few that prescribe narcotics or are honest about what they practice. If you are rehab clinic you should not be advertising that you manage pain.

I’ve certainly been made to feel like a drug seeker and nothing more since I’ve moved. My last doctor never made me feel that way. He was caring and compassionate from day one. The only complaint I have about the visits there was that the DEA had them scared to prescribe medications that I had been on for a long time. My medicine and schedules were altered based on word from the DEA, not what my doctor felt was right for me and not what was working for me.

My daily function is greatly decreased since my medications were screwed with and it’s getting worse. First they took away Soma and it was painful trying to find another muscle relaxer. Even the one I’m on now sucks, but it’s better than nothing. Some of them I think were causing more muscle spasms and cramps. It was so bad I looked like I was having a seizure.

Then they couldn’t prescribe more than four oxycodone pills a day when I was on six. They couldn’t even prescribe Demerol anymore because the DEA and the county were having so many problems with it. The hospitals stopped keeping it and the pharmacies stopped ordering it because of theft and robberies!

Kitty Taylor

Kitty Taylor

via My Story: Looking for a New Doctor – National Pain Report.

One of the first things to go was how many different narcotics I was prescribed at once. My doctor had me on two long acting (1 pill, 1 patch), two short acting (1 scheduled and 1 breakthrough). So for short acting, I would have 4 Dilaudid a day scheduled and then up to 6 Norco per day as needed.

The Norco was taken away and so was the patch. I was down to oral long acting 4 times a day instead of 2, and 6 short acting a day instead of 4. It worked out about the same, except those extra Norco would be a godsend about now, especially since I’m running out of as needed meds because I’ve been without an appointment for so long.

This shouldn’t be happening. I’m looking for cash only clinics now even though I have insurance because I don’t want my business in all the computers everywhere. I’d also be fine seeing a pill pushing doctor that over prescribes. I’d be able to stock up in case something like this happens again and I trust myself not to increase my medication.

I never take more than I need and I’ve never run out before my next appointment. Because of being hospitalized I’ve been able to stock up on some of my own stash while the hospital administered to me with their own pharmacy.

There’s no point in making myself more tolerant and never getting what I need. That’s why I switch my meds to equivalent doses of different kinds every few months. That way I don’t need to increase. My body becomes tolerant to one and I switch to another until I become tolerant again and I switch back. This regimen worked well for me and my doctor agreed it was better than taking more and more.

I don’t want to be labeled or discriminated against for having invisible disabilities.

I get enough smacks in the face just using my disabled parking privileges!

12_7.jpg“Kitty Taylor” is a pseudonym. The author, who suffers from Ehlers–Danlos Syndrome (EDS), Cushing’s Disease and Post-Traumatic Stress Disorder (PTSD), asked that her real name not be used.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

via My Story: Looking for a New Doctor – National Pain Report.

 

And this was my response, a year ago:

“This is so much like my story. The way she talks about having to deal with “pain clinics” who only push methadone, or who only push Lyrica and Savella, or who only do injections. None of them have the ability to actually treat acute flare ups. I know from personal experience that even when a procedure at a pain clinic goes wrong and they have caused you intense and unrelenting pain, they do not offer any help, just tell you to calm down, because you’re scaring other patients, and “if it’s really that bad” to go to the emergency room. Pain clinics are a gimmick. A glimmer of hope that turns out to be bullshit when you get up close, every time.

I can’t do cortisone injections, I can’t take most antidepressants, nor steroids, nor do I care to, I am taking Lyrica and two different muscle relaxers at the same time for spasms and I also take all the usual Vitamin D, B-12, magnesium, zinc, rosehips, tart cherry extract, etc, that seem to help maybe? Who knows. The only time I have ever gotten any relief from this pain is after six hours waiting in agony at an Emergency Room, watching junkies and fakers get treated with more dignity than you, because you refused the little cup full of oxycodone and valium (I had already taken my personal comfortable limit of oxy while waiting in the ER, and I told them so, and I don’t do well with valium, it causes panic attacks and it’s written so in my charts if they had payed attention). One time I was told rudely to leave the ER, and then billed $600+ for the pleasure of being treated like human garbage by a very bitchy ER doctor after waiting many hours to be seen. Twice I received actual pain relief that lasted maybe five hours and was the only relief from the hell of fibro that I have had in two years. I haven’t been to the ER in over a year, but I think about how the ER is always full of people who feel better than me. The ER is a very, very, VERY last resort at this point, however.

I’m not even functioning anymore, I’ve been in way too much pain for way too long. I’m just trying to get to a place where I have enough moments in a day to take care of myself properly. I’m not even close to that level on my current treatments. Most days I can’t brush my hair or take a shower. Most days I spend two hours doing a task that should take fifteen minutes. Most days I am overwhelmed and unable to advocate for myself.

The point she makes that I think cannot be overstated is that chronic pain patients don’t abuse medications. Then we wouldn’t have them when we need them. The pain is real and we would never want to not have the ability to treat it.

We are just as scared of finally finding the right drug (can it please be a non-opiate, non-psychoactive drug?) that makes the pain bearable only to have it taken away again, as we are terrified of the pain we are in continuing unchecked. And we are scared of addiction, too. And scared for our organs. And scared for the changes in us caused by taking pain medication. We’ve weighed all that. The pain warrants the medication, or we wouldn’t take it.

The pain is already changing us, rewiring our brains, making us shells of the people we were before, and turning our bodies against us. If there were something better, we would certainly take that instead.

I understand her panic and her logic and I really feel for her.”


 

Phew, so that’s me a year ago. I don’t regret writing any of that, because at that time it was all true from where I was standing. It’s important to note that I was extremely depressed, and had been disappointed and disillusioned so many times. I had a primary care doctor who believed I was faking, no way of seeking relief except the ER, and I very much didn’t understand what was happening to me. At the time, open therapy was doing very little for me. I spent more time staring at my psychologist in total confusion than I did processing or talking things through. She would ask me questions like “what kinds of self-care routines are you doing on a regular basis?” and I would look at her like she had grown a second head, and she would push, “you must be able to think of one self-care activity, I don’t care how small it is.” I was still confused. Self-care? As in, my needs had to take precedent over others before I was at the point of throwing massive temper tantrums, crying uncontrollably in public and at work, and having ten panic attacks in one day? How was I supposed to even start? What did it all mean? Was this lady crazy? I was supposed to get better, not spend more time wallowing in “my needs”.

