Precious Diagnosis: What’s in a Name?
From my favorite blogger and one of my best friends in the whole world, this is a timely piece for rare disease month.
Radiograph of my Sorrows by Natalia Drepina
Even if it’s a terrible diagnosis, you crave even the worst titles, just to have a name. Just to put a label on what your body is experiencing. You dream of a diagnosis for the madness eating away at your body and your life.
You want to scream when test after test comes back normal, appointment after appointment with no answers, and you wonder how much longer your body will hold out like this! Each frustrated physician and healer is at a loss and they know anything more they try could likely only make you worse. So one by one, they set you free into the river of uncertainty to face the un-named beasts in you alone– ALONE.
Instead of one diagnosis, you have a list of conditions that you don’t feel are your own. They are more like guesses your…
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Seeing Possibility
Making Some Kind of Peace With My Pain
During my descent into illness, all I could see was what was being taken from me. When chronic illness kept routinely shaking up my life in new and horrible ways, I started to believe that there was nothing to look forward to, and the injustice of going from perfectly fine to not fine at all was unforgivable. It’s natural to feel that way, everyone grieves uniquely, and we lose a lot in the transition from well to sick. Grieving is permitted, encouraged, and part of the process of regaining strength. It’s not pleasant to be in that place, where all roads lead away from your dreams, all days blend together because of the pain, and because of all the sadness, fogginess, stress, and panic of becoming suddenly or gradually disabled. You may in that time lose track of who you are for a second, or maybe for a lot longer, because it seems like it is all going to be taken and not one scrap of the person you were before will be left.
Surely, in this storm I will blow away, and all that will be left is the space I take up and the burden I place on others.
That is one stage, and it is not possible to skip steps in the recovery process without being forced to revisit them later.
Take a minute with me to envision what you have lost. For instance, as my illnesses multiplied and progressed, I lost my ability to work, drive, plan a schedule and stick to it, work out consistently, go where I want when I want, grocery shop on my own, pay bills, feel accomplished, cook, clean, and there is the scary possibility that I may not ever be able to have children with my specific problems. I have lost confidence, I have lost my sense of place and I have lost my mission in life. Or have I?
Okay, upon second look, yes, I have lost the ability to drive, but not my ability to travel with others and see through other’s eyes. I have lost my ability to work a traditional job, but not my ability to create a new legacy through artistic endeavors. I have lost many friends and relationships, but those were not the people I wanted and truly needed to find. I have lost the ability to plan ahead, but found the freedom to enjoy the spontaneous little joys my body does allow. There is a good chance I may not be able to give birth, but I can still have a family built on love, and maybe some day I can even adopt. I have lost confidence but then found it again in the oddest of places, like this blog and in my artwork and jewelry making. I lost a lot, yes, but the gifts that took residence in those spaces and voids in me where I felt loss and grief are astronomically more important to me now than what I lost ever was. What I have now cannot be taken away. It cannot be undone or shattered by someone or something external. I can and do still have dreams and goals, and they are not all tinged with the bitterness of “but only if I could just ____. It would be so much easier.”
Easier is not always better. It might feel better for a while, but I’m the kind of person who has always needed a challenge to rise to, a place to test my strengths and get to know my weaknesses so that they can never destroy me. Illness and hitting rock bottom emotionally, physically, and mentally was that place. With the door to my previous lifestyle, abilities, and routines firmly shut behind me, and no idea where I was or where I could go from there, I somehow found the strength to lift my head and take that first stumbling steps towards the only tiny pinpricks of light I could make out in the inky void in front of me. In the beginning they seemed either so small or so far away that the journey was certainly pointless, but still, I missed daylight and fresh air too much, so I put one shaky foot in front of the other and moved, as slowly as I needed to, as fast as I could. Sometimes I crawled with my head down through narrow passages, in the direction I thought I had seen the light, and sometimes I got lost and had to double back. Sometimes the light flickered and I felt a cold rush of terror and emptiness.
At those times, I feared I would be stuck forever in this place, and there were points where I was more certain of that than anything else, but still I wanted more, and still I crawled toward the promise of less stale air, away from the rotting dampness, and towards the possibilities that those lights represented. I imagined that when I found them they could be so many different things, maybe just a forgotten candle abandoned along the path by someone else who had gone before, or maybe it would be the full daylight streaming in through a tiny crack in the darkness. Maybe I could find that crack and widen it, pry it apart with my bare, bleeding hands, sucking gulps of fresh air into my screaming lungs.
Of course I stumbled and fell, sometimes a great distance. I fell all the time. Falling became a part of the journey, and one I became increasingly comfortable with. Go ahead, knock me over again, throw me off a cliff. I taunted the empty darkness, not out of bravery but out of stubbornness. Clinging to any surface that seemed stable, my feet learned to anticipate the road ahead a little better with each steep, scrabbling climb and desperate push to make it just one more tiny, trembling inch towards the light.
As I pulled and climbed my way through the darkness, I began to see a glow ahead, not the bright streaming light of day, but I large mass of light ahead, hazy and difficult to make out, but there, somewhere ahead of me, above me. My hands clawed at the side of the cliff face I was travelling up, searching for the edge, finding it and then pulling for what seemed like forever, my arms burning and shaking, my fingers slipping on the stone. And then I was on top of the cliff, looking back at the dizzying heights I had climbed to, so far that I couldn’t even see where I had come from. There was just the black abyss in the direction I had previously travelled in. I turned my back to the deep darkness, prepared to continue my escape, not sure how I had made it so far or how far I still had to go.
