Fibromyalgia Support Group

You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

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seattlesue 12/05/2007

Ok so I have a decision to make. As some of you know I signed up for a clinical trial for Fibromyalgia. I have had to go off the one thing I was taking and can only take Tylenol. I was taking Robaxin and It wasn't helping much, but even without it's minor help I am in trouble. I don't sleep, pain levels are at 7 to 8 and I can't leave my apartment because I have to have my husband help me up the stairs. Things have gotten so much worse in the last two to three weeks. I can't take much more. I called the docs office where the trial is being held and I will not get on the study meds for at least another 2 and a half weeks. And then I only have a 75% chance of getting the study meds.

So I have to decide to stick with the program and wait it out, or quit the trial and get some help. Pain and fog is so bad I can't decide. I want to help with the trial so we can get something that will give us greater relief, but do I or can I stay the way I feel for another 2 weeks. I just don't know. Taking any opinions that I can. HELP!!

Susan

deleted_user 12/05/2007

You have to do what you think is best for you dear. You may be having some withdrawal in there too. Maybe you should ask Dr. about that. I am so sorry you are in so much pain. You are in my prayers marilyn

deleted_user 12/05/2007

I think you should forget the study and get back on your meds. Let someone else do it, someone who doesn't have as much pain as you do. If you are able to last long enough to start the study, you really won't want to drop out then, and I don't think you could make it through if you don't get the study meds, or if they don't work for you. In addition, you have no idea what the side effects might be. The worst part is that this could cause your condition to deteriorate, mine has every time I've gone through a period of stress or illness, and it never goes back to the level it was before. Of course, you must do what you think best, but I don't think it's worth the risk to you. Surely they can do the study with people in earlier stages that don't have so much to risk.

deleted_user 12/05/2007

That is a really tough one. Have you exhausted all other treatments that are not medicated for relief, such as meditation, exercise, and such. Two weeks is a long time to wait, I know at this time of the year for me I have to be able to function. Do what is right for you.

deleted_user 12/05/2007

I think its in human to ask you or anyone else to stop your medication for this trial. Doing a trial on fibro patience ?? Don't they realize you need something stronger then Tylenol ??

deleted_user 12/05/2007

Dear Sue,

I hope you will drop the clinical trial. Let others do it that don't get the level of pain that you do.

I find that the longer my pain is allowed to take over, the longer the flare.

Also, I think it was stupid of them to begin this trial when the weather there is bound to add to your problem.

In the end, you must do what you think is right for you.

From watching the news today it seems the weather there is just itching to torture the fibros!

Love and gentle hugs to you sweetie, sue

deleted_user 12/05/2007

Sue, I must agree with others here. You should get out of trials...if your pain level is that bad now and you don't know for sure if you are going to get the other trial meds, you have to get yourself back to what you were doing or else the pain will be totally out of control and will take a long time to get it back to some level of coping affect...Just my opinion but you, as everyone else have different levels of fibro...yours sounds pretty high..get back to what you were doing...hope this helps...be good to yourself and your body hun
HUGS,
Tea

deleted_user 12/05/2007

Perhaps you would like to check into the one at NW Clinical trials.

heybev13 12/05/2007

You have to take care of you. Even if you have to drop out of the trial it will still tell the researchers something - that fibro causes so much pain it can't be tolerated for that long! Think about what's in it for you, and if you don't think it's worth it - quit and take care of yourself. Warm hugs.

deleted_user 12/05/2007

I say go off the thing. You can't live like this! Good luck!!

deleted_user 12/05/2007

Sue,
It sounds like your pain is out of control.I think you should talk to your Dr about it honey..Many gentle hugs to you

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