March 23, 2013 at 4:34 pm #419wastedtalentParticipant
At 7 years old, I broke my collar bone, right shoulder started dislocating. At 15 I was doing one arm pushups and left shoulder popped out. Hips started dislocating at 19.
I was able to stand up as a casino dealer, play Hockey, and have a wonderful life.
At 34 for mother asked me to stop smoking Marijuana. The first few days were indescribable!!! I figured it was withdrawals from the Marijuana, but after a month, I figured there was something really wrong! So I started seeing doctors, that was 10 years ago and I AM STILL LABELLED AS A DRUG ADDICT!!!!!!!!
I have seen over 30 doctors in 4 states and still no diagnosis!!! My shoulders burn, my right knee dislocates, my hands hurt and I feel like I’m wearing gloves, my feet have been described as foot drop, my heart clicks when I do to much, and the pain… All I want to do is lay still and not move, the only time I have any relief is when I purchase Marijuana illegally!
Is there anything else that would help??????
I have heard Bayer aspirin has come out with clinical trials for “Sativex” would this help???April 19, 2013 at 7:08 am #3631TabathaParticipant
I’m afraid I can’t answer your question, I just wanted to say Hi I am sorry that you are having all these problems, I can feel for you, for very different reasons I have been having problems with my health since teens, been to many different doctors and given different labels, I feel strongly that my hypermobile joint could be underlying every thing, so I am going to see a doctor (I’m in England) privately who is an expert in hypermobilety and EDS to see if it all joins up. My heart went out to you, I hope and pray that you will be able to find some answers, it sounds like there is most deferenatly something going on that connects all your problems. Keep going !June 26, 2013 at 12:14 pm #3826Dr. DianaKeymaster
Hi Wastedtalent, I think we all have climbed a similar mountain. I’m not sure where you live? Perhaps we could help to steer you toward someone if we knew approximately where you were located? Did you check yourself with the Beighton scale? (you can google to test, or I have a couple of videos out about the different types of EDS that explain this scale). Although it was a battle for us, some people sail right through to the right people!
The “right people” can be anyone from a shoe-salesman, eye doctor (ahem) to a orthopedist. They just have to have some familiarity… And an open-mind! Let us know? 😉
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