As I faced my new direction suddenly there were hundreds of lights, some tiny, some larger. I was overwhelmed by how many of them I could see, in every direction. The darkness behind me gaped open, reached out its fingers for me, but I knew the darkness was a lie now. Just like going outside of a large city to watch the stars wheeling in the sky in some dark corner of the wilderness, I was seeing what had lain ahead all along for the very first time. It had all been there already, but like the starry skies, hidden by nasty pollution, obscured by the much dimmer lights seeping out from under the doors that had long ago slammed shut behind me, and blocked by rainclouds I could not control. Every period of pitch darkness that I learned to live through, every cliff face scaled, every strange twisting path taking me farther and farther from the roads I had already traveled, had been leading me here, to the warm mass of lights joining together.
Then without knowing where it had begun, I was on a road again, a completely different road. It was a clear, brightly lid road, with others traveling along side me. I did not know how long they had been beside me, but I saw these souls carrying each other even when they themselves were weary and their feet dragged. They pushed each other forward with encouraging words, with outstretched hands, and the path became more and more filled with light. I began to follow their example, finding people who had fallen down and supporting their weight until they could support themselves again. Ahead of me I could feel the first rays of sunlight as the night began to dissolve into the distance behind me.
I kept moving, my arms linked with hundreds of other men and women who were determined that we would make it, all of us. As the sun rose higher, thawing the frozen fingers of my traveling companions, turning our lips from blue back to pink, I could see that it was not merely hundreds I travelled with, but millions. As far as the eye could see, the crowd extended, all joined together, all making sure no one fell behind. Suddenly I remembered that in the beginning, when I fell, I didn’t always fall that far, and it had been those outstretched hands pulling me back to safety when I teetered on the edge. I may not have realized it at the time, but the small candles littering my path, the tiny flickers of warmth and truth, each beating heart that extended me love, had been with me in the cold, lonely night, too. We had not seen each other yet, but we were all heading in the same direction, some crawling, some sprinting. Fear evaporated, all memories of bleeding alone in the dark overtaken by the friendly faces all around me, the warm and calloused, well-traveled hands holding mine.
From the blackness where I had first found myself, alone and terrified, to the uncertainty of the tiny branching paths leading away from everything I knew, to the first time a hand touched mine in the darkness, and finally to the moment that the sun began to rise and I knew things would be better soon, this had been a four year journey of climbing out, scraping knees and shoulders, muscles burning, hands shakily feeling out the rough outline of objects blocking my path, while my feet unconsciously learned to avoid the dangerous patches of shifting ground that appeared frequently. The many falls, the hands who helped me stand up again, the unconditionally loving community of fellow travelers who had all stumbled their way, thinking themselves alone, through the darkness. Each person beside me now was as insistent and stubborn as I was. We had not been willing to die in the valleys and ravines that life had flung us down. Working together, even when we didn’t realize it, we had found allies in those who also fled the same nightmares. The bright of the sun rising ahead of us made the long, harsh journey fall away. I could see people hugging, celebrating, and smiling, soaking in the widening rays of light as they congratulated each other. There would be other dark nights to travel through, but now we were not alone, we were moving steadily away from the vast emptiness behind us, with millions more beginning the final stages of their climb towards the daylight, and millions more up ahead.
The climb out is shorter in the end if you pace yourself, if you do not fall as often, if you survey your surroundings with purpose, resourcefulness, and an eye for opportunity, but also for danger. Making the journey meant frequently taking a moment to scan the horizon for trouble looming and for the possibility of new paths appearing in front of me at any time, in any place. It meant that I could pause, but I could never stop. Even suddenly in the middle of the darkness, there can be a new object in your line of sight that wasn’t visible just a few steps back. You don’t know what’s out there until you start moving away from the doors that are already closed and seek out the road(s) leading to what is still possible.
Up until this past year, there would have been no way to know what was up ahead, or even what direction I was travelling in. I was doing my best, but my best didn’t seem nearly good enough. All that surrounded me was loss and grief, and though I tried to focus on other things, my mind was always drawn back to the negatives. Trapped in the cage of chronic illness and chronic pain, I saw myself as useless, I imagined my future was full of only mounting grief, I felt horribly selfish for getting sick, I could find nothing to love about myself and could not see how anyone else could love me either. Things were bleak and dark, unfair, stacked against me, and I didn’t want to have to be the one who was stronger than I felt. I wanted to scream, I didn’t want to be inspirational, I didn’t want to be friendly, I didn’t want to learn mindfulness or try to be more optimistic, I didn’t want to try to build a new, healthy life within my limits because the limits seemed ridiculous and, well, limiting. I just wanted a cure, and anything less was inexcusably, woefully inadequate. And that’s okay. That’s a part of the process. Some of us stay there for longer than others. There is no right and no wrong here, and no shame, only the eventuality of picking yourself up, or taking the hands that are offered, and trying again no matter what. There’s no denying that when you feel like you’ve lost your purpose in life, it’s tough to see the point in putting one foot in front of the other.
Who knows what drove me forward out of that place, who knows what strength I dug deep to find in myself, or if it even was my strength. Who knows where I found the courage to ask for help, or to take the hands outstretched to me, when I didn’t know what I had to offer in return.
