Resources for the Newly Diagnosed Chronic Pain Patient
Communities and Support:
7 Cups of Tea is a free, safe, online space to talk it out with trained active listeners. You can even connect with a therapist whose specialties are of interest to you. There is also a set of thorough self help guides to consult, including one for chronic pain.
This is my favorite meeting place for patients, there are so many members it’s almost unbelievable. Just by using it, you’re adding to a vast database of knowledge about chronic pain and illness that will help direct the future of how these diseases are treated. This is an awesome, powerful tool for change that allows you to; record all conditions & medications, including things you have taken in the past that did not work, keep a private or public journal, get in touch with thousands upon thousands of fellow spoonies with every imaginable condition, contact clinical trials and support groups, and find out all about new and alternative treatments being used by others with your conditions(s) and compare the average symptom improvement & rate of side effects. Useful both to the patients and to those researching chronic pain.
A great starting point for researching individual conditions, and at the bottom of the page for each condition there is a very, very helpful list of support groups, as well as related foundations, institutes, and clinical trials. Handy! I use this website constantly.
National Pain Report: This website takes polls of pain patients constantly and publishes the results for us all to see and talk to our doctors about.
My favorite place to research, research, research until I drop. This is a gem of curated peer-reviewed medical journals from across the world, some are only available as abstracts, but the good stuff is often free to read in its entirety! PubMed is a part of the US National Library of Medicine which is run by the National Institutes of Health.
A cutting edge teaching hospital with a multi-disciplinary approach to treating patients. They are on the forefront of new chronic pain, neurological, vascular, auto-immune, and genetic disorder research. Many people I know have participated in clinical trials there. For a couple years my current primary care doctor ran the Frida Fibro Clinic as its own separate entity within the hospital, but now it has been absorbed back into Rheumatology.
Below is the area for support and awareness for individual conditions. I am going to do my best to get a long, long list of chronic conditions that effect everyday living and keep updating as people ask for resources or tell me their specific condition/s.
The Ehlers-Danlos National Foundation is a great first stop if you or your doctor seriously suspects it as a diagnosis, because it lists physicians who are specially trained or have taken a special professional interest in treating or diagnosing Ehlers-Danlos, a frequently debilitating and painful hereditary condition that effects collagen production throughout the body.
The HMSA is the only charity offering both practical support and Information Standards Accredited health and care information to people who have a hypermobility syndrome. or who are involved in the care of someone with any of the hypermobility syndromes, including Joint Hypermobility Syndrome, Ehlers-Danlos syndrome (all sub-types), Marfan syndrome, Sticklers and Osteogenesis Imperfecta.
Fibromyalgia Information Foundation is the brainchild and hard work of Kim Dupree Jones PhD, Robert Bennett MD, Sharon Clark PhD, and Ginevra Liptan, MD, all well-respected, frequently published specialists and researchers associated at one time or currently with OHSU’s Frida Fibro Center. In their words:
“The major aim of FIF is to increase the public’s understanding of fibromyalgia, by providing information that is based on scientifically validated research studies. We also recruit and train the next generation of fibromyalgia researchers. To these ends, we provide educational and self-help tools via relevant postings, internet links, books, articles, video media, conferences, and our speakers bureau.”
Living with Fibro and Having Surgery?
If you have to have surgery, read and hold onto this printable PDF file packed with super important do-not-miss information that you and your doctors should both be aware of. If you have fibromyalgia, keep this pdf available in your medical binder, and bring an extra copy or ten to your appointment with your surgeon at least two weeks before the operation: http://www.myalgia.com/Surgery%20in%20Fibromyalgia%20Patients.pdf
Chronic Fatigue Syndrome / Myalgic Encephalomyelitis:
Chronic Fatigue and Fibromyalgia Self Help offers so much to patients at all ends of the knowledge spectrum, in the way of online courses in learning to manage chronic illness, ways to find support groups and doctors, the newest research, and patient stories. There is so much really useful information here!
Global Genes: Allies in Rare Disease. This website includes kits on coping with various topics relating to rare disease.
More Coming Soon!
Send me your suggestions for what I should research next, or if you have a favorite support group or condition-specific website, leave the link and I would be so happy to add it to the list!