You should be prepared to do a lot of work on your own to get a diagnosis, treatment, and disability benefits for invisible pain syndromes like EDS.
* A detailed daily Symptom Diary is essential *
If you haven’t already, you’ll have to start keeping a symptom diary in great detail to give a complete picture of what’s going on. This means you have to keep a log all day every day and write down when you get up, how well you slept, how you feel physically and emotionally, what you eat, what activities you do, when you go to sleep, and exactly how much, what kind, and where your pain is at each point. Only in this way can you and your doctor determine what’s causing you pain and other symptoms.
Getting an EDS diagnosis
When I suspected that my constant pains and lifelong strange physical symptoms were EDS, I researched it and found two PubMed articles that document all the symptoms. I used them to make an exhaustive list of every one of my symptoms, experiences, and family history that matched the description. I ended up with a 2.5 pages MS Word doc including a couple of pictures of my scars and loose skin.
With that document of evidence in hand, my GP agreed that EDS seemed to explain all the symptoms I’d been complaining about. So I asked for a referral to a geneticist and sent them my document before my appointment. I had to wait 6 months, but the appointment was short and it seemed they diagnosed my EDS mainly from what I’d written.
Here are the articles with a complete listing of EDS Hypermobility type symptoms:
Gene Review: Ehlers-Danlos Syndrome, Hypermobility Type
Ehlers-Danlos Syndrome, Hypermobility Type:
An Underdiagnosed Hereditary Connective Tissue Disorder with
Mucocutaneous, Articular, and Systemic Manifestations
Ehlers–Danlos Syndrome, Hypermobility Type:
A Much Neglected Multisystemic Disorder
Here is a document created by a fellow Inspire.com member listing all the diagnostic criteria of this multi-faceted disorder:
Getting treatment for invisible pain
I have kept a Symptom and Pain Diary for over 10 years and it has been my most powerful tool to convince doctors how severe and disabling my pain is. It’s a ton of work, but the pain keeps me from doing too much else anyway. I was hoping it would show me patterns of what triggered my pain, but I never found anything – it’s just the “normal” consequence from my EDS and Fibromyalgia.
That document will also help you remember things so your story will always be 100% consistent. I’ve found that doctors believe written evidence more than merely spoken, and with good reason. Your pain diary in writing can become part of your medical record and provide the doctor hard evidence that he can use to defend an opiate prescription if he has to. Remember, doctors have to justify their prescriptions to their medical boards and the DEA if they get audited, so it helps a lot if you give them documentation of your pain.
If you haven’t already done so, you’ll need to become an expert on your own condition so you can use the right terminology and understand the implications of what you’re telling the doctor. This means learning more about EDS than your doctor does, because he doesn’t have the time to dig into the details unless EDS is his specialty. You have to find a way to talk about your pain that makes sense to a medical expert, and using their own language helps a lot.
If you’ve been rejected by multiple doctors there may already be some note in your medical record that brands you as non-compliant or being a drug-seeker, so you might have to get a copy of it yourself and audit it. If there’s anything derogatory written in there for any new doctor to see, you can refute it in writing and add that in as well.
It’s not fair, but you’ll have to do a lot of your own work to get this situation turned around. If you can present your doctor with info detailing your physical state for every moment of every day for a few weeks (about 2-3 typed pages per week), there will be much less denial of the severity of your pain. Pages and pages of specifically documented pain are given much more credibility than what you say, and a written report gives you more control over what goes into your medical record too.
It’s a good idea to document your pain in functional terms because that ties it to disability. For instance, if it’s too painful to hold your arms up long enough to brush your teeth, or if you can’t walk up a flight of stairs due to burning muscles, you should write about how pain limits your functionality in everyday life.
Also, if you can afford it, you should try to see a therapist who specializes in pain and addiction, who is willing to state that you don’t have an addiction, but are taking opiates just for your pain. Having my addiction specialist therapist determine I’m not an addict and communicate that to my doctor made a world of difference.
Getting social security disability benefits (SSDI)
I was also able to file for and get SSDI myself, by continuing my practice of documenting everything. I not only sent years worth of files from my multiple doctors, but also a month’s worth of my detailed health diary, which includes notes of my symptoms, pains, activities (or lack thereof) and meds from the time I wake up until bed.
A month’s worth came to 2.5 single-spaced pages! I also had my therapist and good doctor send letters of support and had a good Friend fill out a copy of the functional report. My plan was to overwhelm them with pages and pages of documented misery.
To add more evidence to my case, I asked for and received supporting letters from both my PCP and my therapist. They verified the authenticity of my pain and all the efforts I’d made to cope with it and keep working.
In addition, a dear friend who has spent lots of time with me volunteered to fill out an extra copy of that critical “Functional Report” (part of the package you’re given to fill out) with all its endless pages of picky and detailed questions. It must have taken her hours and, because they are well-aware of the difficulty in filling out this form, this must have made a big impression for my case.
I was told that I could submit any pertinent information or data to support my claim, and I took them at their word. I sent them an essay describing what my mornings were like, waking up in pain, the struggle to get the day started, and all the pain that entailed. I even sent a poem I’d written during a time of great distress.
Lastly, I carefully composed a personal appeal. I wrote an emotional letter explaining how terrible I felt to be asking for SSDI, how heartbroken I was to give up my exciting and well-paid career in technology, and how I hoped my fellow citizens would show me mercy in my time of hardship.
This is the path that led to my getting my EDS diagnosis, good pain management, and SSDI benefits.
I wish you the best of luck – we all need it!