AUGOLDMINER

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.

mrsD

for new eyes to see.

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DM

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

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DM

fanfaire

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

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Sjogren's, neuropathy, gastroparesis, diabetes, celiac, Raynaud's, hypothyroidism, fibromyalgia, chronic myofascial pain, periodic limb movement disorder

Azshadowlover

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.

DM

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.

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DM

DejaVu

A Warm Hello to All!

I have enjoyed reading back through this thread! Lots of interesting info!

mrsD: I cannot even begin to express the depth of my gratitude for your never-ending commitment to making sure people have access to important and accurate information, in so many different specialty areas! You do an amazing job...you know your science and can deliver it/teach it, with a heart of gold, too! You have such an intensely positive impact upon the lives of so very many! I have my depest respect, admiration and gratitude.

Did a conference occur in late May of 2009?

Fiberowendy: I'm so glad you have been in great hands, under the care of Dr. Goldenberg! Nice of you to mention Don L. Goldenberg, M.D. He's a fantastic person, an amazing doctor and a long-term prominent researcher! He was studying fibromayalgia in the 1980's and also working to help individuals suffering badly with fibromyalgia back then! He'd also collaberated on a study, along with Anthony L. Komaroff, M.D. (Brigham and Womens Hosptial in Boston, MA.). In that study, they were taking an early look at the differences and the commonalities between fibromayalgia and Chronic Fatigue Syndrome at that time. (Each of these gentlemen are outstanding doctors, dedicated researchers and avid life-long advocates for the people suffering from the conditions they each continue to research!)

My very best to all!

mrsD

yes, the conference however did not have Dr. Clauw in it.
The scientist who gave the "fibro" portion had a thick accent and no one could understand him.

But since this subject came up today at PN, I'll put up this NYTimes article about the subject in case some missed it.

http://www.nytimes.com/2008/01/14/health/14pain.html

Also here is Dr. Zubieta
http://www.med.umich.edu/opm/newspag.../painbrain.htm

Most of the conference was
1) political things involving chronic pain, because of the upcoming legislation
2) estrogen induced pain, and migraine
3) diagnosing rare chronic head pain
4) PT issues with chronic pain

Dr. Clauw BTW is in the NYTimes article. He told us in 2007 that the drug companies are preparing drugs to make alot of money on Fibro...considering it a last frontier of sorts. Since that lecture Lyrica was approved for Fibro and so was Savella recently (which is not going over well so far-lots of complaints). Pfizer has already stated that it is not going to continue cardiovascular research in favor of more drugs like Lyrica.

I have seen many many patients who supposedly have a Fibro diagnosis, being treated with the wrong drugs.
Also the trigger point injections and diagnositic criteria are no longer being considered as valid by the researchers of same.

This remains a highly controversial topic. It is no fun having pain all day. But it is also unfair to be misdiagnosed and a real pathological issue might be found with proper testing.

I myself had a tentative fibro diagnosis years ago ...which was empty. So I know it can happen.

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DejaVu

Hi mrsd,

Wow! You have responded very quickly!
This is interesting information!

It's exciting to see research (hopefully) getting closer to the truth on cause(s) and appropriate treatment(s). It has been a very long haul for those suffering and also for the researchers. I can recall an interview with both Dr. Goldenberg and Dr. Komaroff in mid-80's. They were extremely hopeful of having very clear answers within 10 years. Unfortunately, it has been much longer than ten years. (However, I am grateful to all of the researchers remaining dedicated to sorting this all out!)

Yes, many have been misdiagnosed and have been treated poorly. I do not deny that. I have seen so very much of it. It's extremely important for all people get second opinions (and more if possible) to be sure their own diagnosis is as closest to the correct diagnosis as possible.

Again, I am grateful to you for this information, for your input, and for all you lend to the health and welfare of so many individuals.
I know so very many people are grateful to you!

Macophile

Does anyone know if he or anyone else has written any official articles about this?

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~ He gave her twelve roses...eleven real and one fake....and he told her:
"I will love you until the last one withers and dies."~