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.

generating questions.

It was difficult for me to condense the information presented by Dr. Clauw which
was a power point type thing... my syllabus does not have text, only power point slide copies.

First off... the main thrust of his lecture was the definition of fibro.
This syndrome is basically an overresponse by the nervous system to sensory and pain stimuli. In a fibro person (who inherits this tendency)...it is like a radio turned up to full volume all the time. In normal people there are feedback loops in the brain to turn DOWN stimuli, after they are perceived. In fibro this does not happen. So ALL stimuli tend to be preceived as noxious.

The facilitator compounds listed:
are in excess in fibro. So Pharma is looking at antagonists to these receptors.
For example a substance P antagonist is in phase II or III trials right now. Its target is depression, but it may prove helpful to fibro patients. I posted this on our Depression forum.

The inhibitor compounds:
are being looked at as reducers of fibro symptoms by increasing their activity at receptor level.

The pain loop is a complex circuit of ascending and descending fibers, and is really too complex to go into here.

Now if you look at the Most valuable treatments... gabapentin and Lyrica are listed as primary interventions at this time. Both do NOT affect GABA per se...here is there pharmacology:
The GABA functions are not primary but peripheral, and still not understood.

I would like to comment to Augoldminer...that some patients over the years on this board and Braintalk, have seen improvement in MS type symptoms and fibro by going on the gluten free diet. Gluten is a primary trigger for autoimmune issues in some patients. Some even do casein and corn elimination diets and find response to those as well.

Autoimmune issues can be triggered by viruses, and vaccines as well.
And they may exist in patients IN ADDITION to fibro..often people have several issues, which may or may not overlap.

Dr. Clauw believes that fibro is a genetically transmitted syndrome, and does not occur in certain people, because they lack the genetic error that allows the pain receptors to go into overdrive. That is his opinion at this time.

L-glutamine is thought to inhance GABA functions, and I have seen Inositol also recommended for this (it improves glucose utilization in the brain).

While Dr. Clauw does not work for drug companies, he did suggest that the combination SSNi and SSRi drugs help more than plain SSRi types. The new drug Milnacipran is very effective with very few side effects now used in other countries. It is very close to FDA approval here and may be available in one year or so.

I will also add that Dr. Clauw said that Fibro is the "last great frontier" that the drug companies are looking towards...
they want to find effective pharma agents because...well, frankly there is a huge financial gain to it. He predicts "blockbuster"
agents in the near future.

Here is the link to the new agent that may help with blocking excess substance P:
http://neurotalk.psychcentral.com/sh...ad.php?t=19026

I was wondering if you can tell me how much Gaba you take, how often ect