By Greg on Tuesday, September 18, 2001 - 04:09 pm:

hello all,

Please keep and open mind as you read this post. I am now 21 years old and my EDS symtpoms are getting much worse. I lift weights regularly, but I think I also suffer from benign congenital hypertonia. I simply cannot put on any muscle. Most doctors agree that this inability to gain muscle greatly exacerbates the symtpoms of EDS. So for the past three months I have been studying up on anabolic steroids. I know there is a lot of bad press out there because of inappropriate use and abuse, but there are some conditions that steroids are useful for. Mostly AIDS and cancers, but also "wasting conditions." I don't know about you guys, but I certainly feel like I am wasting away. I am wondering if anyone has ever used anabolic steroids under the supervision of a doctor, and how there results were. One steroid in particular, "Deca Durabolin", is tauted by bodybuilders to ease joint pain. Why? I don't know yet, I am looking for evidence as to why this may be. Please, do not take this as an illegal steroid endrosement, because a lot of steroids on the street are pure grabage, but I would like to explore whether use of anabolics under the strict supervision of a doctor could improve our lives at all. I am desperate now, and prolotherapy is working very slowly and painfully for me (although it is definitely working) So I ask that we all do some personal research and ask our doctors about possibilities. Again, we have to be our own advocates in our struggle with EDS. best of luck to you all

Greg

By Sheena on Wednesday, September 19, 2001 - 01:53 pm:

Greg, You have read about this and I have not. But I suggest that if you do find a doctor willing to try this treatment, you look for a second opinion - and don't try it unless at least 2 independent doctors think it sensible. I hope you get some improvement soon (by conventional methods if possible!)

By Greg on Wednesday, September 19, 2001 - 06:20 pm:

Sheena,

I appreciate your concern, believe me, I am an extremely knowledgable patient. The trouble for me is that I can't find one doctor who would monitor me on steroids, so finding two is near impossible. My endocrine system is already shot, and needs replacement, so I would not be losing much at all. I have tried all conventional treatments and alternatives. I am looking for something new. Best wishes

Greg

By Kim on Saturday, March 16, 2002 - 12:33 pm:

Gregg,
Steriods is a heavy step. If you can find a doctor to do it, I would be concerned about his credentials to be truthful. From what I have read and seen, my ex was a bodybuilder, they can be very dangerous.I recieved gold shots in my joints as part treatment ONCE I would be interested in knowing what type eds. you have. Injections that powerful may really screw with your insides besides all the horror stuff you hear. Just a thought. Best, Kim

By Maxine on Saturday, March 16, 2002 - 02:11 pm:

I am on steroids at the moment(not the ones bodybuilders use)for Polymyalgia Rheumatica in quite a high dose. They have reduced the inflamation in my muscles and have eased my muscle spasms but have done nothing at all to ease the joint pains I suffer from with HMS. I would not even consider trying anabolic steroids as the ones on prescription have caused me to have inflamation of the gullet which is really nasty, the pain is unbeleivable you think you are having a heart attack and now I can only eat bland foods such as mashed potatoes and milky things even with treatment. Be very careful.
Maxine