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.
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?
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This isn't really bipolar related but there is never anyone on the parenting groups, this is the most active group I've been in.My 6yr old son has really bad seasonal allergies and they're in full force right now. He gets a terrible cough; he coughs all day and all night, making it hard for him to sleep, and his nose runs.I've tried every allergy medicine, OTC and RX, and none of them affect his...
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Is anyone here allergic to Sulfa that is currently taking Diamox? I have been diagnosed with IH now for almost 2 years. I am allergic to Sulfa drugs meaning that my throat will swell up so my Neurologist put me on Topamax. I was suffering from major loud whoosing noises and the topamax helped that but everyday I still hear those mainly between 6 - 12 pm. I am at my wits end and have not went...
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.