What i am afraid of is that once a drug gets approved for fibro. Doctors are going to a all or nothing approach. And want to put everyone on that drug. and if it does not work they wont try other drugs. They will dump you and claim that you are a hypochondriac or just looking for narcotics.

Since i believe that fibro is a group of disorders and not a single disease that can be treated with a single drug many of us will be left out to suffer. With out help.

I to have been looking at drug trials and have found that most are loaded to get the results that the drug companies need to make there drugs look very affective when they are not or only affective for a subset of fibro,

Many of the drug companies only look for mild cases of fibro that are more likely to be helped by there drugs and many of those drugs some of us have already tried an found to be worthless for a large numbers of us.

Some drugs the VA has researched like antidepressants and found that they only work in about 30 % others like cymbalta have been found not to work for most men. with fibro and the trials have no or few men. yet the drug companies don't say anything about this in the results of these trials.

for new eyes to see.

mrsd: WOW! This is very Interesting!!! Thank you so much for this thread. Is there hope out there for us????

Interesting stuff. But I too think there is more than one kind of fibro. Mine was actually CAUSED by a reaction to an anti-depressant (chronic insomnia and uncontrollable muscle twitching that continues to this day).

Nevertheless, every time I see a new doc, they try to talk me into anti-depressants! And the last three rheumys I saw were convinced I'd be CURED if I just did 30 minutes of cardio-vascular exercise three times a week! I agree that exercise is important, but the most I can do is aquacise for people with arthritis, and I am told that's not good enough.

I am thinking that most of the research is on people with mild fibromyalgia from common causes such as motor vehicle accidents. That's a double edged sword: good because you get more predictable results in studies, but not so good for people who have multiple ailments and don't react predictably to a treatment. But if people with mild fibro could actually be cured or at least helped considerably, I'm all for that.

Dr. Clauw is good at what he does, and I'm glad real progress is being made in research. Where I live, the only clinical trial for fibromyalgia uses cognitive behavioral therapy and nothing else! I'm just tired of being told by docs that all fibro patients are lazy, won't ever do anything that hurts, and just need to get off their deconditioned butts and go jogging.

Any chance we can clone Dr. Clauw??

fanfaire

WOW!!! I really appreciate your time in this thread. I learned quite a bit from your info.

I was diagnosed with Fibro in March of this year and I have already been through several drug combos. Nothing has worked thus far. However, I do see a Chiropractor once a week combined with massage therapy, and this actually seems to be the oly reason that I can get out of bed. I am not saying the Chiro/mass therapy is for everyone, but I am prof that it does work.

Again, I just wanted to say thanks.

Chad

I was a healthy 44 year old man until a car accident left me with chronic pain, herniated discs, radiculopathy etc. Surgery helped the leg pain, but since then I developed a whole host of problems which I have reluctantly had to accept as fibromyalgia. Reluctant, because I am a doc who treats psych patients and when they say they have fibro and are wanting 5 Roxycontins a day I am immediately forced to question their motives. However, this damn condition is real and it causes me daily pain, occ numbness and weakness, insomnia, IBS, chemical sensitivities I never had, and overall decreased quality of life. It sucks.
I have not found a good doctor in my region so I end up being my own doc and telling my doc what to try....Lyrica helps me, Tramadol helps somewhat w pain, IBS, and anxiety, and various sleeping pills help at times. The fatigue is bizarre, sometimes really bad and I have tried Provigil, Nuvigil, Adderall and Vyvanse, all of which can help but all have side effects. Massage helps alot, but only for 24 hrs...cant get one every day! I have 16 out of the 18 trigger/tender points, so I'm not so sure thats not useful...those trigger points are on meridian lines and I am trying accupuncture now...we'll see. Doc Byrd

Welcome to NeuroTalk! Minah Byrd

You might be interested in d-ribose.

Here is a link to a thread about it, and acupuncture.

http://neurotalk.psychcentral.com/sh...ghlight=ribose

Ribose is part of the molecule adenosine. This is then part of ATP, ADP and AMP in the mitochondria. Adenosine is also the signaler of sleep. I've found that ribose is very helpful for chronic pain, and sleep problems.

Also if your B12 is low, you are not making melatonin. MethylB12 is the cofactor for converting serotonin to melatonin.
So do a blood test for that too. You should be at 400 or better, and not in the low ranges which are mistakenly given as "normal"..

http://neurotalk.psychcentral.com/thread85103.html
This thread has current medical information about this subject.

Thirdly, you will need to test your Vit D levels.
You can see significant improvement in a chronic condition like Fibro with raising your levels to the new suggested ones:
http://neurotalk.psychcentral.com/thread92116.html

And high dose tramadol can cause urinary retention and constipation in some patients.

I found it interesting that he didn’t recommend opioids but also said that tramadol had a moderate success. Tramadol is an opioid.

Mrs. D,
Im a new member but I have suffered with FM since 1988. I am glad to see your post on on Dr. Clauw. Since the beginning his work has been one of few who gave credence to the syndrome as being more than just in your head. Thank you for taking the time to share with us the research going on. I look forward to learning more.

Hello AZ and welcome to NeuroTalk. I too, suffer from FM along w/a couple of other DX's and I can describe it in one word~~ miserable. I'm glad you found us and I hope you check out our New Member Intro forum and post there, as more members will see it then.

Let us know if we can help in any way.