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 01-10-2012, 08:14 PM #41
maria bosquez maria bosquez is offline
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Lightbulb i-chica

I just want to for taking the time to share with us, I appreciate all the info you have posted, I look forward to your next posting
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Old 01-18-2012, 09:22 PM #42
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Default tender point analysis eliminated, not trigger point.

MRSD:

nice post.

one modification. If I remember right, it is the tender point analysis that is going to be eliminated as a requirement for FMS, not trigger point.

there is a nice summary of the recent Dr. Clauw talk at the "Phoenix Rising" site -- on its front page (although it does not mention anything about tender points or trigger points). I am a new member -- so I cannot post the Web address... just Google it and you'll find the article.

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mrsD (01-19-2012)
Old 01-19-2012, 02:56 AM #43
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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 #44
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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.



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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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Old 04-27-2012, 11:48 PM #45
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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 #46
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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 #47
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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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Old 05-25-2013, 10:13 AM #48
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Confused Overwhelmed and wow

I just joined this site and I am so thankful I did. Even just reading everyone's posts made me feel I'm not alone. I really get the "i'm 40 but feel like 90". I don't want to feel this way anymore. I have chronic headaches... tension I guess the most but leads to migraines. I'm suppose to see a neurologist in July at Vanderbilt and I guess go from there. I would love input from you all as to which direction to go. I just came off Paxil because I just took it while in Nursing School and all the stress with it. But all the pain is still there, from head to my toes. My shoulder blades and neck are unbearable at times. I can take a lot of pain but its to the point where I'm grouchy and I don't do things like I use to do. I've been taking Valium and Fioricet® (Butalbital, Acetaminophen, and Caffeine) and that can give me some relief for a very short while. I've taken Amitriptyline but those class of drugs make my ears ring very loud, so we stopped those in hopes of something else. I started Lyrica last night, 75mg and woke up this morning very dizzy. And I read on here about people taking 600mg a day. How does one function? Right now I'm tired, hurting and can't even think what to do next. Being in nursing.. I sure can't go around dizzy. The valium etc does not make me sleepy at all so I have no problems taking it and functioning. But I just live with the pain until I break and cannot bear it anymore. sigh... like I said... i'm just overwhelmed, hurting all over, and I don't know what to do as the drugs that are for Fibro seem to give me side effects I can't live with either. Any thoughts are appreciated so much!
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Old 06-19-2013, 03:03 PM #49
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Lightbulb New article on possible CAUSE of Fibromyalgia!

This is very interesting:

http://psychcentral.com/news/2013/06...gia/56233.html

nerves around certain blood vessels, which may malfunction and
actually cause Fibro.
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Old 11-06-2013, 11:53 AM #50
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Lightbulb

Here is another new paper on Fibro and its associated pain state:

http://psychcentral.com/news/2013/11...ays/61672.html
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