All that matters is that I made it, and that others have made it, and that you will too, one day. In the future, there will be a time when you look back, and you will see how far you’ve come and how many people have helped you along the way, and you will marvel, because wasn’t life supposed to be over? Wasn’t everything supposed to be spiraling further and further into the realm of tragedy? But it isn’t either of those things.
There are awful parts, there are many of them, and there are times when I pray for death because I hurt so much and I have nothing that helps, but from here on out, I can remember that I am always arm in arm with millions upon millions of other pain warriors. Even through the darkest night, the men and women I march with are always right beside me. They make sure I get up when I fall, they pull me along when I cannot walk, they lend me light when my own candle burns out.
There will be other doors in my life that slam shut on dreams I have held dear. Chronic illness is not the only fight I will have to survive, nor is my struggle with illness and pain over. It continues, and I continue to move towards hope and light all the same. There is no going back, there is nothing there for me. Only sealed doors. If you are in that same murky darkness, you are not alone. The paths away from the places you have been shut out from, take them, take any path, because I promise that where you are heading is better than where you have been. Maybe not tomorrow, or the next day, but eventually. Daylight is coming.
The biggest, shiniest piece of advice I have to offer on living well with chronic illness is that the company here does not suck. In fact, that person whose writing, photography, art, or youtube channel makes you feel like they truly understand you, go talk to that person! I can’t promise something magical will happen, but you never know. Magical things have definitely happened for me in the friends and community I have made online, and every time a new and beautiful friendship arises, it has started with an honest expression of admiration that turned out to be very, very mutual.
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Neurontin and Lyrica are a Death Sentence for New Brain Synapses
Exactly why I’m so glad to be off of it now!!! Lyrica is an awful, awful drug that made me gain so much weight and lose the ability to feel any pleasurable stimuli. My brain and my sense of self slowly floated further and further away. Now that I am successfully free, it’s like seeing in color again for the first time in years.
These blockbuster drugs were approved for use even though the FDA had no idea what they actually did in the brain. A shocking new study shows that they block the formation of new brain synapses, drastically reducing the potential for rejuvenating brain plasticity – meaning that these drugs will cause brain decline faster than any substance known to mankind…
The researchers in the above study try to downplay the serious nature of the drugs by saying “adult neurons don’t form many new synapses.” That is simply not true. The new science is showing that brain health during aging relies on the formation of new synapses…
There’s no reason to be so alarmist about Lyrica and Neurontin. Yes, patients need to be informed about the history of these drugs, especially since doctors don’t know how they work. In fact, one doctor who wanted to prescribe Lyrica for me…
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Gift Ideas for People with Chronic Illness and Disabilities
This is a truly comprehensive list of gifts that spoonies will love to receive for the holidays! My beautiful friend, ABodyofHope put together a really amazing Spoonie Gift Guide, I’m so impressed!
I’m not just saying that because she featured my Etsy shop, The Hopeful Spoon (hopefulspoon.etsy.com) in her clever list, either!
If you are shopping for a loved one with a chronic illness, long-term illness, or disability, you may feel unsure of their needs, wants and special daily circumstances. Most of these gifts are either for comfort or meant to inspire, yet are still appropriate for someone who is mostly confined to their home or uses a walking aid, if applicable. Here are several gift ideas along with advice to help you shop (from someone who has personal experience with chronic illness, and great friends and family.) *Starred shops are run by disabled sellers who work extra-hard to support themselves.
Internet Subscriptions allow your chronic friend to watch movies and television any time instantly from anywhere. Especially on those bad days when doing nothing but resting is the best and only option, distraction therapy like settling in to great movies and television is a wonderful gift they will certainly thank you…
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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
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:
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.
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Harms/Benefits of Somatic Symptom Disorder
Wow. Just wow. There are NO benefits!
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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The Autonomic Nervous System & Why It Matters
Dysautonomia Awareness Month: October 2015
Somehow, dysautonomia and all the illnesses under its umbrella have continued to be brushed off as a woman’s issue, exaggeration, not a big deal, “just live with it”, “I get dizzy sometimes too, have you tried drinking more water?”, “come on, I bet you’d feel better if you just got up and got out of the house”, or everyone’s favorite, “You don’t look sick, though.” As if every POTsie hasn’t tried slugging back a dozen bottles of gatorade and coconut water per day for weeks on end, as though we somehow prefer lying in bed or using a wheelchair to get around and depending on our friends/families for everything when two years ago we could bike or run as far as we wanted, as if we haven’t all tried to convince ourselves in the beginning of our illnesses that it might just be in our head and gone out to do the thing, only to pass out doing the thing, or before we could do the thing. And what on earth does sick even look like?! No one can answer that question, I’ve found.