That’s my thinking a year ago. The level of brain fog I was enveloped in at that time is pretty evident, and there isn’t a lot of built in logic to my ranting, but I wasn’t even aware yet that my cognitive abilities had been taking a nosedive over the past two years. I knew I had Fibromyalgia, but I didn’t know much about it or much about what my life would look like in a year. To be honest, when I typed my response to that writer on National Pain Report, I didn’t even know if I’d be here in a year. Two girls with Ehler-Danlos Syndrome responded to my posted response on Facebook; one is a dear friend now but was someone I had just met at the time, and another I was too self-involved to reach out to in return. Currently, I am haunted that I didn’t reach back, more than I am bothered by anything that I did write. Reading through this outpouring of my own overly raw emotions made me wince, but seeing how I ignored another spoonie’s attempt to connect gave me actual regret. Both girls have EDS and encouraged me to push forward to a diagnosis.

I still don’t have the diagnosis, but I am treating my joints with much more care and attention and I am seeking physical strength instead of allowing fear of injury to mandate every activity.  I also do finally understand what self-care is and have a long, long list of ways to recognize and put disordered thinking in perspective, but I am still learning more every single day. I would no longer characterize my life as hellish. Some days are indeed horrible, but I have good days too, and I am more prone to seize them now than a year ago.

I feel gratitude and empowerment when I take care of myself these days, not selfish guilt, but it took reframing my thoughts, repeatedly. Of course I still forget to make myself a top priority sometimes. There are always improvements to be made, but I am confident (another new development) that I will continue to make necessary changes and seek out information that helps me cope. In the mean time I am trying to find joy in small wonders. Any little victory is cause for celebration. Today, I’m happy that I have made progress since my diagnosis. Visible, written down, real progress. All the hard work has been overwhelming at times, it has even felt like I have slid backwards more than I have been able to put one foot in front of the other and keep climbing, but in one short year, the small changes I have made have taken me a long way from not knowing if I wanted to be here in a year, to planning for the next five, ten, twenty years of my life. I am even starting a business with a close friend, something I thought was ripped out of my grasp by illness which has actually become much more possible because of the life adjustments I have made to accommodate the chronic pain that dogs my every move.

It just proves that accepting and processing what illness means for me personally, minus the guilty nagging voice in the back of my head, has made all the difference. I think others around me may be frustrated by how little I can seem to accomplish in a certain amount of time, but I now realize that this isn’t their journey. It’s my journey, at my pace, and that’s healthier than continuing to constantly feel like a failure for struggling to keep up with everyone around me. I don’t have a magic finish line that I can get to and be “recovered”. The best I can do is the best I can do, end of story. I will work with what I’ve been given, and I will be grateful for what I can do on any given day. Sometimes that means just breathing in and out for hours, nothing else, and sometimes it means charging at life like I don’t know what pain and illness even are.

 

In Honor of Rare Disease Day 2015: The Difficult Diagnosis

I would like to take a moment to recognize that February 28th is Rare Disease Day.

The name implies that not that many people are affected, but that’s a totally false assumption. There are way more of us than you would ever guess! Many of these diseases are so rare that physicians do not know how to test for them, would not recognize the symptoms, or take adequate steps to obtain diagnosis. There is only room for a certain amount of information in each person’s head, and I’m not implying doctors aren’t doing their job, just that there are probably many more who live with rare diseases than are currently counted on the tally, which is already estimated at well over 300 million worldwide. I live with rare disease, I know many who do as well, and let me tell you, a rare disease is a special kind of hell burden. Doctors think you’re crazy for even bringing up genetic testing, they think you’re a hypochondriac if you tell them what your symptoms and odd blood tests match from all your painstaking research, which if you have a rare disease, you absolutely have to do, and they scoff at the mention of names they’ve only briefly skimmed in texts and never seen in real life.

WRDD template 9 no photo 2014

My rare diseases are ones that are actually fairly well-known, though doctors usually don’t know much beyond a one sentence summary (if I’m lucky), so finding proper treatment or even a specialist with a depth of knowledge on them is difficult. My path to finding a diagnosis is not over yet, and what I have managed to find out has been like pulling teeth. I know I’m one of the lucky ones just learning as much as I have so far.

When I first gathered the courage and research needed to talk to a doctor about Ehler-Danlos Syndrome, her immediate reaction was to call me fat. Yes, really. She looked at me, puzzled, and said, “Isn’t that a disease for tall and thin people?” and I had to bite my tongue, hard. I also had to accept that she was not going to help me with this. Not now, and not ever. She simply thought I was nuts, even though I match 100% of both diagnostic criteria. It was humiliating, I felt lower than dirt and like maybe she was right, maybe it was all in my head, I was making this up for attention or so I didn’t have to work anymore. She had me so confused at a difficult time in my life when I didn’t realize that pain affects cognitive abilities, and she definitely abused her position of power as a doctor, numerous times. I started to internalize all her comments about my psychiatric health, personality flaws, and physical unattractiveness. I lost trust in myself completely because I thought I was either dying or a liar, and I couldn’t figure out which one.

Unfortunately for my entire story, really, I was in the middle of a lawsuit with a company whose semi-truck hit me, so I didn’t want to switch doctors, even though she was pretty incompetent and wouldn’t sign off on X-Rays for months after my car accident, not to mention that she made me cry and hate myself and panic for days after every appointment. This doctor often repeated with obvious frustration that there weren’t a lot of options, she didn’t know what else to do for me, and that my panic disorder was obviously the root cause of all my problems, not my car accident. Sigh… there’s much more to my dealings with her, I have a long list of quotes that would make you cringe! But telling me it was all in my head was her favorite. She did it in writing, even.

Nevermind that I had actually been diagnosed with two relatively serious spinal injuries once we started taking X-Rays and MRI’s, and they were dire enough to warrant my two neurosurgeons getting excited and thinking they were going to get to cut into me. Both of them were told politely that for me, back surgery is not for curing pain, it needs to be done for a more compelling reason, or in the case where surgery will stop further degeneration. Neither one of those things is true for me, and neither doctor really believed that they could improve my pain in the long run. They both just wanted to “cut and see”. No. I have enough problems without botched spine surgery! In addition to the torn disc in my lumbar and the one in my cervical spine, there are also a set of birth defects including the Spina Bifida, plus 11 Schmorl’s Nodes (central disc tears that protrude into the vertebrae below), nerve root cysts, a random scarred area of my spine about a centimeter across, height loss and disc desiccation, bulging discs, disc degeneration/arthritis, and best of all, completely unexplained extra cerebrospinal fluid trapped in odd places in my spinal column, even two years after the car accident. I was told that none of that stuff was a big deal, but I beg to differ! At 22 I had more problems with my spine that most people in their 70’s or 80’s. That is not “normal”. As far as figuring out what out of all those issues is causing me pain? I don’t think it even matters at this point, studies have failed time and time again to relate MRI changes of the spine to specific problems. We all seem to experience them differently. Supposedly other people whose spines look like mine can actually function as if nothing is going wrong in there. Good for them. I guess I’m just rare on all accounts!

