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!

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.

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!

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

Just Google his name.... many more sites are interviewing him etc, since that lecture.

I guess I mean like a scientific article...I'll try google-ing him.

I've also read several literature review articles by Dr. Clauw. He is very much a well-respected, insightful, and forward-thinking researcher and practitioner in the fibromyalgia field. The previous excellent post describing his work is a top-notch summary, and a service to all fibromyalgia patients. I hope more information like this can be shared. The only new possible fibromyalgia therapy not mentioned in the above review--and this is still murky--might be low-dose naltrexone (LDN) which is being studied at Stanford. Only one paper has been published so far, and it is a bit more like a collection of case studies. A follow-up paper is noted to be due out soon from Dr. Jarred Younger there. LDN therapy is thought so far to help the symptoms for only a sub-group of fibromyalgia patients, and then, only moderately.

I have looked at several articles that seem very positive about the LDN therepy. The dose is so low and side affects are so little that I think anyone who is suffering from chronic pain and fatigue should give it a try. I'm going to try it as soon as I can get a perscription for Naltrexone for my "drinking problem" and then split the 50mg tab into 4.5mg doses. Then take one of them once a night. It's important not to take more than 4.5mg. If it helps great. If not well no harm done. I have so much pain and fatigue I almost can't stand it. Some thing has to be done. After 12 years I'm getting so tired of feeling like dog doodoo. I hope this helps.

Thanks for the information; I am taking it to my pain Dr. appointment next month. I do have a question about the pain. I take Lyrica for ne tingling and such but what I have are spots on the top of bones. Many headaches are relieved after rubbing around the bone on my eyesockets - I also have the bones in my shouldars, when massaged hurt like heck and I have a spot on my foot right on top of the bones. Do bones have nerves along them? Ialso have osteoarthritis from sports damage in my thoughless conceptual youth. I find the opiates take away the pain but only for a short time, eg. an hour or two and then I have to wait for the next dose of medication for another bit of time. I do find hot water showers and bottles work on the persistent and morning pain. Any suggestions or information is very welcome...Ithurts but I am positive.

Perhaps this thread will help:
http://neurotalk.psychcentral.com/thread123731.html

Massage stimulates circulation, and may be having tactile effects on adenosine, like the acupuncture does.

I've had much less muscle pain (I have arthritis too) since I started the ribose. Ribose does appear in some studies for fibro.