I don't normally post here...but I want to share some information that came my way on Friday. I attended a long complex medical conference on Chronic Pain, and one portion dealt with Fibromyalgia.

The professor Daniel J. Clauw MD was just excellent.
http://www.med.umich.edu/painresearch/staff/clauw.htm

He is currently teaching the new data about Fibro to residents and staff at the University of Michigan. There is new data about what Fibro really is, and what methods treat it most effectively.

Some searches on Google using his name will bring up papers like this:
http://www.immunesupport.com/library...le.cfm/ID/3854
and
http://fmsglobalnews.wordpress.com/2...-rheumatology/

I will try to summarize what I found important, and if you search further, you will find more on this subject.

1) "Tender" point analysis is being dropped in diagnosing Fibro. And new research into genetics and neurotransmitter actions in the brain are showing that there is an 8 fold increase in fibro among first degree relatives. And that pain perception of ANY stimulus (not just trigger points) is exaggerated in fibro sufferers.

2) The genes being looked at are 5HT2a receptor polymorphism T/T phenotype, serotonin transporter, dopamine D4 receptor exon II repeat polymorphism, and COMT (catecholamine o-methyl transferase)..which is involved in pain transmission.
In other words, the pain circuits in the brain are faulty and over-reactive.

3) Not everyone with the genes develop FM... there are triggers. A portion of the brain, that evaluates subjective sensory data, can be overactive and there can be autonomic and neuroendocrine dysfunctions.
Some of the triggers are:
a) peripheral pain syndromes
b) Infections esp with parvovirus, Epstein-Barr Virus, Lyme disease, Q fever (in Australia/New Zealand), uncommon upper respiratory infections.
c) physical trauma (automobile accidents)
d) hormone errors, such as hypothyroidism
e) some drugs (sorry he didn't list those)
f) vaccines
g) certain catastrophic events like WAR, but natural disasters and 9/11 attack did not show increase during studies. So the catastrophic event data is pretty strange IMO.

I won't go into the amazing details of neuronal functioning, but Dr. Clauw did give this list:
Facilitators in sensory processing + factors are:
Substance P
Glutamate and EAA (I don't recall what EAA is)
Serotonin 5HT2a 3a receptors
Neurotensin (a cytokine)
Nerve Growth factor
CCK (cholecystakinin)

Inhibiting factors - are:
Decending anti sensory pathways which include
Norepinephrine/Serotonin 5HT1a, b
Opioids

GABA
Cannabanoids
Adenosine

Now this sounds very complex, but using drugs successfully in Fibro patients depends on understanding where these drugs can work.

I am going to skip now to treatments, and comment that some of you will NOT like the following. I myself, do not see reflections of these treatments in the public yet.

Strong evidence in studies for the following drugs:
a) tricyclic antidepressants-- Elavil(amitriptyline) and Flexeril--Dr. Clauw's most successful use is with Flexeril given at bedtime. He starts at 5mg/night and ramps up to perhaps 20mg if needed.

b) anticonvulsants-- gabapentin (Neurontin) and pregabalin (Lyrica). The Lyrica may need to be upwards to 600mg/day

c) Dual antidepressants with both norepi/serotonin actions:
venaflaxine (Effexor), Milnacipran (a new drug very promising with few side effects being evaluated now by FDA soon to be passed--very successful in other countries), and duloxetine (Cymbalta).

Modest Evidence:
a) tramadol (Ultram) for pain (this may interact with Flexeril however...so care needs to be taken if both drugs are used)
b) SSRI andtidepressants like Prozac (he says this one is best), Paxil, Celexa, Zoloft

Weak Evidence:
Human Growth hormone, 5HTP (an OTC supplement), tropisetron (http://www.tropisetron.com/ I don't think this is available yet in USA), and
SAMe (s-adenosyl methionine) an OTC supplement

NO EVIDENCE of effectiveness:
Opioids (narcotics), corticosteroids (prednisone), NSAIDs like ibuprofen etc,
Benzodiazepines (Klonopin), and nonbenzo sleeping meds (Ambien/Lunesta),
and guanifenesin (Robitussin).

