By Ann on Sunday, June 04, 2000 - 12:48 pm:

Hi everyone!
After 18 years of searching for a doctor who would actually listen to me, I have finally been diagnosed by the medical profession with EDS (something I have
known for years, although could never get them to take me seriously) Am sure you all have heard this once or twice........."it's all in your head" Well, now that I have
th Dx, my rheumatologist has me taking Celebrex, Zanaflex, Paxil, Ultram and Neurontin. I have been taking them regularly since November and have yet to notice
any "real" advantage other than they make the pain a bit more manageable, but it NEVER goes away. Just wondering if anyone else has had any luck with meds?
I know that I am fortunate now to have finally found a Dr. who will listen to me, although after many many years, I realize their is really nothing they can do except
help you manage through it all. Glad to have this place to come to, hope everyone is coping well.
Thanks for listening

By Gwen on Sunday, June 04, 2000 - 12:48 pm:

Dear God woman you must rattle when you walk! If they aren't doing much good stop taking all of them. I was Rx EDigesic for my joint pains but found that after a
while it lost its effectiveness. I think I was maybe developing a tolerance to it. I now only use it when the pain is so severe that I want to bite chunks out of the wall.
The rest of the time I use wheat sacks, TENS machine, relaxation techniques and stretching. the only time I ever found my pains had totally disappeared was when I
was given post-operative pethidine following abdo surgery. Wonderful effect but definitely not reccommended for everyday usage! Otherwise , no I haven't found
any medication that totally alleviates the pain.

By TJ Harp on Sunday, June 04, 2000 - 12:49 pm:

I know what you mean -- I feel like a walking pharmacy, too. At first I had Daypro. It didn't really work, and made me sick. Then I had Celebrex, but my doc hadn't
checked my files to see that I'm allergic to sulfa, so not only didn't it work, I kept having reactions to it. Now I have Vioxx -- of all I've tried, it actually put a dent in
the pain. I also have amitryptilene (Elavil) as a sleep aid, and Ultram, which also seems to work pretty well with very little side effects. It's really a crap-shoot. It
seems almost nobody gets identical results from any of this stuff. Hope this helps.

By Denise on Sunday, June 04, 2000 - 12:49 pm:

They just put my 16 year old daughter on Vioxx - 25mg in the morning. It is the only thing that has helped her with pain so far. The Celebrex never worked.

By Sue C on Sunday, June 04, 2000 - 12:50 pm:

One "side effect" of EDS is not responding normally to anesthesia. (Personally, novacaine shots do nothing, yet the dentist goes on....)

Do you think this is why many HMS sufferers aren't getting help from a number of pain medications?

By Lucy on Sunday, June 04, 2000 - 12:52 pm:

Well, let's see: Tramadol, relafen, piroxycan, vioxx (works a bit), quinine, skelaxin, etc. etc. etc. I finally stepped outside of the medical profession and tried
marajuana - the only thing that has any effect - the only problem with that is that it dulls my thoughts! But the other stuff was horrible, and my medicine cabinet
looks like a pharmacy. I don't know why and it makes me very frustrated. All I know is that if you find something that helps, use it. If it doesn't, then don't. It is, I'm
afraid, a crap shoot! All the best - Lucy

By kim on Saturday, March 16, 2002 - 10:16 am:

Hello everyone,
Im with Lucy on using whatever works for you. Everyones chemistry is different and I use a combo of supplements,mild exercise,warm hot packs,and drugs.On days I know I need a clear head I dont take the drugs or fire up. My disease is very symptomatic, I have very good days and do all I can when I can, cause when Im down Im down.It is indeed frustrating because Drs. cant and dont understand. Remember, you are in charge of what happens with your medical treatment.If your Dr. is not up on whats going on with you get another. There are only a million of them..It took me eight years for a proper diagnosis and two more to find a specialist I liked. Best Kim