From Our Readers - Comments & Suggestions 06-16-10

Some NSAIDs Can Cause GI Bleeding & Some Can Cause Heart Problems

Re: The report, “Slow release NSAIDS pose greater risk of GI bleeding” (gives the statistics on each NSAID type) and another new study “Cause-specific cardiovascular risk associated with nonsteroidal anti-inflammatory drugs among healthy individuals.”

Aaaak! These NSAIDs. For a long time I have been using diclofenac patches for back pain because it works very well for me and doesn’t go through my stomach, so no risk of bleeding & ulcer problems like with a lot of NSAID pills. Now this study that includes everybody in the whole country of Denmark over age 10 says a prescription for diclofenac almost doubles a healthy person’s chances of heart problems & stroke – worse than Vioxx, which got banned by the FDA. FYI, Wikipedia lists more than 50 different product names for diclofenac. I hope my doctor can help me sort this out.  - J

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“Blood Feud” The XMRV Mystery Story

There’s a great two-part article on Mindy Kitei’s CFS Central Blog summarizing the XMRV science wars so far – “Blood Feud: Part 1” & “Blood Feud: Part 2” It’s a real readable, interesting history of what has happened so far. Almost like a mystery story with clues. Too bad we don’t know how it will end. - G

Note: According to Mindy Kitei's "About Me" she is a science writer who got interested in ME/CFS when she wrote an investigative article about Ampligen 16 years ago. She says, “Due to the disinterest of most of the mainstream press in comprehensive CFS coverage, I've begun this blog.” - T

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Read Fibromyalgia AWARE Online Free

The National Fibromyalgia Association's magazine, Fibromyalgia AWARE, is now available online – and it's free! Once you register with a username and password on the National Fibromyalgia Association website, you can access each new issue of their ‘glossy’ magazine, Fibromyalgia AWARE online. – K

Note: We received this reminder from Karen Lee Richards. Karen was a co-founder of the NFA and the first Executive Editor of this excellent publication, and is currently HealthCentral’s patient expert on chronic pain, at ChronicPainConnection.com. She also frequently contributes researched articles on nutritional supplement topics for ProHealth.

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Meds for FM Compared & Contrasted

Pain-Topics.org is a good site for info on chronic pain – especially news on pain drugs. This article [“Meds for Fibromyalgia Compared & Contrasted”] helps to sort out Cymbalta, Lyrica, and Savella in terms of what each one seems to do best...or not do. If you look at the little chart, you can tell which ones might work for your worst symptoms. Then, as we know, side effects are another matter. - E

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Chemical Sensitivity Collage Project Asking for Photos

If you have MCS, have a look at the article by Eva Caballe on "The Canary Report" website. ["Photo Request for Collage Project"] She got the idea for a collage with pictures of people with MCS to raise awareness after seeing a dramatic picture of a woman with MCS on Facebook. She calls the project "Multiple Chemical Sensitivity Uncovered." She lives in Barcelona, Spain, and has a bilingual blog - NO FUN. Here's a link to the section with articles in English. - L

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Mayo Says Knee Replacements Holding Up Well to Exercise

After I had my knee replacement my doctor warned me to take it easy on exercise, and I've been scared to do as much as I would like. But last week I read this report from the Mayo Clinic that makes me think maybe I can get more active again. [“Knee Replacements Not Harmed by Most Sports"] Apparently no weight-lifting, though. lol. - C

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Shoulder, Arm, Hand Pain or Numbness? Could Be Thoracic Outlet Compression

I have problems with pain in my shoulder and tingling & numb hand & arm. Finally my doctor (she's a physiatrist) decided it is caused by Thoracic Outlet Syndrome. That means some blood vessels & nerves right under your collar bone are squeezed. I see a lot of people on the FM Message Board talking about these kinds of problems so I thought I would mention it. From what I read it is pretty common although most people don't have a clue what it is. - D

Note: About 8% of the population can develop this problem, according to a new paper published in Pain Medicine by Johns Hopkins doctors. They found that an injection of botox could help the symptoms for several months by relaxing the muscles and relieving pressure on the nerves ("Botox Eases Nerve Pain in Certain Patients"). But this is still an experimental therapy.

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World Map of Fibro & ME/CFS Patients - Add Yourself

There’s a “Google” world map of FM & CFIDS patients. You can add yourself to the map by entering your postcode/zip code and country and indicate what you have, and your sex. You can also leave a message for others. There are lots cool comments in different languages. – Q

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National Headache Foundation Videos on New & Emerging Migraine Drugs

The NFA website has two videos with information on new migraine drugs. There’s also a test to see if your migraine medicine is “causing more harm than good." - H

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New Edition of Bruce Campbell's Book on Managing FM & CFS - FREE Online

The CFIDS & Fibromyalgia Self-Help Program announces the free online edition of Managing Chronic Fatigue Syndrome and Fibromyalgia: A Seven-Part Plan by Bruce Campbell, PhD. The book is a thoroughly revised edition of the text used in the Program's introductory self-management course taken by thousands of people.

Read it online free (www.cfidsselfhelp.org/library/managing-chronic-fatigue-syndrome-and-fibromyalgia) or purchase a physical copy in our Store(www.cfidsselfhelp.org/store).

Bruce Campbell is the creator of the Program and a recovered CFS patient. Prior to CFS, he worked at the Stanford University Medical School on self-help programs for chronic illness. He is a graduate of Stanford.

A 501(c)(3) non-profit organization, the Program has conducted hundreds of self-help classes since 1998. The program's website contains information about three self-help courses, plus numerous articles on topics such as coping strategies, pacing and support. In addition, there are many patient success stories and information for family and friends.

- Bruce Campbell

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Fibromyalgia and Vitamin D

Hi - I have had fibro for 10 years and have had pain level at 8/9 for over 18 months (which was documented in a Stanford study). I have never taken vitamins and am still not an advocate of "vitamins". To make a long story short, after my normal 6 month blood work my primary doctor mentioned that maybe I should take 1000 mg. of Vitamin D for my bones. "By chance (?)" within 2 weeks my pain went from 8/9 to about a 2. Today it was about 1. First time in 10 years. I let him know and he did a Vit. D test. I was low. He has put me on 2000 mg for 2 months and then back on the 1000. Just in case this might help someone...I am passing it on. It is sure worth a try. - M

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Do Biomagnetic Therapies Provide Pain Relief?

Here's another article from Pain-Topics.org, on research findings about transcranial magnetic stimulation, etc. for knee arthritis and migraine (http://updates.pain-topics.org/2010/03/do-biomagnetic-therapies-provide-pain.html). - E

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First Trial of HIV Vaccine as Therapy for Infected Patients - Now Enrolling

Re: "Anti-HIV vaccine to be tested in human trials as HIV therapeutic"

This trial is only going to enroll about a dozen people with HIV, but apparently the vaccine worked very well in primates with HIV. It gives hope that some vaccine could help if XMRV turns out to be involved in CFIDS. - T

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Your Help Requested for Online Arthritis & Exercise Survey

Here's a notice of a study of North American Adults with arthritis that needs subjects to complete an anonymous online questionnaire (www.prohealth.com/arthritis/blog/boardDetail.cfm?id=60229). The researchers are based at the University of Saskatchewan in Canada. - G

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Note: This information has not been evaluated by the FDA. It is general and anecdotal, and is not meant to diagnose, prevent, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.