Ehler-Danlos Syndrome, Spina Bifida, Fibromyalgia, CFS/ME and Occipital Neuralgia

I sought out the local teaching hospital in desperation, starting at the pain clinic where I was, somehow unbeknownst to me, diagnosed with fibromyalgia, hyperalgesia, allodynia, and neuropathy. Since no one bothered to mention that I had been diagnosed with those things, I was still frantically looking for answers in a myriad of other directions, while waiting two months for my referral to rheumatology, where I finally figured out what was happening to me, or at least found out that I had been right all along to keep pushing, and to not let any MD stigmatize me into silence.

My primary care at that time still didn’t believe that I was in real pain, even after emailing back and forth with my fibro specialist, and I’m pretty sure she thought fibromyalgia was a fake diagnosis. She told me she was sure I didn’t have it even after two specialists diagnosed me months apart, at the most reputable hospital in the state. “Other people have it so much worse, just get over it” (not necessarily as true as she thought it was… I was just very stubborn about hiding how bad it had gotten because it made me seem even crazier). “You’re a smart girl, I don’t understand why you can’t figure this out” (thanks?). “If you would just eat right, this wouldn’t be such a big issue” (Wanna come over to my house and cook healthy every night and watch me throw it up later because many “healthy” foods hate my body? Didn’t think so… I’m doing my best. Food doesn’t cure chronic illnesses, though it does help). “I can’t do anything for your pain, but you should really start taking longer walks” (this was a favorite of hers… infuriating when you are trying to decide if walking to the toilet is even an option right now). “You won’t get better by taking time off work, you just need to try to get through it.” and best of all: “Oh, is that your sympathy cane?” Phew. Right. Because if you can’t see it, you must make the person feel terrible for having it. I struggled through years of increasingly aggravating (more like tortuous) physical therapy and massage, while my other symptoms began to make themselves known and I pushed them away, in denial.

It was all related to panic attacks, I told myself. Calm the fuck down, Jessi, then it will stop.

Except, it didn’t stop, even on a massive dose of 3mg per day of clonazepam, which works out to about 9mg circulating in your system at any given time, more if you’re a slow metabolizer.

I was stuck with that mean, bitchy primary care doctor, throughout the three years of wasting what little energy and brainpower I had on a lawsuit that failed because I was too exhausted, sick and in severe, never-endingpain to focus on seeing it through.

In the end I went into the office of the attorneys who represented the company that hit me, just me and my boyfriend, and I talked them up a couple thousand from the measly couple thousand they offered. I made the attorney I was arguing with leave the room to talk to his boss at least eight times, and after three years of work and hope and being told my case was worth hundreds of thousands because my life had been utterly destroyed by this accident, I was dropped by my lawyer within a month of my court date and told for the first time that the accident didn’t ‘look big enough’ to have ruined my life, and a jury would think I was malingering. I gave up, something in me snapped after three years of putting so much hope into being fairly compensated for what had happened to me on my way to work and all the torture I had endured since, all the tests and all the ER trips and the days spent in woozy pain land.

We closed the case in the enemy’s plush, modern law practice, at the beautiful inlaid table, in the room with soaring glass walls overlooking a rooftop garden and downtown Portland. When the attorney picked up my signature off the table and began to turn his back and walk away, I felt my soul deflating. I had been keeping strict wraps on my panic attacks for months up until that moment, but my body took over right then. It started as a swelling in my chest and a ripping sensation in my throat, and then a noise that sounded more like a dying animal than an upset human tore it’s way loudly out of my lungs. I am not sure how long I sat there and screamed at the top of my lungs, my boyfriend trying to close the curtains while people came up to the glass room like I was a monkey in a zoo, staring in at the girl freaking out for no apparent reason.

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What my doctors are starting to understand now, years later, is that I was so affected by the car accident because I was a perfect storm of bad genes, PTSD related scars in my spine and on my brain, and birth defects; a ticking time bomb that exploded when I was hit, and set in motion a cascade of chronic illnesses.

Ehler-Danlos Syndrome is congenital, and it often comes along with a host of other rare conditions, such as Chiari Malformation, POTS, OI or other autonomic nervous system failures falling under the category of dysautonomia. Having a tethered spine, cognitive impairments, Occipital Neuralgia/Migraines, Trigeminal Neuralgia, TMJD, Spina Bifida, Chronic Fatigue, and Fibromyalgia are all associated as well, among many other issues. There are two scales to help you figure out at home if you may need to bring Ehler-Danlos up with your own doctor; one is called the Brighton Scale, and one is called the Beighton Score. Either one is accepted as the standard for diagnosing the disorder in the absence of genetic testing, but it’s easy to measure both scores at the same time.

BEIGHTON SCORING SYSTEM for Ehler-Danlos Syndrome:

Beighton Score Chart: Evaluating for Ehler-Danlos Syndrome

It is extremely important to know if you have EDS, especially if female, one of the reasons being it can be an issue with pregnancy. In addition, it affects your connective tissues, which are not just in your joints, they are in your organs and throughout your body as well. It’s also important to know that if you suspect you have it, the treatment is not much different for EDS type III Hypermobility (the most common) as it is for severe Joint Hypermobility Syndrome, so even if you can’t get a formal diagnosis of EDS, insist on them writing the severity of your JHS in your medical charts for a more discerning doctor to pick up on later, hopefully, and then do physical therapy for hypermobility, but carefully and only under the guidance of someone who knows how to improve muscle tone around the joints without stressing them too much or risking them subluxing or slipping out!

There are 6 main subsets of Ehler Danlos, but even more variances than that exist within the condition when you get really technical. Some are much, much worse than what I suspect is going on with me. I have a friend I greatly respect and admire, who actually managed to acquire not one, but two forms of the rare disease in utero.

Here are the various types of Ehler-Danlos Syndrome:

The main six types:
Classic Type I, Classic Type II
Hypermobility Type III
Vascular Type IV
Kyphoscoliotic Type VI
Arthrochalasia Type VII A-B
Dermatosparaxis Type VII C

The actual meanings and specifics of all these diagnoses is variable and too lengthy to go into detail on here, but for more info, feel free to head over to EDNF.org (Ehlers Danlos National Foundation) which has a lot of good info for patients and physicians alike. I am still trying to hunt down a doctor who will agree to genetic testing, but in the meanwhile I am doing my best to learn to avoid subluxated joints and painful dislocations as much as possible.

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“More than 350 million people worldwide suffer from a rare disease. If a disease affects fewer than 200,000 people in the United States, it is considered rare. There are currently about 7,000 rare diseases identified worldwide, and approximately 80 percent are caused by genetic changes. These diseases are often chronic, progressive, complex, life-threatening, and affect the quality of life.”

via Global Genes: Is Genetic Testing My Path to Diagnosis?