I’m putting salt in my coffee as I write this, and I have 32oz of water in a quart sized mason jar lined up behind that which I must drink just so I can take a shower without falling on my face (again). After I get out of the shower, the heat will have made all the blood pool in my stretchy veins in my legs, which will be extremely puffy and swollen and sting like crazy when my feet touch the bath mat. I won’t be able to dry off, most likely, so I’ll wrap up in a towel and cling to the walls on my way to rest in bed for twenty minutes, at which point hopefully I will be dry and slightly recovered. I will still be dizzy, hot-flash-y, have a bright red line across my nose and cheeks, and I will probably feel very nauseous for a few hours, sometimes even the rest of the day, but I will push on, salting yet another cup of coffee, salting my food, chugging water throughout my afternoon and evening, and I will struggle through my physical therapy exercises, I will quite possibly be too weak to pull my own damn covers over my body tonight, and that’s life with a very mild case of POTS. I’m one of the lucky ones, I can count my falls on my fingers instead of by the dozens. I’m lucky because in the morning when the blood pooling is at its worst I can lift my own legs, lean them up against the wall and flex until the blood goes back where it needs to be. I’m lucky that I can take a shower by myself at all, even if it’s kind of miserable. I’m lucky that if I bend over I don’t necessarily land on my head every time. But I know so many wonderful people who are not so lucky. I’m lucky that I’ve had my symptoms my entire life and they haven’t taken the sudden turn for the worst that I’ve seen happen to so many friends. So I do all the things (just less often than I used to) that my autonomic nervous system make so very complicated, and I try my best to only state what my reality is, rather than complaining about it. Life is this way, I cannot change it for myself or my loved ones. All I can do is educate others, soak up as much knowledge as possible, and keep trying my best to reverse my symptoms slowly over time.
October is Dysautonomia Awareness Month.
Please help us spread the word about malfunction of the autonomic nervous system and the many chronic conditions it can cause. There is no cure for dysautonomia, it is an invisible illness, and from day to day the symptoms swing between severe and less severe, so life with any of these illnesses is a roller-coaster, to say the least.
No one bothered to teach me about the autonomic nervous system. In a perfect world, doctors would explain these things to patients who are experiencing classic symptoms of ANS malfunction, as I am, and they would explain just how involved the ANS is in so many processes throughout the body. Normally, when you are in pain or experiencing stress, your autonomic nervous system ramps up your blood pressure, makes you sweat, and elevates your heart rate. When the pain or stressor is gone, your ANS should quiet…
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A Spoonie Poem for All With Chronic Illness
My friend Misty is a Lyme Disease fighter, and she’s been fighting it for more than fifteen years, though she was diagnosed within the last two years, about the same time I found out I had fibro. We grew up in the same small little town towards the Oregon coast, and since I never went to high school with her, being sent off to private school instead, we didn’t have an opportunity to speak for many years. Thanks to the magic of facebook, we are back in touch. I’ve learned a lot from Misty.
In addition to being a totally courageous and fabulous warrior kindred spirit, she is also a mom to two little ones. She just had her second, against all odds, against everything she’s been told by doctors about her prognosis. She keeps searching for a cure on her own, she keeps educating others about tick borne diseases, and she keeps building her family. She fights LD with a holistic, carefully researched approach. That kind of honesty and determination deserve some love. Though I wish she had her own blog to record her thoughts because her writing is incredibly strong and poignant, you can understand why a mom to a little boy and a new baby girl, a mom who suffers from advanced Lyme Disease, does not have the energy to keep up a blog. When she posted this poem on her facebook, I had to ask if I could share it on her behalf, because I’m feeling really lost and this piece of writing calmed me down and reminded me that as much as I’m feeling rejection right now, there is a lot of love in the spoonie community, enough to make up for what I’m missing. We are never fighting chronic illness alone, no matter how geographically separated we are, we spoonies do such a great job of always lifting each other up with what little energy each of us has.
I’m really delighted that Misty said I could share her beautiful poem, and I hope it helps someone else feel less alone and more understood.
THIS IS DEDICATED TO ANYONE SUFFERING FROM CHRONIC ILLNESS:
by Misty Perkins
when all your talents are unusable
All your intelligence faded away
That spark you had has flickered
When all your motivation taken away
When all the things that define you are gone
what is left at the end of the day?
When memory fades
All you feel is confusion and rage
When your bones ache
And your body disobeys
How do you answer when they call your name?
Are you really you, when you’re not the same?
When you can’t find yourself
And you’re lost in a daze
Does anyone care to trouble with the maze
Will they see you there, or pass on by
Will they hold you tight
Or watch you cry
When you have no one else, and you’re lost to yourself
How do you cope, when no one can help?
I don’t have the answers to those questions, but I am closer than I was a few years ago. Progress, not perfection!
Thanks you, Misty, for allowing me to put your poem on my blog so others could benefit from it too.
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Staying Present During A Flare Up
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Ehlers-Danlos Syndrome Medical Emergency Information Cards
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
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Chronic Pain Awareness Month
Here we are again, a year later, another Chronic Pain Awareness Month. I’m actually still completely on board with everything I wrote last year.
Oops, I almost forgot, it’s also a happy one year blog-iversary for me on WordPress!
September is Chronic Pain Awareness Month
I hear it echoed over and over again by my friends, my self, and chronic illness writers across the web. The hardest part is getting those around you to understand what chronic pain takes away, not only from your physical capabilities, but cognitive abilities, focus, social functions and so many other things, too many to list. What the general public and even caretakers and close friends may not know is that chronic pain changes everything, from taking a shower to driving to thinking clearly in a meeting to not cutting a major artery in a surgery. Some days, I feel lucky to have done the dishes even if I did nothing else that day. Sometimes just surviving is overwhelming. If I can do nothing else, on my days when I am resigned to a chair or the couch, I want to help spread the word about the…
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INvisible Project – Emily Lemiska | Klippel-Feil Syndrome
Like any fourteen-year-old preparing for high school, Emily Lemiska felt self-conscious about her appearance. She wasn’t worried about her weight, hair or skin. Emily was self-conscious about her abnormally short neck. She asked her parents to make an appointment with her pediatrician to take a look. Emily, her parents and her doctor alike were shocked when an X-ray showed she had Klippel-Feil syndrome (KFS).
via INvisible Project – Emily Lemiska | INvisible Project.
