fibromyalgia or chronic fatigue syndrome

by reneeisorym 27 Replies latest watchtower medical

• 

  SWALKER

  I have fibromyalgia...was diagnosed with it over 15 years ago at the Mayo Clinic. There were 6 women and 1 man, in the KH, diagnosed with it by a physician/specialist. What's interesting about fibro is that all of us also had other major health conditions. The guy died within a few years after also finding out that he had cancer. I have to wonder if the body isn't reacting to major changes and is taking charge and making us slow down. I used to be a workaholic, cramming everything I could into a day....until fibromyalgia stopped me in my tracks. I later started having severe pain in my lower back and found out that I have degenerative disc disease that is progressively getting worse. I also found out that I had 2 injured discs in my neck (that was cutting off part of the blood supply to my brain) and had surgery to replace those.

  So if someone tells me that they have fibromyalgia, I wait to hear what major health problem shows up. I knew more NON-JW's with fibromyalgia, but that is probably due to the fact that I had many friends in the community.

  Swalker
• 

  vitty

  Yep............................My niece has just been told shes got ME.............................that was a 80`s illness where everyone seemed to have it now it fibromyalgia.

  Now im not saying this illness doesnt exist, its just a convenient malady to miss meetings and FS without peeeps thinking you are spiritually weak

  Its a terrible thing that ppl either present these symptoms to their doctors and it meets with the criteria....exhaustion for one..............Or peeps need a medical excuse to not going to meetings

  Both are very sad
• 

  MsMcDucket

  Its a terrible thing that ppl either present these symptoms to their doctors and it meets with the criteria....exhaustion for one..............Or peeps need a medical excuse to not going to meetings

  Both are very sad

  It's not a disease or syndrome that only Jehovah's Witnesses get. If it were, they'd call it the Jehovah's Sicknesses.
• 

  blondie

  I think these type of illnesses have more credibility in the WTS because the so-called spiritually mature are falling ill...including CO wives.

  The key is when people diagnose themselves and don't seek out qualified medical help...

  I have an auto-immune disease and it was not considered credible by some elders...but then they were just as cruel to their wives and daughters and in some cases sons.

  It is not only a disease that JWs get...

  And yes you need a doctor's note to miss meetings in the case of some elders, almost anyway.

  Blondie
• 

  truthsetsonefree

  I believe Blondie hit the nail on the head. I have several, including my spouse, in my Hall and in neighboring ones as well. Between the hectic schedule bringing out problems, and people needing a valid excuse to get out of all the work JWs have to do, this is very common among JWs. I also am close with many outside the org because I was active in my child's school PTA. Almost no one had these complaints.

  tsof
• 

  MsMcDucket

  I ran into a lot of nurses that had the illness, which had been diagnosed by a doctor. I kept thinking that nurse's get exposed to a lot of viruses and bacteria, so that why we are more likely to get the illness. Now, you guys are telling me that it happens to a lot of Jehovah's Witnesses. I suspect that they get exposed to a lot of viruses and bacteria out in field service.
• 

  SWALKER

  Just because some may use it as an EXCUSE and they don't really have it, please do not minimize the legitamacy of fibromyalgia or chronic fatigue syndrome. These illnesses are very devastating and life altering.

  I know lots of people that are NOT JW's that have it, but many aren't that inclined to talk about because of the response they get from those that don't think it's real. I have a cousin in Florida, never been near JW's, that had to take several years off from teaching school because of it. My brother has it as well, and he and I compare notes periodically and keep each other abreast of any new information we find out from the medical community.

  I do agree that many of JW's are depressed and they are embarrassed to speak out about that as well because of the response they get. Whether they are depressed or have other health issues, should people put them down for this?????? That attitude helps a lot!

  Swalker
• 

  Mulan

  I had it, and so did about 30-40 others I knew. I swore I would never get it and thought those women were all raging hypochondriacs. I was so upset when the doctor told me what I had.

  My version was caused by a virus, so it was contagious. That might explain why so many got it. My doctor did a blood test to find out why I was so run down, headaches, fevers, sore throats, tired, insomnia, etc. etc. The virus is Epstein-Barr and I had it in an active phase. It's the same virus that causes Mononucleosis, and I had that in high school (3 months) and again when I was in my mid 30's (about a month). So it was dormant in my body.