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I was born premature. For many reasons that were unavoidable at the time, my mom was on medications that are now considered seriously unsafe to a fetus and one in particular which has been straight-up recalled by the FDA, called Terbutaline, to keep me inside, and to keep her alive while medical emergencies kept cropping up. It was not a fun pregnancy for my mom and it was her first, and I think in the disaster of incompetent doctors I just got lost in the shuffle. I was pronounced a healthy baby with a minor heart murmur and bi-lateral hip dysplasia, and no one even noticed the Spina Bifida and hypoplastic vertebrae. I can’t blame them, when you’re contemplating heart surgery on a preemie infant, I suppose there are enough things to worry about without actively looking for more issues. Now it is tested for regularly, and monitored for in families with a history, though it is not entirely clear if genes, environment, or more likely a combination of the two, are to be blamed for it’s appearance in a fetus. However, we do know that it happens within the first four weeks, and the risks of having a baby with Spina Bifida if you have it yourself are much higher than for someone without it, but are also greatly reduced by taking 4mg of folic acid a day. Doctors vary on how long a woman should be taking the folic acid for optimum results, but all say a very minimum of a month, some say a year, of taking a regular dose of folic acid and other prenatal vitamins before attempting to become pregnant.

My father has Spina Bifida Occulta as well, and the same cracking joints that get stuck, but he is the opposite of flexible. I, however, was a gymnast nicknamed “Rubber Band Girl” by my teammates because I was so damn bendy. My younger brother has Spina Bifida too, and is also still insanely limber and never ‘grew out of it’ like he was told, and has joint pain as well. I was much more active than him as a kid, involved in gymnastics, swimming, ballet, tee-ball/softball and just about anything else I could attempt my hand at.

My pain has skyrocketed uncontrollably throughout young adulthood, especially since my car accident, but before that I had pain that I thought was either normal or “no big deal” (although you could see by my declining test scores throughout middle and high school that it was a big deal) and tried to play it off in a variety of ways. I especially remember that getting picked up as a kid was something I dreaded with the wrong person, because too much digging in my armpits or hips or back was insanely painful. As a child and throughout being a teen, my hip used to pop out while I was lying in bed, and I would be frozen, silently screaming like the wind was completely knocked out of me until I could force it back in. But that was “normal”?

The Spina Bifida pain presented itself mostly as tailbone pain and low back pain throughout my childhood and teenage years. I could do more sit-ups than anyone else in a minute, in my entire grade, boy or girl, but I had to be on the cushiest stack of floor mats or I couldn’t even do one. Laying on a hard surface would make me sweat with pain. Again… why that was normal, I don’t know. Anything that requires lengths of sitting or lying on something hard left me wondering if I was going insane, or if I should tell someone how much it hurt. It took until last year to get a formal diagnosis of Spina Bifida added to my chart, but I am so glad I know now and that I know to seek medical advice before becoming pregnant, if that is an option for me at all in the future.

From my rambling about it, I’m sure you gathered that Spina Bifida is one of these rare diseases as well. It is widely screened for now, thankfully, and there is even a surgery that can be done in utero to close a hole in the spine of the fetus if the problem is very severe. People with Spina Bifida who are looking to conceive can obtain genetic counseling to see what their chances are of birthing a non-affected child.

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I had planned to write more, and maybe I will come back and do some more work on this post soon, as I just learned that this entire coming month is dedicated to raising awareness for rare diseases.

Related Media for Further Research:

http://www.rarediseaseday.org/ – An organization dedicated to bringing to light rare diseases and their causal factors. Networking for patients.

http://globalgenes.org/rarelist/ – A comprehensive list of almost all known rare diseases, with links to organizations where possible. This website also has toolkits for various life situations that face patients and caretakers, as well as packets for starting a fundraiser for rare disease. They have quality images for spreading awareness through social media as well. Most of the ones I used in this post come from their press release packet.

https://www.rareconnect.org/en – Hosted by trusted patient advocates, this is a place where rare disease patients can connect with others globally.

EDNF.org (Ehlers Danlos National Foundation) has a lot of good info, for patients and physicians alike. It also includes a section on how to find a diagnosis, and many of my friends have stated that emailing the organization can help push you through to an interested specialist as quickly as possible.

http://chronicillnessproblems.tumblr.com/EhlersDanlosInfo – An awesome collection of information assembled by a fellow blogger. Incredibly thorough and way more in depth than my little synopsis! She also has a wealth of links and research included, which is nice for those of us who like to learn as much as possible.

http://www.spinabifidaassociation.org/ – For 15 years the Spina Bifida Association has been seeking answers, spreading knowledge, and connecting patients. This website has a great selection of information for patients, practitioners, and caregivers.

Rare Disease affects Millions

Hypermobility = Unstable Joints = Two Black Eyes

Wow, I sure feel like an idiot. Also I’m miserable, so whatever lesson I was supposed to learn, I think I got it now, universe! Seriously, you can stop!

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Until last night around midnight, I had not slept for 68 hours. At all. I don’t usually end up forfeiting more than one night at a time to Chronic Pain, but this time she went ahead and took two full nights from me, and then some. Bitch. Anyway, I was hurting from trying to have one of those as-enthusiastic-as-before-I-got-sick nights of fun with my boyfriend, but ended up accidentally injuring myself absolutely everywhere while we were at it. Waking up a couple hours later on Sunday, I realized there was no way I was going to be able to get out of bed at all unless I got up right then and there, so at 5 am on Sunday, Chronic Pain began her longest winning streak against my sleep since the car accident.

I don’t remember everything from this entire time period, and you can kinda see why in the picture!

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I know I laid down to go to sleep both nights, but that both nights, nothing happened, so rather than stress and get frustrated in bed, I got up and paced around the house, smoked a cigarette, drank a glass of water, wrote in the hard copy journal I sometimes keep, did light stretching, self massage with the DaVinci tool and the back buddy, and ten minutes of breathing. Still awake. Okay. Rinse. Repeat. Rinse. Repeat. Damn it, sun is shining, guess I am up for the day. Same thing the next night, only I was in even more pain and way more loopy, and my limbs were shaking and sore and muscles all over felt torn and limp.

I was wall-walking, which is how I navigate my house when my balance and motor skills start to go, or when my vision is not what it should be. Unfortunately I had just moved a bunch of furniture earlier in the week to create more open space in the living room for my business partner and I to actually get some work done and set up the play pen for her little boy. Instead of guiding myself to the couch with familiar furniture, I ended up with one leg collapsing out from under me just as I took a step, then realized I didn’t have anything to grab onto. So my nose grabbed onto the side of a table or just the floor, I’m not quite sure, and I blacked out for a second (actually have no idea how long I was out…), came to on the hardwood floor in my living room, close to the couch, but not close enough, and realized that my hand which was cradling my throbbing nose was full of hot liquid. Shit. Shitshitshit. “Chris! Hey… honey, can you help me?” I remember calling loud enough to wake him up as I made my way towards the bathroom. The bleeding took kind of a while to stop, and for obvious reasons after knocking myself out like that, I couldn’t go to sleep that night either. Yesterday crawled, I kept nodding off until my cortisol levels caught up with the day again around one or two pm. Coffee couldn’t help me, but I kept trying. I was so excited to sleep last night, finally, that pain be damned, I had already done an hour of relaxation including meditation, visualization, gentle yoga, and working on my breathing, so I was out cold in under 5 minutes after crawling beneath my pile of blankets. I woke up at 5 am to my right leg screaming painfully at me because all the blood had for some reason stopped moving around in it, and it was throbbing and immobile, and hurt like I always forget is even possible, all my toes twisted and curled up in unnatural positions. I had to stretch the toes out by hand after I dragged my dead leg over the side of the bed and mostly succeeded in not screaming when it hit the floor. Excruciating is the only word for trying to get blood pumping in a limb again once it has pooled there. So even last night, though I slept, I was up and down again.