Klippel-Feil is a spine disorder characterized by the fusion of two or more cervical vertebrae, which decreases range of motion and flexibility in the neck. It is known to cause pain, especially later in life, and increases the dangers of even minor trauma to the neck. With reports estimating the condition occurs in one in 40,000 live births, KFS is considered a rare disease. Emily’s case is even more atypical in that seven of her vertebras, C2-T1, are fused.
Fortunately, Emily was asymptomatic, with no pain or discomfort. Nor did she appear to have any of the additional abnormalities – ranging from heart defects to hearing loss – sometimes associated with KFS. Although she could no longer participate in some of her favorite activities like playing volleyball or riding rollercoasters, which put her at risk of whiplash or other injuries, she was able to maintain a normal life. While doctors continued to monitor her neck annually, her health thankfully stayed the same. Although she felt a little isolated because of her condition, for the most part, instead of worrying about KFS, Emily was able to worry about the usual teenage woes like boys and grades.
Determined to experience life to the fullest, Emily left her small town in Connecticut to attend Northeastern University in Boston. She excelled in her classes, formed friendships with a tight-knit group of honors students, and met her now-husband, Dan. She was extremely active in extracurricular activities, serving as editor-in-chief of the literary arts magazine, vice chair of student media and copy editor at the newspaper. Even with her busy schedule at school, she managed to work part-time and volunteer on a regular basis.
In 2008, after a semester abroad in Barcelona, Emily graduated summa cum laude with a bachelor’s degree in English. She accepted a position at Mass General Hospital in the public affairs department, where she served as editor of the hospital-wide newsletter, spearheaded communications campaigns and interacted with local media. Her job was chaotic at times, but she loved it. She took pride in her work and became a valuable asset to the team.
Emily found an outlet from her demanding job in the form of running and weightlifting. She liked the way physical activity made her feel, and the doctors who continued to monitor her encouraged an active lifestyle. She had no idea that an upcoming five-mile run would change the course of her entire life.
That springtime “fun run” around the Charles River in 2011 would be the last time she ever ran. The day after the race, Emily was startled by brutal shoulder and neck spasms that crippled her with pain. When they didn’t subside in a few days, she made an appointment to see her doctor. He was perplexed. X-rays and MRIs didn’t reveal any reason for her sudden symptoms. He assumed she strained a few muscles, prescribed Valium and a neck brace, and suggested taking it easy for a few weeks.
The next two months were torture. Emily couldn’t use her arms or lift anything without excruciating muscle pain; even typing at work irritated her shoulder muscles. With every movement, her entire spine felt as though it was being yanked. Walking and riding the bus to and from work became dreaded endeavors, and any vibration caused unimaginable discomfort. Getting through the workday became her sole focus: she quit exercising, stopped volunteering at the local library and declined invitations from friends. Dan and her two roommates had to help her with even the smallest tasks, like making dinner and cleaning.
The symptoms only intensified. In July, Emily woke up before dawn to discover her left side completely numb. Terrified, she called her parents and then took a taxi to the emergency room. Again, the doctors were at a loss.
The ER visit led to a consult with a neurosurgeon. Within minutes of reviewing her neck imaging, the physician told Emily and her dad that she had another abnormality besides fused vertebrae: a tethered spinal cord. This neurological disorder is caused when spinal cord tissue attaches to the spinal column, limiting the movement of the spinal cord. He also discovered that in the same area, Emily had diastematomyelia or a split spinal cord. In hopes of halting the progression of these conditions and lessening the pain, he proposed emergency neurosurgery to untether her spinal cord.
Dan’s commitment never wavered despite the stress on their relationship. In fact, he embraced Emily more fully than ever, proposing to her three days prior to her operation. In the days leading up to surgery, Dan began referring to her as his “brave little toaster,” a reference to the 1987 Disney movie about an animated toaster who faces many obstacles on his journey to find his owner.
The six-hour surgery, by technical standards, was a success, and the spinal cord was freed from the spinal column. After seven days in the ICU, she went home to Connecticut to finish her recovery. Determined to return to normal life, Emily went back to work only a month and a half later. She immediately realized she had returned too soon. The pain returned quickly and with vengeance.
For the next year and a half, Emily put on a brave front as she tried to keep the life she loved. Work was excruciating – she would sneak off to lie down in the conference room, come in late and leave early, and work from home as much as possible.
“I was absolutely miserable, but too stubborn to show it outright. By the time I got home at night all I had the energy to do was cry. I felt completely dehumanized by pain.”
Weekends were no longer spent enjoying all that Boston had to offer. Instead, she would lie in bed, trying to recover from the week before and prepare for the one ahead. All the while, the muscle spasms and nerve pain were unrelenting.
Her frequent doctor visits left her discouraged as well. While following the doctors’ suggestions, nothing subdued the pain. Because her muscles were irritated and her spinal cord increasingly sensitive post-surgery, treatments like physical therapy and injections would sometimes even exacerbate her issues.
In December 2012, Emily made the difficult decision to leave her position at Mass General Hospital. Much of how she defined herself was her successful career. Quitting was a huge loss, but she had no choice. With Klippel-Feil being a degenerative syndrome, Emily had to slow down. She needed to change tactics, and instead of constantly playing defense against her aggressive symptoms, she had to go on the offense. It was important for her to protect her baseline so as to not regress further.