Now the reason given about the Opiods...and I expect this factor to be hotly responded to here...is that studies were done on the internal receptors in the brain of Fibro patients for endorphin/enkephalin sites. It was found that these are overactive and all filled by endogenous molecules, and that there is no room for opiates to engage the receptors. Dr. Clauw said that Fibro is an upregulated condition where the body is already producing alot of internal opiates for this system.

Non-Drug therapies:

Strong evidence for improvement:
Education/understanding the condition and how it manifests
Aerobic exercise (start a few months after drugs are working)
Cognitive behavioral therapy

Modest Evidence for:
Strength training
hypnotherapy, biofeedback, and water therapy/exercise

Weak evidence:
acupuncture, chiropractic, massage therapy, electrotherapy, ultrasound

No evidence for:
tender trigger point injections, flexibility exercises.

Dr. Clauw over the years has changed his practice from where he would teach each new patient about 20 mins about fibro. He found that it was not long enough. So now he gives FREE afternoons to patients referred to him locally on the subject. If you are in SE Michigan, you can call for an appointment for one of these free lectures. He is a great speaker and very very knowledgeable and concerned.

Fibro is a very complex problem, and is now overlapping with other syndromes thought to be upregulated over stimulated conditions. IBS TMJ, low back pain, tension headache are examples.

If there is a damaged peripheral area of the body, then NSAIDs and opiods may be used cautiously. Examples are Osteoarthritis, Rheumatoid arthritis, and cancer. But if the pain is CENTRAL he feels use of opiods are not indicated and not useful. And as a matter of fact, in chronic Headache, use of opiods is now being discouraged, since new data shows that they perpetuate the cycle of central pain, and it is now not uncommon to show opiods actually causing chronic headache! But that is another topic, covered in this long seminar!

Dr. Clauw was unusual in other respects...he had no ties to drug companies in the disclosure statements. And he did not want to discuss off label use of other drugs at length. This is for liability reasons, and also because data is lacking at this time for those other agents.

Also, I am only the messenger here, so please keep that in mind!

Thank you so much mrsd for sharing this information with us! First of all, it's encouraging to hear that there are medical professionals out there who actually believe in this condition and realize it's not "all in our heads"!

Alot of what you said hits the mark in my particular situation. Narcotics - tried many of them and only succeeded in feeling like a zombie. The NASAIDS did nothing as far as pain. Trigger point injections -- OUCH!! Don't know what she hit, but almost threw up and passed out from the pain with no good result as well.

Goes along with an overactive immune system -- I also have MS which is thought to be the same. Triggered by a drug -- my fibro started while on one of the injectable drugs for MS. It is interesting to note that the pain doesn't come solely from the "trigger points". For example, I've found trying to crawl on my hands and knees is impossible because of the pain. Even on carpet, it feels like my knees are on broken glass.

At my up-coming neuro appointment, I'm planning on requesting a muscle relaxant for spasticity so guess I'll try Flexeril!

Did he mention any connection with weather changes since most of us experience excessive pain then, especially when the barometer is falling?

Osteoarthritis, yes, since my 20's. Family connection? Seems like everything was called arthritis or rheumatism. So far the only thing I've found that takes the edge off is Aleve (naproxin).

Thank you again and please keep us informed if anything else new develops!

Dr. Clauw is a very good researcher/doctor who does what my doc does on the east coast. They are buddies and know each other very well. Slowly they are breaking the code of FM but it is taking time and most docs are just doing what they need to do to keep their FM patients as pain free as possble.
Hopefully some use of meds available now will help. I have been down the road of all those meds and none of them worked. Only muscle relaxants and trigger point injections help so far. I am also on anti-d's and they only help so much too.
Please relief soon!