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And that’s what my black eyes and nose looked like when I woke up this morning, so I won’t be leaving the house for a bit unless it’s an emergency. Haha, embarrassing!

If this cycle is going to keep repeating as it has been for the last year or so, I am going to need some kind of pain relief, obviously, to make it possible to sleep during flare ups at the very least, so I can break the cycle. Being able to sleep is the only way to begin to crawl my way out of a severe long-term flare up. Haven’t I shown that I’m willing to try anything and everything, haven’t I given it all a real try? What works best should be available to me, but it is not. This whole demonization of opiates has hurt so many innocent bystanders, and it has hit the chronic pain community so hard that many of my friends who were on pain contracts and have been dropped recently have reverted back to unhealthy coping mechanisms and self-medication. After years of success working with their doctors they are being treated like junkies, and I think being treated like that actually produces more addicts than anything. Anyway, tangent over, back on subject: I usually (since the car accident anyway) cannot sleep at least four nights a month because of pain, and I have accepted and adjusted to that. Unfortunately it’s been more like six or seven nights just in January so far, and that is starting to increase my pain even more. This is one giant vicious cycle that I want out of so badly. I don’t sleep or nap during the day, it’s part of the mystery with my case, and it confuses my doctors a lot, but to me it’s just my personality. I also can’t “catch up” on sleep from one night to the next because sleeping extra hours equals severe pain that I have learned the hard way to avoid by setting an 8 am alarm, just in case I manage to sleep in that late. My schedule is as consistent as my pain allows and I thought I was improving, but this latest increase in pain and accompanying strange ramping up of other symptoms has left me concluding that was just hopeful optimism.

This week in particular the meds that are supposed to make me fall asleep and stay asleep are making me feel wired and wide awake, and the meds that are supposed to help me focus and get through the day are making me want to curl up in a ball somewhere dark and sleep it off. That makes it hard to want to take anything at all, the only thing that keeps me on my regular maintenance doses of everything and keeps me slowly decreasing the Lyrica is knowing how awful the withdrawal effects are on top of an already painful day (previous experiences where I thought I had taken my pills, only to figure out the next day, in extreme pain, that I had actually missed one or two doses, or accidentally falling asleep with nothing on board, or thinking that I was magically cured for a day and not taking my meds. Oh, how I have learned).

Lately my whole-body pain has increased, as have my migraines, and though I have met this change by continuing my small exercise regiment and getting up at the same time, eating healthier and limiting my caffeine and sugar intakes, it has just continued to roar brighter and higher, an ever-increasing, agonizing bonfire blazing across my brain.

I have found that beyond a doubt, not a one of my current meds helps with breakthrough pain or flare ups. and I have to wonder how I am supposed to be increasing my activity levels and taking on more and more responsibilities while I am just getting worse and there is absolutely zero relief from the resulting negative impact on my health. Being in so much pain that I can’t even catch an hour or two of sleep is just unacceptable. I’m not headed for better health by pushing myself like this, I’m headed for new scary/weird symptoms, extra agony, and perhaps even total physical collapse.

I have been saturating myself in a mixture of all of my topical treatments combined into one super-pain-gel, with extra crushed up arnica tablets, drops of essential oils, high CBD/CBG hemp oil, castor oil, and everything under the sun that is considered a pain-killer or anti-inflammatory. I whip this concoction up often when I am in more pain that usual, but this time it is not working as previously, so I called up my compounding pharmacy to find out how much ketamine they can cram into one of these creams for me. Turns out, three times more than is in there right now! I am so relieved, that might actually help me! They also add something called LDNs to topical treatments, and if anyone has any experience with LDN’s either topically or orally, for chronic fatigue or fibro, please, please, PLEASE leave me a comment with your take on it! I am fascinated.

My boyfriend actually found the article about them as relating to fibro pain, so thanks to him at least I have something new to try that doesn’t necessarily have to be ingested (my kidneys need a break!). I am really encouraged that he researched my situation enough to find that potential solution! On the other hand, there is still no verbal reassurance from him, no open communication, no emotional honesty from him, and no two way conversations. Just…. Trying not to be so upset about how I think he feels towards me and focus more on how I feel towards myself. In the end, in order to be in a true relationship I must have the strength within me to keep trying to thrive, all on my own. My strength doesn’t come from him. Even if it would be so nice to have his verbal support, not having it won’t kill me. So progress has been made on my side in the relationship, and some progress and gestures have been made on his part. I have been kind of cool and reserved towards him, and that’s because in between my own bouts of emotional honesty, I have noticed how there is never a reply from him, never any comfort besides physical, and unfortunately I can’t always tolerate back rubs, hugs, and tilting my neck or moving my jaw for kisses. Plus, with all my abandonment issues and PTSD, I have to be careful to disengage from my most co-dependent behaviors, such as changing my emotions to suit his mood. The goal is to do this without hurting his feelings, but it’s rough. It’s hard to explain to him why our relationship is less healthy than is ideal, and it’s hard to keep pushing for what is better for both of us. I got us into this mess by dragging so much baggage, trauma and emotional damage from my childhood unknowingly into our relationship. He did not choose to be in the role that he is in now in our relationship. I just keep talking and hoping some of what I say is making it through and hitting its mark, because I have no way of knowing for sure. Sometimes my own fears cause me to act out, and that seems to be the case here. The reality is that he does many small sweet things, he tries, he wants me to be happier, he wants us to keep working towards a better tomorrow. Even if he doesn’t know how to communicate it at all, and he doesn’t know how to say the words I need to hear from him, he loves me. There is so much room within that love that together I know we can shape our relationship into one that is truly honest, content, respectful and forgiving. We will get there, that goal is a lofty one even for a couple not dealing with Chronic Pain. On this issue, Pain can kiss my ass, that jealous creature is not taking any more people out of my life than she already has.