Back in Connecticut, Emily and Dan moved in with her parents for six months before finding an apartment nearby. Emily’s dad now drives her wherever she needs to go, and her mom, a registered nurse, attends all of her major doctor’s appointments. This extra help has been much appreciated – knowing that Emily would not be able to work, Dan is attending law school in hopes that his career might make enough income for two.
To manage the pain, Emily takes more than 10 pills a day. Eager to be free from the side effects of her medications – including fatigue and mental cloudiness – Emily continues to pursue treatments that don’t come in tablet form. She and Dan also hope to someday start a family, and the drugs she takes are not conducive to pregnancy. Among the options she is considering is a spinal fusion surgery. This would entail implanting rods and screws to reinforce her spine. Although it might be her best option, there are great risks involved, and doctors are not sure whether it will help significantly. The rarity of her case means it is impossible to know whether it’s the right decision – there is nothing to compare to, no KFS studies to point to a positive outcome.
If she does choose to have surgery, Emily knows that it may not be a full solution. She hopes that the right combination of Western medicine and complementary therapies might bring relief. An epidural nerve block, for example, decreased nerve pain in her face for a short time. Acupuncture and massage also help with the pain, as does wearing a neck brace and heat and ice therapy. To keep the rest of her body active, Emily stretches every day, goes for short walks several times a week and recently began swimming. All of these activities require modifications; for example, she swims using a snorkel mask to avoid having to move her neck to breathe. But Emily says that doing an adapted version is far better than doing nothing at all. The goal of being a mom and publishing her personal writing one day drives her to stay positive and proactive during her search for better answers.
Emily’s life has completely changed due to the progression of her disease. She has had to redefine herself entirely. Not being able to work, having put such emphasis on her job, has been a major loss. She misses her hobbies, like running, playing the piano, cooking and volunteering. It especially bothers her that she can no longer help others, but instead, is the one who constantly needs help.
“It is hard to be 28 and unable to enjoy life as much as I want to,” she says. “My to-do list and my body don’t see eye-to-eye. Each day I have to find a balance between pushing myself enough to feel accomplished, but not so much that I’m hurting myself.”
Emily still does the things she loves, but in small doses with lots of rest in between. And even though her activity is limited, she says she never feels bored. To keep busy, she reads, listens to podcasts and TED talks, takes online courses, meditates and writes. She continues to do occasional writing projects as a freelancer, but only as the pain allows. She also enjoys taking trips with Dan and having friends over to visit. Emily jokes that even with all she does, it’s difficult not to feel like a professional sick person. Much of her daily routine consists of taking care of herself, scheduling appointments and dealing with insurance and disability paperwork.
While initially denied disability earlier this year, thanks to help from a state health care advocate, she was approved in September after a long appeal process. The stress of being disbelieved and misjudged was difficult to take. Knowing there is a negative public view of those needing to use disability benefits, she wishes others understood that the majority applying for help really need it. Like her, they want to work but are truly unable to due to severe health limitations. Without assistance, she is incapable of supporting herself. In fact, she and Dan had to rely on food stamps for a few months just to get by.
Emily is not ashamed talking about her personal trials, even financial ones. In fact, she is very open about the truth many in the pain community experience every day, even when it is hard for others to hear. She feels if more people were open about their hardships, there would be fewer stigmas and less misunderstanding about chronic pain. She believes sharing struggles does not make a person weak or vulnerable, but shows strength.
For this reason, Emily keeps a blog. Not only is it personally cathartic for her, but it is also a way for family and friends to stay in the loop. Occasionally, posts are so widely shared that they serve to help increase awareness about chronic pain among individuals outside her inner circle.
Emily believes all who live with pain should keep some sort of blog. It is a way to express emotions that might otherwise be difficult to release, while allowing those who know you a chance to understand more about your challenges.
Through her experiences, Emily realizes that giving up is not an option. If she could stress one thing to her pain peers it would be to become an expert on their particular diseases. “You have to advocate and fight for your care. Answers may be difficult to find, but never stop searching or hoping. It may take time, but the medical community makes advances every day. You don’t want to be the one to give up the day before they find the treatment the helps you.”
Emily keeps abreast of developments in spine care through Google Alerts and by reading research abstracts from medical journals. She stays on top of her own care by requesting and reading her medical records, bringing a list of questions and taking notes during appointments, and getting multiple second opinions when necessary.
Emily also stays connected and informed through the resources she receives from the Klippel-Feil Syndrome Freedom. This small, grassroots nonprofit is trying to help people afflicted with the disease obtain support, strength and information. Created by other Klippel-Feil patients, the organization is personally dedicated to the cause.
Through this group, Emily finally met another individual with this disease, fourteen years after her diagnosis. Being able to connect with someone like her was life changing. For the first time, Emily did not feel so isolated and alone in the world. She had met someone who fully understood – and she was delighted to see that this fellow patient had two children of her own.
In her small way, she is doing her part to advance care for KFS patients. She is working on a KFS survey to collect data on patterns of abnormalities, symptoms and treatments tried. She hopes the results will help inform the medical community while empowering those living with the devastating disease. She is also planning a holiday fundraiser for 2015 – featuring a skeleton key holiday ornament – with proceeds benefiting KFS Freedom.
