Ehlers-Danlos Syndrome Support Group

Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.

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Finding a Doctor or specialist to treat EDS

deleted_user
deleted_user
Hello all, I'm Jennifer from Southern California. I was diagnosed a few months ago by my primary doctor with EDS hyper- mobility. I have been suffering with chronic neck and back pain for over two years now. My problem is now that even with my diagnoses I am still left with the chronic pain. My doctor does not believe in narcotic pain medication, and has me on naproxen, flexeril (muscle relaxer), and gabopentin along with physical therapy. I haven't gotten no relief from my medication or physical therapy. I've seen my doctor three times since my diagnosis, and he's old and I believe becoming senile, because each time I see him he forgets why I'm in physical therapy, and asks me where my pain is and then makes me do the same tests over and over again and re diagnoses me with EDS hyper-mobility. The last time I went in he cracked my back and held one of his hands on my spine while cracking it and said my vertebrae was popping out as well as my spine is now curved. I've asked him to send me to a pain management specialist and even a rhuematoligist and he says they wouldn't be able to do anything for me and that I would just have to keep doing physical therapy until my pain is cured. My doctor has also not tested me for any of the other types of EDS and I'm concerned I might have POTS as well based on the symptoms. I keep hounding my doctor to send me to someone else, and he's agreed that if I find a specialist then he'd refer me, but that he won't do any research on my behalf. I've called more than a few doctors because I'm considering getting a new primary doctor that can better help me, but when I call them I'm told I have to switch doctors before they'll even answer if they've even heard of EDS. I'm wondering what type of doctors do EDS patients get their treatment from, and how do you find them?
GenuineMystery
GenuineMystery
Southern California is not a good location for someone with EDS. The doctors there are not EDS experts. And your particular not-so-urban location probably further limits options.

If I were you, I'd keep trying physical therapy, maybe from a different place. Some exercises work better than others (for some, that's aquatic therapy), and it can take a long time to build up muscle strength that holds together an injury-prone body. Also, I'm 99% sure your doctor is right about narcotics, based on your age alone. There are other categories of medication (including supplements) you can take that might help a little, but if you focus on getting stronger, avoiding unnecessary activities that cause pain, and changing chairs/mattresses/pillows, you'll benefit much more than from narcotic pain meds. Lastly, you probably should insist on seeing a rheumatologist about POTS.
CarlyMichelle
CarlyMichelle
If you can travel, dr. Amer suleman is in McKinney, texas. He can diagnose pots and eds.
deleted_user
deleted_user
As far as pain medication goes, I go to an orthopedic and then have no issue prescribing me oxycodone and other things. However, the downside is because you are in chronic pain, you have to take pain medication very frequently. Eventually the pain medication just stops helping because you are immune to its' affects. I know this really doesn't help but pain medication probably isn't the best route. I now have to take very high doses of narcotics to feel any relief and so I usually just try to deal with the pain instead.
etm567
etm567
I disagree with the user who said no opioids. It depends on the type of pain you have. IF it is just inflammation, that's one thing, but if you have chronic back pain and bone pain (I have perpetual aches in my skeleton that get much worse when I stand up or walk or do anything), opioids may be the only thing that will help. And I understand about getting used to them. I have my own way of dealing with that, which is to take the least possible dose when I'm horizontal, and thus save up some to use when I am active. And I'm going to a new pain doctor and he is going to put me on some long-acting, 12 hour med that you put a patch in your cheek and it goes into your system that way (I also have very poor absorption -- celiac disease, maybe Crohn's, SIBO) and then short acting ones for when I need them. That may work much better. But I've been using opioids at the same dosage for many years, and my little hoarding routine has worked for me. My pain is so much less when I'm horizontal and gets so much worse as soon as I stand up and move around. My first trip to Home Depot (before diagnosis; I'm 66 now) I sat on that cold concrete floor I hurt so much. I've sat on the floors in too many places to name due to pain. Nothing else helps AT ALL.
etm567
etm567
By the way, I also am looking for an EDS competent doctor. I'm in northern NJ. I was diagnosed just a few years ago, and my son hash it (we have type 3, thank goodness) and I've just realized my husband probably has it as well. My son can dislocate some joints at will. So I really need to find a good doctor for him and good PT.