Right now I am at a cross roads with my life in so many ways. I find out in the next three days, hopefully, if I am qualified to stay on my mother’s health insurance. Super Stress! If not, I lose everything concerned with my health which I have so delicately balanced in my life right now; all my access to medications, doctors that I need to continue seeing, the teaching hospital, my psychiatrist and mental health care in general, and to top it all off, Fibromyalgia is not a covered condition under the state-run health insurance. Great. Fucking great. So there’s the cause of much of my anxiety lately. As usual I procrastinated, and as usual I didn’t have most of the information I needed when it would have been ideal to have it, but unlike usual, I didn’t let my ADHD and brain fog stop me from getting everything in on time, early even, and following up with them. I have sticky notes, alarms on my phone, tasks on ToDoist, etc, anywhere I can slap reminders to stay on top of this stressful issue. The idea of losing access to any quality healthcare is terrifying beyond words, I do not even feel capable of contemplating how that will go if I am denied.

Most days it is a major struggle to get anything done at all, and even though I have only been able to shower once every four or five days, I just keep doing the one or two tasks a day that I am capable of, and that has so far in the last month added up to a rudimentary business plan, a super organized list of links to wholesalers, ingredients, prices, as well as display and packaging ideas, and recipes for many of the products we will be attempting to make. Only the best and most useful will actually end up on our first line at the end of spring. So again, progress is happening, but it feels unfairly limited because of how little I can do at one time. The old me would have products done by now and ready to be packaged, she would have designed the logo, created a website, written ten blog posts and scheduled them out in advance, and started working on the final draft of the business plan. Unfortunately I am not the old me, and my current level of ability will just have to suffice. I know i can make it work, I just need to stay consistent. Having this driving focus on an overall goal for the future is helping me stay sane during this gnarly week of flare up, but it’s also making me a little crazy. If that makes sense.

I am aware that I cannot continue pushing this hard indefinitely, and yet I’m not ready to decrease activity. I have finally found a few passions left in my life, like painting, writing, helping friends during difficult times so I can be around when they are thriving again, advocacy, staying educated about clean eating and chronic disease research, designing, and starting our small business. I finally looked Chronic Pain in the eyes and told her off by doing things that are incredibly painful, and which take weeks to recover fully from, and enjoying them, instead of worrying about the inevitable fiery backlash from fibro and chronic fatigue and hypermobility. So even though the pain is seriously awful, I’m not finding myself ready to stop.

Maybe I’m just crazy. Maybe I’m being unrealistic and stubborn. Maybe this is false bravado. No matter the reason, I have tasks piling up that need tackling, and this business is no longer just an idea, it is happening, and so I have to keep pressing forward, pushing through the brain fog, this newest stupid injury, and the severe fatigue and pain, all in order to keep seeing the incredibly slow, but present, progress towards a higher goal.

I am slightly dismayed that throughout my life I have always wanted better and been willing to work on myself, but somehow measurable progress has still been so incredibly slow as to seem non-existent or even backwards at times. Even getting close to figuring out what is going on underneath the obvious is a long up-and-down journey that I am still on.

My one truth, and a major consolation lately, is that I have never passively allowed myself to suffer, even when I whine like it. I am always seeking some kind of alternative to my present situation, and I have nearly always achieved those goals. Often the changes were not positive like I intended, but instead were more closely recognizable as manifestations of the trauma sustained throughout my childhood. Basically, my reactions to the perceived ever-present dangers and perceived constant rejection from those around me are what have been reinforcing unhealthy coping, despite my best efforts. Knowing that puts some of the power back in my hands.

I am not a small child anymore. I can handle almost anything that is thrown at me. I am not helpless. I am not unlovable, my emotions are not disgusting, and I do not have to accept unfair criticism from anyone.

Phew, I guess I had a lot to get off my chest after not really blogging for so long. Sorry for the length of this mess of a post! Thank you for reading if you made it this far!!! ❤

Even with two black eyes and a very swollen and throbbing nose, I refuse to quit. Bring it on, Pain. Let’s see what I can get done today, despite your ugly presence. Keep trying to stop me. I’m not scared of you. Eventually I will be able to put you in your place, but until then, let’s be very clear about something: I own my body, and you, Chronic Pain, are just along for the ride.

Having this blog and meeting so many strong and wonderful individuals who are not defined by their illnesses has changed me in ways I would not trade for anything.

Chronic Pain Toolkit: Affirmations

Gaining Ground Despite Chronic Illness

Since I first started going down the rabbit hole into the land of stranger and stranger medical mysteries, I have been losing things.

For three years, all I could see were the things that were slipping through my fingers, and I grieved considerably for each loss. I lost my job, my ability to drive, my self-respect, my future, and even at one point I let myself believe that I had lost the ability to be a good mother when the time comes. My grief was so strong that it blinded me to the possibilities that were opening up in front of me even as other doors closed.

Change is scary, from going to a new school, being diagnosed with a chronic illness, or starting a new business, newness is challenging. For myself, I had to learn to accept that I cannot change the stigma against Fibro alone, and I cannot make my doctors or my boyfriend or my mom understand it, but I can and have found others out there who feel what I feel and struggle with burdensome illnesses.Through reaching out to people in similar situations, I am hoping we can bring out the best in each other, and that is exactly what I have found here. Within the chronic illness blogging community there is so much support and enthusiasm that I can’t help but get swept up in it all. My healing process didn’t really begin until this blog got up and running. Yet, I have to remember that even once started, healing does not look like a straight line, especially with illnesses and conditions I will have for the rest of my life. I will always have very, very, very bad days and then there will always be awesome days to balance them out.

There is considerable strength to be found in just living to the best of my ability. Easier said than done, but a goal for me to aim towards!

There is no simple way to make the illnesses we face easier to confront, or even to take away the pain for a single day, as much as I wish otherwise. We spend our days fighting an invisible monster called Pain, and every day he is there when we wake up. We do the best we can, whether we are battling our illness from bed, from crutches, a wheelchair, a scooter, or our feet, every day is a marathon for us.

When we start to feel like we’re losing control of everything around us because of chronic illness and pain, the place where we have most control is in our self-care and self-love, which I couldn’t even fathom until I began to write a page of weekly affirmations. In the midst of the fear and chaos is acceptance. If you are in the grieving stage, I promise, acceptance is the best thing since sliced bread. It doesn’t happen overnight and it doesn’t happen easily all the time, but when you look back, you’ll see how far you’ve come. And it is worth it. We all deserve to accept ourselves, illnesses and all. If acceptance is an area you struggle in, why not try jotting down self-compliments or reassurances. They can be all the things you wish people told you, it can be all the things you believe about yourself, it can be as simple as saying “I am passionate about writing and I have a lot to say”, “I deserve to be loved”, or “last night I got enough sleep” or as complex as you need them to be. I feel like I’m not even writing when I do this exercise, the words just spill onto the paper from somewhere deep inside of me. I guess I must have been not allowing myself to think positive, comforting, reassuring things for a long time. I don’t know why, but I do know I have an awful lot of affirmations to get off my chest.  Certain ones I find myself writing over and over again each week and sometimes on other days as well. These seem to be things I have a hard time believing, but which are important to me none the less. Someday, hopefully even these hard-to-digest messages of self-love will begin to sink in, and gradually, as many of the other affirmations have, they will become a part of every day outlook. Affirmations have helped me gain so much that I didn’t even know I was missing. So instead of losing things, now I can focus on what is still there, what is inside me that I can love and share with the world.