Cheerful and determined, Emily chooses to live in gratitude. While Klippel-Feil is progressive, she knows she is blessed with an amazing support system. Her parents, friends and husband go above and beyond to show her she is loved and that she is never alone. Her doctors aren’t sure how much worse her condition might become as time passes. But Emily is not giving up on life; rather, she is embracing it.
“People often seem surprised at how positive I am,” says Emily. “We all have a tendency to underestimate ourselves. No matter what life throws at you, you can and will find a way to live the best life possible.”
Resources:
Klippel-Feil Syndrome Freedom –
https://www.facebook.com/KlippelFeilSyndromeFreedom
Klippel-Feil Syndrome Alliance – http://kfsalliance.org
Klippel-Feil Syndrome Alliance Facebook page –
https://www.facebook.com/KlippelFeilSyndromeAlliance
via INvisible Project – Emily Lemiska | INvisible Project.
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Trigger Points In Neck Could Cause Dizziness via Fibro Daze
by Fibro Daze:
What Are Trigger Points
In simple terms, a trigger point is a knot that forms in the muscle and sends pain to other areas of the body. Trigger points cause the muscle to become tighter and shorten. When muscles shorten, they cannot go through the full range of motion, altering the way you move, sit or stand. This leads to strength and flexibility issues, creating more trigger points.
Research suggests that fibromyalgia pain is largely due to myofascial trigger points. Therefore, treatment of trigger points will help manage the pain associated with fibromyalgia.
Trigger Points In Neck That Cause Dizziness
The trigger points in the neck that can cause dizziness form in the sternocleidomastoid (SCM) muscles. The SCM is a large muscle along the front on both sides to the neck. It is made up of two interconnected muscle bands. These muscle bands start out from the mastoid bone behind the ear. One band connects to the breastbone (sternum) and the other connects to the collarbone (clavicle). The sternal band lies on top of the clavicle band.
The primary functions of the SCM muscles are to turn the head from side to side and flex the head downward. The sternocleidomastoids also help maintain a stable position of the head during other body movements. Any position where the neck is held in an awkward position can create trigger points.
Another function of the SCM muscle is to raise the breastbone when you inhale. The muscle can become overworked if you breathe with the chest, rather than with the diaphragm. The SCM also assists with chewing and swallowing.
Symptoms Of Sternocleidomastoid Trigger Points
The effects of sternocleidomastoid trigger points can be amazingly widespread. Symptoms created by SCM trigger points include:
dizziness, vertigo and imbalance
blurred vision, double vision, excessive tearing, reddening of the eyes, drooping eyelid and twitching of the eye
hearing loss, tinnitus (ringing, roaring or buzzing in the ears)
migraine headache, sinus headache
nausea
sinus congestion or sinus drainage
chronic cough, sore throat
stiff neck
cold sweat on the forehead
continual hay fever or cold symptoms
trouble swallowing
What Causes Sternocleidomastoid Trigger Points?
Trigger points can be created by postures that keep the SCM contracted to hold the head in position -for example, looking at a computer screen or driving. Keeping your head turned to one side or holding your head back to look up for extended periods of time, are sure to cause problems. Breathing from the chest instead of the belly can also overwork the SCM muscle.
Here is a list of activities that might create SCM trigger points:
- Overhead activities
- Keeping your head turned to one side
- Forward head posture
- Holding phone with shoulder
- Stomach sleeping
- Heavy lifting
- Falls and whiplash
- A short leg or scoliosis or awkward posture
- Stress and muscle tension
- Chronic cough or asthma
- Chest breathing
Sternocleidomastoid Trigger Point Release
SCM trigger points are easily self-treated. The SCM muscle group can contain seven trigger points. The sternal division typically has 3-4 trigger points spaced out along its length, while the clavicle division has 2-3 trigger points.
NEVER massage a pulse. If you pinch the sternocleidomastoid, rather than press it against the side of the neck, you will stay off the arteries.
Follow these steps to release the SCM trigger points:
- While looking in a mirror turn your head to one side. You will see the sternal branch.
- Grasp the muscle with your thumb and fingers curled into a C shape and turn your head back to face the mirror.
- Keeping your face looking forward, tilt your head slightly down and to the same side you are massaging.
- Press only hard enough that it feel comfortable and try to discriminate between the two branches. Each branch is about as big as your index finger. If you pay close attention, you should be able to feel them separately.
- Milk the muscle with short repeated up and down strokes, start in the middle and work your way up to behind your ear and then all the way down to the collarbone.
- If you find a spot that hurts, gently pinch the trigger point. Reduce the pressure until you don’t feel any pain. Once you’re below the pain threshold, slowly increase the pressure over 60-90 seconds.
Do this on both sides, a couple of times a day. Just go easy at first, and work at a pressure level that feels good for you. For a visual demonstration, you can watch the video and learn more at the original post, linked below.
via Trigger Points In Neck Cause Dizziness ».
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How Vanity Saved Me
All of this, right down to the 50 pound weight gain and the transition from gabapentin to lyrica, and my own detox experience off of both drugs (HORRENDOUS). All of this needs to be discussed with patients before a doctor decides to put them on Lyrica because opiates are being criminalized. Lyrica helps some people, but the rest of us feel poisoned on it. I’m so mad I let my doctor talk me into going back on it after I spent 7 months painfully and slowly detoxing off of it.
A note from the author-This is my personal story and though these medication may work wonders for some they had very negative side effects for me. Also, I am not a doctor, or a medical professional I am just sharing my experience.
