Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).


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Old 01-19-2012, 02:56 AM #1
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Lightbulb

Dr. Clauw discussed the "tender" (I thought he said trigger).
My mistake. I went back to the syllabus given us at that conference, and it is tender point. I'll correct my previous post.

Googling Dr. Clauw will bring up many new interviews I assume. He is a very good resource and his lecture was the best that day IMO.

Thanks for the heads up.

P.S. that conference which is held every spring is TEN hours LONG...all in one day. It is tough sitting thru it all! (especially with arthritis in my spine!)
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Old 02-25-2012, 08:12 PM #2
fibrosince85 fibrosince85 is offline
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Default Thank you for your interesting post

Hope this post isn't too long, but since I have improved so much over the years I had to explain how. In my 40's I felt like 90, but now at 60 feel more like 50. Still can't work full time, but do work a demanding job 28 hours a week.
I have had fibro since 1985 and was diagnosed around 15 years later. My most prominent symptoms have been fatigue and severe muscle pain and stiffness which progressed to significant fibro fog over the years. Was finally diagnosed with clinical hypothyroidism (slow deep tendon reflexes, edema, etc) with almost normal thyroid blood tests and was referred by my endocrinologist to a book "from fatigued to fantastic" 2007 by Jacob Teitelbaum, M.D He discusses the links between CFS and FM and the role of mitochrondria. I have been on his recommended supplements: acetyl carnitine, alpha lipoic acid, CoQ10 (now on ubiquonone) with the addition of ginger since 2000 and after about 4 years, the rhuematologist that I saw was most impressed at how much the tender points had improved! I used Ribose for about 6 months, but did not see much change. I was an athlete but with children and work had been rather remiss about regular physical exercise. I started walking - in the beginning could walk about 1/4 mile before getting too tired and am now at the point where I can climb a bit in the White Mts! I try to walk about 7 miles a week. This is limited by work as much as fatigue. I no longer take any pain medicine on a regular basis.

Also was diagnosed with Vitamin D deficiency (below 20) and with supplementation 5000 IU a day am now in the mid range.
Recently diagnosed with primary hypersomnia (a form of excessive daytime sleepiness) and take Nuvigil for this. Possible that the fog was from the hypersomnia and not fibro.

Summary: Fibro rx: alpha lipoic acid, acetyl carnitine, ubiquinone, ginger

Thyroid: armour thyroid
Vitamin D
General: Omega 3 fatty acids, Exercise and adequate sleep.
Pain at night definitely makes the fibro pain worse which ends up in a vicious cycle.

P.S. U.S.A. research seems to focus on pain, but other research abroad has done interesting work on mitochondria which can only use Ribose for energy. For some reason, people with fibro the mitochondria may have switched from the normal aerobic metabolic paths to anaerobic paths which results in a build up of lactic acid which then gives muscle pain.



Quote:
Originally Posted by mrsD View Post
Dr. Clauw discussed the "tender" (I thought he said trigger).
My mistake. I went back to the syllabus given us at that conference, and it is tender point. I'll correct my previous post.

Googling Dr. Clauw will bring up many new interviews I assume. He is a very good resource and his lecture was the best that day IMO.

Thanks for the heads up.

P.S. that conference which is held every spring is TEN hours LONG...all in one day. It is tough sitting thru it all! (especially with arthritis in my spine!)
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"Thanks for this!" says:
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Old 04-27-2012, 11:48 PM #3
guitargal guitargal is offline
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Default

"the links between CFS and FM and the role of mitochrondria. I have been on his recommended supplements: acetyl carnitine, alpha lipoic acid, CoQ10 (now on ubiquonone) with the addition of ginger since 2000 and after about 4 years, "

4 years? hum i started all those in the fall.. i did so much research last fall and i totally think it has to do with the mitochondria and lactic acid..

with me i do not eat enough. i need to fuel my body so it can work properly. i will start the acetyl carnitine, alpha lipoic acid, CoQ10 again.
I take D because i was at 30 in Nov.
extra calcium because i am pre osteoporosis... osteopenia? i am 50 y.o.

started virgin coconut oil in my smoothies.. thanks i feel hope!
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Old 10-18-2012, 08:04 AM #4
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Lightbulb why painrelievers may not work for Fibro:

http://www.med.umich.edu/opm/newspag...bromyalgia.htm

and another good link:

http://www.med.umich.edu/opm/newspage/2007/hmfibro.htm

These links may be archived soon, so take a look at them now.
It appears that U of Mich takes them down after some time elapses.
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Old 04-24-2013, 06:40 AM #5
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Lightbulb NEW: Blood test for Fibromyalgia:

This was posted today on the PD forum here.

http://www.imperialvalleynews.com/in...romyalgia.html

It explains a new blood test (fairly expensive) to identify a
specific immune factor in the blood that is involved with Fibro.

Quote:
The identification of this immune system pathway was not only honored with the 2012 American Association for Clinical Chemistry’s “Outstanding Research in Clinical and Diagnostic Immunology” award; it has also led to the first objective test capable of making a diagnosis of fibromyalgia.

“What we discovered over years of research is that fibromyalgia patients have an abnormal immune system,” said Bruce S. Gillis, MD, MPH, lead researcher and founder of EpicGenetics. “These peer-reviewed results have finally been able to ‘tear back the curtain’ to reveal that fibromyalgia is an immune system dysregulation disease relating to the production of protein molecules called chemokines and cytokines by a certain type of white blood cell.”
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