Letters From Our Readers – Q & A Session 1-24-07

FM and Genetics:

Q: I would like to know if anyone knows if the tendency toward FMS can be hereditary. My son has much the same kind of pain I had for many years, until finally a prescription antidepressant virtually eliminated my pain. – Kathryn

A: As for the genetic angle, many people would say at least a subset of FM cases are genetically linked. Research is just really getting into gene studies, so we may expect new insights as their studies progress. Search at ImmuneSupport.com on the words “FM gene” and you’ll pull up such items as the following, and more. To read these particular articles, just enter the story number or copy and paste the title in the search box. “The genetics of Fibromyalgia Syndrome” (7626), “Mayo Finds Strong Indication of Genetic Link in IBS: A Syndrome Common to a Large Majority of CFS and FM Patients” (7174), “City of Hope Embarking on Three-Year Study of Inflammatory Gene Activation in FM Patients” (7428)


FM and Plantar Fasciitis:

Q: Is there a correlation between fibromyalgia and a foot condition known as plantar fasciitis? I have read elsewhere that there is a connection.

A: Other readers – patients and practitioners – may have additional insights for you on this question, but a quick search on fasciitis in the ImmuneSupport.com site pulled up this Tip of the Day dated 12-06-05: Pain can originate in the feet where muscles, ligaments, and joints become stressed and tender. Some people with Fibromyalgia also have plantar fasciitis, an inflammation of the fascia or thick fibrous area in the heel at the attachment to the heel bone. Treatment may include using anti-inflammatory medication, physical therapy, and cushioning (such as SPENCO athletic inserts) to absorb the shock to the heel as you walk. Good athletic shoes and orthotics can also help. Talk to your physician if you think you might have plantar fasciitis. (Source: The Fibromyalgia Help Book: Practical Guide to Living Better with Fibromyalgia by Jenny Fransen, RN, and I. Jon Russell, MD, PhD) Also, FM specialist Mark Pellegrino, MD, mentions in his book Fibromyalgia Up Close and Personal (available via his practice at 330/498-9865), “A condition known as plantar fasciitis is seen commonly in Fibromyalgia…People with Fibromyalgia seem more prone to getting tendonitis and the feet have many tendons that are candidates to be painful.”


About the D-Ribose Study:

Q: There was a recent study done by Dr. Jacob Teitelbaum and two other doctors…on The use of D-Ribose with women and men with FMS and CFS. This is in the latest Journal of Alternative and Complementary Medicine…[that concluded] “D-Ribose significantly reduced clinical symptoms in patients suffering from FMS&CFS.” I was curious if this is a real dietary supplement and is it safe to try? – kul-szel

A: For more information about the dietary supplement D-Ribose and the small preliminary study you cite, see the report from our December 6, 2006 newsletter, "Many FM & CFS patients in D-Ribose study report quality of life improvements," at http://www.immunesupport.com/library/showarticle.cfm/id/7565

Briefly, D-Ribose is a form of sugar that all living cells require for creation of ATP (adenosine triphosphate), the body's main source of energy, and for other essential functions at the cellular level. Our bodies make it from glucose (blood sugar), but it has also long been available as a dietary supplement, produced by fermentation of corn syrup. It can also be obtained from some RNA-rich foods substances such as brewer's yeast.

Is D-Ribose supplementation safe? Because it is a form of sugar, and might elevate uric acid levels, it is not recommended for individuals with hypoglycemia, diabetes, gout, or elevated uric acid levels. As always, we emphasize it is essential that you avoid making any change in your health support plan or regime without first researching and reviewing it collaboratively with your professional healthcare team.

Meanwhile, we will watch for the results of Dr. Teitelbaum's further studies of D-Ribose supplementation in patients with FM and CFS.


To Tell or Not To Tell:

Q: I’m just wondering about other FM patients’ experiences with employers’ reactions to their Fibromyalgia and any limitations it might place on their work. Do most FM sufferers keep their illness to themselves or, if they do share what’s happening to them with their supervisor, do they suffer reprisals such as being fired for being absent too often or a fear of ballooning health costs? Any information you could give me would be much appreciated. – Susan

A: Your concerns are valid. Although the Americans with Disabilities Act (ADA) makes it illegal for employers to discriminate against employees because of a disability, subtle reprisals can be difficult to prove. Ultimately each person has to evaluate her own individual circumstance. Have other employees with health issues been fired or demoted? How well do you know your supervisor? Is he or she generally an understanding person or only focused on the bottom line? In the end, you have to weigh the pros and cons and use your best judgment. To find out how other FM patients have handled this question, try going to the message board and ask others to share their experiences.


Anything on Relapsing-Remitting MS?

Q: I was diagnosed with Fibromyalgia about six years ago, and have been struggling with the physical and cognitive symptoms for at least eight years. I have just received a tentative diagnosis of relapsing-remitting MS. I am curious to know if others have had the same experience or if there is an incidence of the occurrence of both disorders in any research studies to date. Thanks again for your continued good work in keeping us informed. – Andrea

A: According to a recent study published in the Journal of Clinical Virology, there exists a subpopulation of CFS patients who have chronic, active infections with HHV-6. This subset of CFS patients is remarkably similar to patients with relapsing-remitting MS with respect to their active HHV-6 infections. See the abstract of this article – “Active Human Herpesvirus six (HHV-6) infections in patients with Chronic Fatigue Syndrome (CFS) and relapsing-remitting multiple sclerosis (RRMS)” – at http://www.immunesupport.com/library/showarticle.cfm?id=7642


What Do the Stars Mean?

Q: I don’t understand your rating system at the bottom of your pages, with the stars. – Frances

A: Good question. We ask you to rate our articles so we will know what you find most interesting and helpful. On the left are five blank stars. Clicking the first star to the left means you didn’t care much for the article. The fifth star is the highest rating and means you thought it was a great article. (As you move your cursor over the stars, you will see them turn yellow.) The five stars on the right show you the average rating based on those who have voted thus far.


Switching Newsletters:

Q: When I signed up [for the newsletter], I was really after CFS more than FM, and also I clicked go before I remembered to change it to text format. I can’t find anywhere on the page to take me to the settings area to change it. Do you have a separate section for CFS only? The present issue I’ve just received is more of FM and very little on CFS, and I would prefer it to be the other way round. – Colin

A: You can choose to receive either the CFS or FM version or both. To change your newsletter choice and to switch to the text version, simply e-mail us at customerloyalty@prohealth.com and ask for it.


Missing Newsletters:

Q: I have signed up for your "Treatment and Research e-mail bulletin", but since October 2006 I have only received two copies. Is it really supposed to arrive so seldom? – Maciej

A: If you signed up for both the FM and CFS bulletins, you should be receiving one each Wednesday. If you only signed up for one of them, you should receive it every other week. Check to make sure your e-mail program is not identifying the newsletters as spam and sending them to a junk mail file. If that’s not the problem, e-mail customerloyalty@prohealth.com so we can make sure we have the correct information for you.

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