How Vanity May Have Saved Me
and
Are your Meds Making You Sicker?
My sister was about to marry her high school sweetheart, I had done everything I could to lose the fifty pounds I had gained since I had been put on Lyrica and Gabapentin for my Complex Regional Pain Syndrome. Six weeks prior to her wedding I had spent in complete bed rest and to be honest I almost didn’t go, but I dearly love my sister, and I wouldn’t miss it for the world no matter how sick I was. Turns out I was really, really sick. It was four years since my diagnosis…
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A Book for Moms With Chronic Pain and Chronic Illnesses!
I know I haven’t been around in a while and I’m very sorry, life has been so crazy and my typing and thought process so poor that I’ve been taking an unintentionally long break. I have been writing every now and again, but mostly on Tumblr and Instagram, and sometimes for images I make in photoshop. Maybe I should post all those soon? I have also written about thirty drafts on WordPress that have been eaten, gone unfinished at the last minute, or that I am too embarrassed to post right now (and maybe ever). I will get back into the swing of things slowly but surely in the next month.
But, for now, I was stumbling through Amazon, and found this book and it just about made me burst into tears. I want kids so badly but because of EDS pregnancy dangers, my family history of Spina Bifida occulta and neural tube defects, the strong possibility that I have the MTHFR gene mutation, and a bunch of other factors, including a total phobia of doctors (I can’t even get into that on here or I will freak out and lose my relative calm for how much pain I am in and the fact that it’s 3:30am).
Though I want children desperately, what I really want and desire above a biological child is to adopt. I’ve always wanted to adopt. There will always be kids out there right now who need families. It seems so against my values to selfishly have a child via birth when I know there is little chance that child will not suffer like I do, and when I know that my ability to be a good parent to a very young child is never going to be strong enough. The thing is, I have a lot of love to give and knowledge to share, if not a lot of physical ability. Unfortunately, I will still struggle with very basic mom things, like shopping for clothes, or food for that matter, or taking them places at all, and cleaning isn’t getting any easier or more feasible lately though I try really hard. I’ve always wanted to be the perfect mom, but I think a large part of chronic illness is accepting that even healthy people don’t live up to that, therefore I certainly won’t.
I will be a good mom, I think, but I will have to work really freaking hard at it, and it will take everything that I have to give and more. Even if I do adopt a child, I am worried that I will feel like a failure as a mom no matter how much I try to cut myself slack for what I can’t control.
Seeing this book helped me a little. Knowing others are struggling with this, and that enough people even to sell a book about it.
Has anyone actually read this to their kids or bought it for themselves/future reasons? I hope there are more books like this out there by the time I am able to foster or adopt.
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IMPORTANT INFORMATION FOR THOSE WITH A RARE OR CHRONIC DISEASE
I came across this article on CrowdMed today. It is written by Jean Jahoor and she meant for it to help people who are newly diagnosed with a rare disease. She did a great job and lays out instructions in an easy-to-understand and in a well-organized manner. If you put the words, ‘your child’ wherever it says, ‘you’, this would be a wonderful instructional guide for when you are told that your child has a rare disease. Not only a rare disease. It would be helpful for any parent with a child with a chronic illness. It is not uncommon for to be given the wrong diagnosis at first in either case. For a child with a chronic disorder, it takes an average of eight years to finally receive a correct diagnosis. I think that if we used this information, it could possibly help us and our children to have…
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My Kingdom Of ME And A Print Giveaway!
Myalgic Encephalomyelitis is a devastating, awful disease. In the US we have to live with labels like fibromyalgia and chronic fatigue syndrome, those dreaded wastebasket diseases that lack distinction or consensus between medical professionals. My doctors over the last three years cannot agree on what I have, what came first, but mine started with a wicked fever after a car accident during a very high stress period in my life. The fever lasted weeks and then when it died back after that initial attack, it stayed on with me at a low grade for years. If I have ME, I want to know. I certainly fit that diagnosis after all my research much more than I fit fibro. My current flare has lasted three and a half weeks, from a period of ten days where I left the house three times and overdid it badly on two of those trips. I’m nowhere near back to where I was before those ten days. I don’t know when I will be.
I do know that I am sick and tired of living in a body that restricts my every action and exertion, be it physical or mental, and sensory overload is a big deal too. Everyone with ME deserves to have their condition recognized, diagnosed, and to understand what it going on with them, why graduated exercise isn’t working, why pushing through just stopped being a possibility.
We need more research, more treatments, with less shame and stigma. We need a cure. May 12th is a BIG DEAL, and here is why:
The Blue Ribbon © Sarah Allegra, Model: Katie Johnson. ME’s awareness ribbon color is blue.
May 12th – what is it?
We are rapidly approaching May 12th.
Why is that important?
May 12th is recognized across the globe as Invisible Illness Day. Though most people are unaware of its significance… which is part of the problem.
It’s a day for bringing more awareness to diseases like fibromyalgia, Chronic Fatigue Syndrome, rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, along with many others. Diseases which can have horrific, devastating effects on the person’s life, yet may not outwardly show. They can be completely disabling, and the patient still looks “normal” to the world.
And of course, this list includes myalgic encephalomyelitis, or ME, which I have.*
What ME is –
I’ve spokenquite a lotabout MEon my blog, so a lot of you probably know the…
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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.
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.
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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.
Thank you for sharing!
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 Info. That 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.
Thank you for sharing!
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