I have FBS and CFS and so does my daughter who has a two year old daughter. The most troublesome symptom is chronic fatigue. We can deal with the pain, but the extreme fatigue is taking all the joy out of our lives. What can we do to boost our energy. We both take vitamin supplements and try to eat a lot of carbohydrates. Suggesting exercising is not a good idea because spending a half hour exercising means we will spend more time being exhausted. Any ideas are welcome. I also have Scleroderma, but my daughter does not. Fibromyalgia is genetic, but thankfully Scleroderma is not, as far as we know.
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A site for good tricks for Fibro that really work. http://www.FibroFix.com
Free web site.
July 25, 2008 - 8:43amThis Comment
Have you tried any of these "alternative" treatments? I found this on the Mayo Clinic website as current treatments that are being studied for CFS.
* Acupuncture. This treatment has been studied in conjunction with fibromyalgia, which is similar to ME/CFS. In one clinical trial, patients improved significantly, especially when it came to fatigue and anxiety.
* Methylphenidate. Methylphenidate is the drug in Ritalin and Concerta and is commonly used to treat attention-deficit disorder (ADD). At least one study has found that it helped CFS patients with fatigue and concentration problems.
* Corticosteroids. Studies have had contradictory results as to the effectiveness of hydrocortisone in treating chronic fatigue syndrome.
* D-ribose. Some research suggests that supplements of this form of sugar may significantly improve ME/CFS symptoms.
May 22, 2008 - 2:01pmThis Comment
Thanks for writing. I'm sorry that you and your daughter are both dealing with fatigue. We received an answer to your question from Dr. Jacob Teitelbaum, a board certified internist and Medical director of the Fibromyalgia and Fatigue Centers of America(www.fibroandfatigue.com) and the author of ”From Fatigued to Fantastic!” Here’s how he answered your question ….
The good news for your readers is that Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FMS) are now very treatable. I know what she is going through. I had CFS/FMS in 1975 and it knocked me out of medical school and left me homeless for a year. It also taught me how to effectively treat fatigue and fibromyalgia.
CFS/FMS is an “Energy Crisis” which can be caused by any of a number of infections, stresses, or injuries. It causes a master circuit (called the hypothalamus-which controls sleep and hormones) to decrease its function -just like blowing a fuse/circuit breaker in a house.
These are the 5 key areas that need to be treated for your “circuit breaker to turn back on” and for fatigue and pain to resolve. They are also powerfully effective for day to day fatigue. We like to say we need to be aware of what makes us SHINE.
1. Sleep …
2. Hormonal deficiencies …
3. Infections …
4. Nutritional supplementation …
5. Exercise as able …
Our study titled "Effective Treatment of CFS and Fibromyalgia" (see full text at www.Vitality101.com) showed that 91 percent of patients improved with treatment (p<.0001 vs. placebo), with an average improvement in quality of life of 90 percent.
Many patients no longer even qualified for the diagnosis of CFS or fibromyalgia after treatment!
In support of our work, an editorial in the Journal of the American Academy of Pain Management noted "The study by Teitelbaum and years of clinical experience make this approach an excellent and powerfully effective part of the standard of practice for treatment of people who suffer from fibromyalgia”.
There are many other helpful and necessary treatments available. The good news is that you can get well now!
You may also find this post from someone familiar with chronic fatigue informational.
https://www.empowher.com/community/blog/tleelewis/to-woman-and-her-daugh...
May 21, 2008 - 3:29pmThis Comment