If you’re looking for a good way to start 2015 off, writing down a list of positive things about yourself can change your perspective on life. It can give you that boost of self-esteem and motivation you were looking for. It’s easy, painless, and you don’t have anything to lose! I bet you will be amazed by what you find out when you start writing. ❤

I hope that everyone had a wonderful weekend!

If You Can’t Get Rid of It, Make Room for It

I cannot “fix” fibromyalgia, JHS/EDS, CFS/ME, Spina Bifida, or Occipital & Trigeminal Neuralgia. They are simply things I have to make room for in my life, understanding that I actually have a longer list of medical conditions than that by far, that are not going away on their own, and that have no cures. Say you found yourself in this position of going from healthy to completely unwell in less than three months. After a year or so, it becomes unbearable to the point of not being able to work a 9-5 job anymore, then not even a very part-time (12-18 hours a week) job, despite your very best efforts. No one understands what’s happening to you, including yourself. But it’s always something, it seems, every day. From crippling pain to autonomic dysfunction to dislocations to migraines to allodynia to candida overgrowth to skin lesions; name a symptom and it’s probably happened many times.

So this sucks, you think to yourself. I mean, sucks doesn’t even begin to cover it, but you grieve, you mourn, you see red, you get hysterical, you completely melt down. Allow that. It’s making room for the illness in your life. This part just hurts, on every level. But it’s worth it. There is so much happiness in life left, even with the things that have been taken away by illness.

I implore you not to not feel guilty for going after those things which please you, and which are still very much possible. Maybe this wasn’t the plan all along, but life is not over. It is being rearranged. You still have control, even when it doesn’t seem like it.

The guilt is the tricky part. Illness and pain can make you extremely bitter and withdrawn, and they can also make you extremely fierce, creative, and compassionate. Let’s be fierce, together!

I can’t cure myself, but I can and will continue to gain strength and happiness. In that spirit, I have been exploring new avenues that I couldn’t see myself taking before I was ill. The options to write, to be an artist, to be a graphic designer, to start a small business, to create and teach and advocate, all these things were possible before, but I had no idea. Now I know that I can do things in my life that will make me happier than any path I was on before. I have been through hell, and will continue to visit that territory throughout life. But I am not unhappy. There is plenty of beauty, life, love, and creativity left in me still. As there is so much beauty and love in you as well! ❤

Spoonies travel a lesser-taken road, but we do so in style, I believe! Especially when we band together for awareness and advocacy.

Invisible versus Visible Pain: Awareness

❤ ❤ ❤

Love that image.

Sadly, we start to use this sort of language against ourselves after a time… It has to stop! Shame and guilt need to be taken off the shoulders of the chronically ill and those in chronic pain, there is enough to deal with besides having to “prove our pain” to anyone.

No one chooses to suffer constantly. No one. We all want to be happy, healthy, contributing, but you never know what someone’s suffering amounts to unless you have to live under the same burdens and restrictions.

Considering the Emergency Room? Here Are Some Pointers to Keep in Mind if You Have Chronic Pain.

What to Do When You Have to Resort to the Emergency Room (When You Have a Chronic Illness)

A trip to the ER is no fun, no matter how you spin it. When you’re a chronic pain patient or someone with a chronic illness that can cause bouts of severe pain, it can be a complete and total nightmare.

A patient with chronic pain can help the Emergency Room staff to understand that their medical problems, especially pain, are a legitimate emergency by following a few guidelines and suggestions that will lessen some of the unpleasant drama of going to the ER.

Always bear in mind that the Emergency Room is a last resort, and Urgent Care will almost always turn away a patient with a chronic illness. Hospitals are so wrapped up in covering their asses legally that they have started turning away chronic pain patients much like Urgent Care does, even when the need for treatment is real and immediate.

Your regular healthcare team, especially your Primary Care Physician, is by far your best bet for getting help managing a chronic condition that is spiking out of control, but sometimes the ER is the only option. When that happens, here are some tips to help make your experience more manageable:

  1. Make sure that you have a regular physician who treats your chronic pain. That’s a relationship that all chronic pain patients should establish before they ever set foot in an emergency room. Without this all-important steady doctor-patient relationship, the rest of this list is not really possible. In terms of seeking out aid in the Emergency Room for a spike or flare of pain having to do with an ongoing condition or problem, even having a bad doctor is better than no doctor at all. If you are having trouble finding a primary care physician who actually does care, the best place to start looking are local and even national support groups for your condition(s). They will have lists of hospitals and even specific doctors in your area who have been a good match for others in your situation. If those doctors are not taking patients, don’t be afraid to ask their staff where they would recommend going or if that doctor can make some recommendations of physicians they know to be effective at treating your condition. This search can take a while, but always keep a PCP on file, if you at all can. Not having a primary person who writes your prescriptions and handles your referrals makes the staff in an Emergency Room nervous no matter what.
  2. Show that you have tried to contact your regular doctor before you go to the ER. If you have been in pain for five days and have not alerted your doctor, the ER staff will question how bad your pain really is. Even if the pain struck out of the blue that day, make an effort to contact your regular doctor first. ER staff will be more sympathetic to patients who have called their doctors and been told to go to the emergency room because the doctor was unable to see them. At least you’re showing you made an effort and only using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication. This is important, as unfair as it is, they will not give you proper care if you are using the ER too liberally. Having your physician back up your story is never a bad thing, it helps establish legitimacy and urgency, and can help push you through to getting treatment sooner rather than making your wait for four hours “just to make sure you’re really in pain” before giving you any medication or imaging.
  3. Bring a letter from your doctor. A letter from your physician, with a diagnosis and current treatment regimen, is a logical, completely reasonable thing to carry with you, particularly if you’re on a regular dose of opiates in today’s atmosphere of distrust and disbelief of pain patients. Always make sure the letter has your doctor’s name and phone number. That way, if ER doctors want to contact your physicians, they can. This is especially useful if you’re traveling or going to a hospital that you have never visited before.
  4. Bring a list of medications. Bring a list of your medications, instead of relying on memory. Usually the hospital will already have access to the list of everything that you have taken for the past several years, so don’t try to lie about it, you will only hurt yourself in the long run. Always be honest about medications you have taken or have been prescribed.
  5. Work cooperatively with emergency room staff. It might not be fair, but if a patient comes in screaming and shouting that they need pain medication right away, the staff isn’t going to like it. Being loud and distressed will call negative attention to your actions and makes hospital staff that much less sympathetic. You might be in agonizing pain, but the staff is going to be more concerned with “drug seeking behavior” than your well-being. So rather than demand things, try to work cooperatively with the staff, even if they’re not being cooperative with you.
  6. If you have an alert card or pamphlet explaining your condition, hand it to them and ask for it to be put in your file. For instance, I keep a card in my wallet explaining that I have Ehlers-Danlos Syndrome and detailing the worst parts of the illness and information that is pertinent to an emergency. I also listed my most severe medical allergies around the border of the card in big black block letters. It’s important for the staff to know what is going to cause more pain & what may help.  If you have a rare condition or one that is frequently misunderstood or which is conventionally thought to not cause pain, bring a relevant pamphlet from an awareness or advocacy group with you. Consider buying one of the brand new USB alert bracelets, pendants, or wallet cards. These plug into a computer in an emergency if you can’t speak for yourself, and they can be uploaded with as detailed medical information as you want, from medical history and current doctors with phone number and addresses to info like allergies, current medications, current medical concerns, and alternative treatments/supplements as well. Most manufacturers understand that a computer might not be nearby in an emergency and have a phone number printed on the back of the bracelet that you can call to access the information as well.
  7. Ask for a nurse advocate or make sure someone is with you. This will help you when trying to explain things to the staff. It helps to have another person there to advocate for you.
  8. If at all possible, use the same Emergency Department as the last one you went to, your pain will be that much more believable if you always use the same place. Plus, you might actually get doctors to take an interest in your chronic pain condition and maybe even other conditions that can cause a chronic illness patient to end up in the ER. Think about the ramifications that could have down the road for future patients!
  9. Finally, since there are a lot of easy-to-forget details in this list, especially in the fog/panic/blacking out that happen whilst in horrific pain, I like to keep a folder handy with all those details written down, as well as a copy of most everything I need to bring with me. It isn’t always updated with the newest things I’m taking, so I bring the bottles themselves if I am on anything different since the last list was written. Being organized shows the ER team that not only do you take your condition(s) seriously, but that you have done all you possibly can to avoid the Emergency Room and to only use it as a very last resort.