As always you are always there to help all of us with our complex medical condition. Thank you for recognizing the need to help those of us who deal with "beast" of fibro. The info you provided was most interesting and I am relieved that someone is finally looking into the genetics of the disease. As you may remember I have both fibro and RSD as well as now TMJ and burning mouth from chloral hydrate.
I do agree with him about the use of morphine - no help. Dr. Hooshmand really was against using that drug and said it would set you up for increased levels of pain. However, the exercise part he recommends is really impossible for me as I can do only minimal walking due to both RSD and fibro in back and now burning in soles of feet.
I plan on taking this article to all of my drs. to show them so they can understand my full body sensitivity issue. Some of them just "don't get it" when I say "don't touch me". This article clarifies this.
You are truly so kind to be of so much help to so many.
I am going to also post on the medications forum to ask a question.
Sydney

Hi Their,

Thanks so much for taking the time to post. Do you think PCR testing could help? I would appreciate your thoughts and wisdom on this. Much Love, Roz

Thanks for the new source of info for me. I'll pass it on.

FIBEROWENDY, who is the doc you see on the East Coast. Mine does as little as possible.
Janet

Coyote. The doctor I see is Dr. Don L. Goldenberg out of Newton Wellesley Hospital. I see him about once a year or so. He gives me the latest info and he keeps up with my progress on how I am feeling. He's a great guy. He doesn't prescribe anything just recommends to your primary what should be done for you. I tell you I don't know how many times that letter from my initial visit has saved me with new docs.
He knows Dr. Clauw and others doing research since he does the same things. Last time I saw him, he recommended taking vitamin D supplements along with your regular vitamins.
So there is a new fibro doc for those in the Boston area.

My view is he is missing a subset of fibro. That is the people that have fibro due to autoimmune disorders.
I have been through the anti depressants and none of them work. And the dose was to the level that i started to get serotonin syndrome.

I do not have depression. My fibro is due to damage by autoantibodies and high levels of INTERLEUKIN 6 from castleman's disease.

I do not believe that fibro is one disorder i believe that it is a group of disorders.
in many ways it is like MS or diabetes
In MS you have 4 different types. An diabetes you have type 1 and type 2

I believe that my fibro is due to low levels of GABA and/or Glycine in the CNS
The best meds i have found for my fibro are Gabapentin and a over the counter GABA supplement.
TO THIS DAY I HAVE DOCTORS THAT STILL WANT TO PUT ME BACK ON ANTI DEPRESSANTS. even through they do not work and the side affects are worse then the fibro. why because most doctors are trained that anti depressant are the best meds for fibro. even if they dont work.

I was a volunteer in the milnaciprin study and had a bad reaction to it. I broke out in huge welts on my thighs a few hours after half an initial dose. It's obvious I was on the drug - not placebo. It was a long hassle to get into the study and once in they tried to keep me in even though I reacted badly. Have also been in lyrica study that made me feel terrible. Started throwing it out. I'm not sure how well the adverse reactions are really recorded. I've been diagnosed w/mild fibro but think it's getting worse and/or I have other disease. I thought the glucosamine chondroitin was some help but gave me terrible stomach ache and diarrhea - of course I'm allergic to iodine. The anti depressants really scare me - have refused that route. No narcs either. Hope to find something!

I find this a very interesting post, and thank you, Mrs. D., for posting it. A couple of years ago I was lucky enough to get to see a rheumatologist who's considered one of the best in our state, and much of what he taught me about fibro coincides with the info you've passed on. He was very leery of trigger point injections, and told me that in his own opinion the only way they might benefit a person is through the placebo affect.

I've also done tons of research on the subject, although most of it was done several years ago, when I was first diagnosed with the condition. At that time I consistently kept coming upon studies where the the main conclusion was that in most people, fibro seemed to be triggered by any condition which would cause a loss of deep sleep. It could be emotional, psycholgical or physical, but after weeks with no stage IV sleep the body began to change in major ways. Like you, Mrs. D, I am only repeating what I found in my two years of studying this condition, and some physicians were at definite odds with others. However, I do know that the more sleep I can manage to get, the better I feel overall.