  Evidently it comes and goes depending on your immune system and stress level. My doctor told me to go home, eliminate all the stress from my life, that I could, and I would be well in about two years. I couldn't eliminate much of the stress, since I was married to a busy elder, had 3 teenagers, and a young child, and was a regular pioneer. But I did work on building up my immune system, and I was well in about 3-4 months.
• 

  MsMcDucket

  Just because some may use it as an EXCUSE and they don't really have it, please do not minimize the legitamacy of fibromyalgia or chronic fatigue syndrome. These illnesses are very devastating and life altering.

  My sentiments, exactly, SWalker.

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  November 1, 2006
  OUR MISSION "To empower patients to take control of their health by providing comprehensive health resources, current treatment information, quality health products and advocating for the rights of the patient."more THIS WEEK'S SPECIAL NEW PRODUCTS Fibronol FibroBoost Stevia Extract Packets Stevia Extract Liquid EZ Dose Pill Pouches FeelBrightLight Informational DVD'S The Joy of Nutrition I Remember Me Fibromyalgia: Show Me Where It Hurts Books... 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That is the consensus expressed in the more than 500 patient letters we have received in the past two months alone. Patients are fed up with the name. Researchers are fed up with the name. And CFS doctors are fed up with the name. To remedy this situation and establish an appropriate name, we have begun to organize an advisory committee consisting of some of the most respected CFS researchers and doctors in the United States. They will address the name change issue and provide a consensus opinion on appropriate alternative names. Early members of this "Dream Team" of experts include Dr. Lucinda Bateman, Dr. Leonard Jason, Dr. Charles Lapp, and Dr. Daniel Peterson. And this week I am delighted to announce the newest member, Dr. David Bell. Dr. Bell is one of the world's leading authorities on CFS and is an instructor at Harvard Medical School and author of the acclaimed book, "The Doctor's Guide to Chronic Fatigue Syndrome: Understanding, Treating, and Living with CFIDS" (available at Amazon.com). He is eminently qualified to sit on the name change committee and his presence will be greatly appreciated by CFS sufferers everywhere. We are honored to have this compassionate humanitarian on board, and welcome him to the team. The goal is find a suitable name to replace Chronic Fatigue Syndrome and then make it happen. Though the committee is not complete, we are only a few steps away. Yours for better health, Rich Carson ProHealth Founder and CFS Patient CFS Research Abstracts Most of these CFS-related journal articles are currently offered online ahead of print: Antiviral Pathway Deregulation of Chronic Fatigue Syndrome Induces Nitric Oxide Production in Immune Cells that Precludes a Resolution of the Inflammatory Response Conservation of Resources and Quality of Life in Individuals with Chronic Fatigue Syndrome Long-Term Treatment with a Staphylococcus Toxoid Vaccine in Patients with Fibromyalgia and Chronic Fatigue Syndrome Reliability of a Chronic Fatigue Syndrome Questionnaire Lyme Disease Presenting as Chronic Fatigue Syndrome Depression, Chronic Fatigue Syndrome, and Fibromyalgia: An Update Chronic musculoskeletal pain in patients with the Chronic Fatigue Syndrome: A systematic review Disrupted spatial memory is a consequence of picornavirus infection Special problems of children with ME/CFS and the enteroviral link Translation and validation of the Dutch language version of the CDC Symptom Inventory for Assessment of Chronic Fatigue Syndrome (CFS) CFS in the News NIH Funds Important New CFS Research Studies Selecting from 29 proposals, the National Institutes of Health has picked seven CFS studies to receive $4 million in funding. more Product Spotlight I Remember Me ProHealth is honored to offer the acclaimed documentary, I Remember Me, for purchase at ProHealth's Immunesupport.com store! After winning awards and honors at numerous film festivals, including "Best Documentary" at the Denver Film Festival, the compelling film on Chronic Fatigue Syndrome, I Remember Me is now available on DVD. This 74-minute documentary portrays in powerful detail the gut wrenching agony sufferers must endure, while simultaneously facing the skepticism of a frequently uncaring and uninformed medical establishment. I Remember Me speaks to the universal themes of loss, human perseverance, and our difficulties in grappling with uncertainty. Some of the film's highlights include interviews with noted Chronic Fatigue Syndrome researchers David Bell MD, Harvard; Drs. Daniel Peterson and Nancy Klimas MD (both past presidents of the International Association for Chronic Fatigue Syndrome); and world renowned virologist and immunologist, Jay Levy MD, co-discoverer of the HIV virus. Patient interviews include candid discussions with soccer star and gold medal Olympian Michelle Akers, and legendary Hollywood director Blake