About two years ago I was turned away from an ER without treatment by an extremely ignorant physician (after toughing it out all night crying and screaming at home), I had to contact and be seen by my pain doctor the next morning and then was sent right back to the same ER, only this time I was told to have them call my pain clinic when I got checked in. I did not want to go back there, but things went a lot smoother the second time, despite my apprehension. I was given the correct sedatives for once, and no one yelled at me or gave me super judgmental looks. I was treated for pain, monitored, and released without being asked to pee in a cup or otherwise treated like an addict. It was the only decent Emergency Room experience I have ever had, other than being in constant, black-out, vomiting, excruciating, unrelenting pain for almost 48 hours prior to finally receiving treatment and not sleeping a single hour of that time, all from an Occipital Nerve Block injection that was supposed to be a diagnostic tool, gone horribly wrong. (Hint: If your gut says “Do not do this, it isn’t safe” then listen to your gut, or it probably isn’t going to turn out well. I knew in my soul that the injection wasn’t going to be a good thing for me, and I don’t even have a minor fear of needles.)

I haven’t been back to the ER since, I have to admit I have stayed at home through even worse pain than that episode since then. No part of my soul trusts the Emergency Room to treat me, as a 26 year old fibromyalgia and chronic fatigue syndrome patient with occipital and trigeminal neuralgia, Spina Bifida Occulta, Joint Hypermobility Syndrome / Ehlers-Danlos Syndrome, with damaged vertebral discs at the top and bottom of my spine and everywhere in between, just to name a few of my chronic pain conditions. None of that matters because what they see is a 26 year old who usually hasn’t showered in days, is twitchy and fidgety (pain makes me move nonstop sometimes), sweating profusely (a fibro symptom having to do with autonomic nervous system dysfunction or dysautonomia), has a hard time walking in a straight line, and usually I am extremely angry or panicky, one or the other. There isn’t a lot of sympathy for me if I don’t do absolutely everything right when I go to the ER.


It’s certainly not fair or acceptable, but the Emergency Room just is not cut out for dealing with us; the tough cases, the ones who can’t be “fixed” or “stabilized” because in hospital staff eyes, we are already stabilized and not in any immediate danger. Yet pain is dangerous. Chronic pain over a life time is more damaging to the actual structures of the brain than taking hardcore opiates every single day for the rest of your life. That isn’t to say that there isn’t some middle ground to be found here. I do not advise hardcore opiates for chronic pain on a daily basis, especially at my young age, because if I take heavy opiates now, years down the road when I need surgery or dose titration, eventually there isn’t anything else to elevate to by the time I’m in my late 30’s. That’s not how I want to end up. The only painkillers I currently take are tramadol and medical marijuana for breakthrough pain and seizure activity.
I have learned to make do, but it took years to figure out just how little I can do off of painkillers without my condition deteriorating. I’m still trying to adjust, trying to find the sweet spot between too much and not enough, and knowing that life with a chronic illness will always be a delicate balancing act.
I’m not just saying that heavy opiates are a bad idea, I actually used to take anywhere from two to ten 5mg oxycodone every day while I was working, and while it did not take the pain away, it made me more able to do things, more willing to put myself through pain over and over again all day long. I could still drive at that time, purely thanks to opioid medications, but I don’t think it was healthy to push so hard that I had to pop pain pills like mints, just to stay upright and not cry through my whole shift. At one point I was even on morphine every night to sleep just a couple of hours. Clinics were offering me methadone, which I vehemently turned down.
I had a rough, rough few months when my first visit with a brand new doctor ended with him taking me off oxy and morphine all of a sudden in the middle of a flare, no weaning, just completely off of opiates (and chronic fatigue/ADHD medication at the same time too) cold turkey without even the slightest heads up. I wasn’t even given tramadol by that asshole. I had to call crying in pain four times in one week before he would even write a tiny prescription for 12 (yes, one freaking dozen) during a two month long flare up! So humiliating. He also told me not to go to the ER no matter how much pain I was in. What a complete idiot. His favorite phrase was “at least you’re not in a wheelchair”. I could barely contain my hatred every time he said that or my other personal favorite: “you are a perfectly healthy young woman”. Not my weight, my blood pressure, my mental health, or my chronic pain conditions were healthy about me, so I was partly just shocked he couldn’t think of any reasons I wasn’t healthy.
Yes, middle ground. I understand that “as-needed” for a chronic pain patient can mean literally anything, from almost never to pretty much always. So I say with caution and leaning more toward the almost never side of things, “as needed” pain medication can save your life. When you need it, and you really need it, you know best, and you deserve to be treated correctly, efficiently, and even compassionately by ER staff. The above suggestions should help cut down on the emotional trauma that people with chronic pain often associate with going to the Emergency Room. In our greatest time of need, it would be nice to actually be able to count on getting help when we seek out this last resort in our coping toolbox.
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