Originally Posted by beagle99

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.

Originally Posted by AUGOLDMINER

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.

Originally Posted by mrsD

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) Trigger 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!