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
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.
Originally Posted by mrsD
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!)