Edwards (Breakfast at Tiffany's, The Pink Panther). For more information and reviews click here. Meet The Patients Meet Rik Carlson (not to be confused with ProHealth's Rich Carson), a CFS Patient and 10-Year President of the Vermont CFIDS Association Rik Carlson speaks for CFS patients everywhere in recounting his experience at "the receiving end of an 800 number," taking hundreds of calls asking the same thing: "Do you know a good doctor? My doctor doesn't believe this to be real." more The Personal Story of a Doctor with CFS "Most MD's practicing now were never formally educated on a devastating illness that affects up to one percent of the population," writes a Family Practice Physician currently debilitated with CFS. "When I revealed to my colleagues that I had CFS, it was like telling some of them that I had seen a UFO." more Chronic Fatigue Syndrome Education CDC Offers "CFS Toolkit" and Educational Courses for Healthcare Professionals "To help break the cycle of frustration," the Centers for Disease Prevention and Control has created a Web page where physicians and others can find a growing collection of resources to guide them in the clinical care of CFS patients. more Disability Information and News Patient Advocate Foundation (PAF) Will Act as Liaison Did you know? This national non-profit organization will provide active mediation services to anyone with a chronic illness - working as a liaison with insurers, employers, creditors, healthcare providers.* more Letters From Our Readers About the CFS Name Change Ideas and Discoveries Don't forget Dr. De Meirleir A chat with doctors would be so useful Let the science lead us Recommending Dr. Paul Cheney Patient's long experience with Dr. Lapp "says it all" Seeking others to share shelter and expenses Remember who chose this deplorable name Why the change to such strange subject matter? Without better recognition of CFS in the medical community, we're on our own Food allergy test offered help after 11 years & 50 doctors We also need famous spokespersons for CFS Found the answer was working on immune system In praise of probiotics After 20 years, found it was Lyme More success stories, please Weekly Inspiration "I think dogs are the most amazing creatures; they give unconditional love. For me they are the role model for being alive." - Gilda Radner Consolations Along The Way Chronic Fatigue Syndrome is a devasting disease, but nevertheless we often find consolations and new sources of pleasure along the way. To find out what other patients have learned, take a look at the CFS & FM Message Board thread titled "Let's discuss positive ways that FMS/CFIDS have affected you." As a formality, if you don't have a password you'll need to provide one - it takes less than a minute. Your Feedback Counts! At ProHealth we are committed to bringing you the most up-to-date information on Chronic Fatigue Syndrome and Fibromyalgia. We are always striving to improve our services, and your opinion counts. If you have any comments, suggestions or ideas, please let us know. Include your full name if you agree that we might share your letter with other readers. Send Us Your Feedback About ImmuneSupport.com Published by ProHealth, Inc., ImmuneSupport.com is the Web's largest resource for Fibromyalgia and Chronic Fatigue Syndrome. Since 1988, ProHealth has raised and donated over 2.5 million dollars to CFS and FM research and advocacy groups seeking a cure. We believe in "commerce with compassion." Every purchase made at ImmuneSupport.com funds research - as does every purchase made from ProHealth's Health Resource catalog. Visit ImmuneSupport.com
• 

  Nellie

  I was diagnosed with fibromyalgia in 1989 - before it became fashionable to have it.

  In the beginning, the doctor's I saw had absolutely NO idea what was wrong with me and tried to pass it off as "emotional stress." Needless to say, the stress of being called "emotional" only added to the stress of being sick! It took a move to Florida and a visit to a new doctor to find out that what I was suffering from actually had a name! That alone was worth the move!

  I am a strong woman and I put everyone else before myself - I also have a high tolerance for pain. I actually walked around hemorraghing internally for 2 weeks following a ectopic eruption because I didn't want to cause a fuss! I say this to say, that there are days when the thought of brushing my teeth is exhausting to me. There are days when I don't stop, but I don't accomplish a thing - life moves in slow motion until I just stop. Fortunately, these days are few and far between. Having fibromyalgia is like arthritis (some days it flares up and other days you just deal). You are never out of pain completely and yes, that can cause depression - especially when you add in the JW stresses.

  It is called a syndrome because it manifests itself differently in everyone. Basically, it's chronic fatigue syndrome - plus PAIN. That's the difference between the two conditions. And like I said, there are good days, bad days and days from hell! I push myself to do all I can, whenever I can and when I can't, I don't.