Mad about this Mayo Clinic description

Discussion in 'Fibromyalgia Main Forum' started by Empower, Oct 28, 2005.

  1. Empower

    Empower New Member

    I found this on the Mayo Clinic website of all places! If this condition is not crippling or progressive, why have I gotten worse over 12 or so years, and why do I have trouble walking?? READ BELOW


    By Mayo Clinic staff

    Article sections:
    Signs and symptoms
    Risk factors
    When to seek medical advice
    Screening and diagnosis
    Coping skills
    Complementary and alternative medicine

    You hurt all over, and you frequently feel exhausted. Even after numerous tests, your doctor can't seem to find anything specifically wrong with you. If this sounds familiar, you may have fibromyalgia, a condition that affects an estimated 3 million to 6 million people in the United States. Approximately 80 percent to 90 percent of affected people are women.

    Fibromyalgia is a chronic condition characterized by fatigue, widespread pain in your muscles, ligaments and tendons, and multiple tender points — places on your body where slight pressure causes pain. Previously, the condition was known by other names such as fibrositis, chronic muscle pain syndrome, psychogenic rheumatism and tension myalgias.

    Although the intensity of your symptoms may vary, they'll probably never disappear completely. It may be reassuring to know, however, that fibromyalgia isn't progressive, crippling or life-threatening. Treatments and self-care steps can improve symptoms and your general health.

  2. laura81655

    laura81655 New Member

    When are they going to realize that this is an autoimmune disorder just like RA, Lupus, MS, etc. It DOES progress, it is in so many more areas now than before.
  3. Suzan

    Suzan New Member

    I saw it a couple years ago when I was first dx'd and looking for info. This is a big load of crap in my opinion..and does little to adress what fibromylagia is...I sure wouldn't go there for treatment for it!
  4. Mar19

    Mar19 New Member

    I've seen this many places and I don't believe it either. I really think that this point-of-view will change eventually. After all, it's only been a decade or so that the medical community has recognized FM/CFS as a real condition anyhow.

    I am considerably worse than when I was first Dx'd 3 or 4 yrs ago. As for it being non-crippling, I don't agree with that either. There are many times when I am completely unable to even navigate around my own house. Forget having a "normal" life -- our normal is quite different from most people's.

    Perhaps the medics need to find a better way explain our diseases. I find the last paragraph from Mayo quite condescending.

    I'm right behind you, Empower!!

  5. cz0711

    cz0711 New Member

    My name is Carol and I am new to this board,
  6. cz0711

    cz0711 New Member

    Oops, I was so aggravated I pushed the send button before I finished!!

    This post hit a raw nerve with me. When I first became ill back in 1987 I spent several years trying to be diagnosed (sound familiar?). During that time, I had a complete workup at the Mayo Clinic in Jacksonville, FL - I spent the better part of three weeks there undergoing every test in the book, including a psychiatric evaluation. In spite of all kinds of evidence to the contrary, including the very abnormal bloodwork and extremely high titers for several viruses - their final diagnosis was that I was depressed and just needed to check myself into their psychiatric ward and "get my life together" and I would be just fine.

    At the time, I was devastated. I had gone from a very active life to having to lie down in the middle of a shower - almost overnight. I had heard wonderful things about Mayo Clinic and was so hopeful that they would be able to help me. When I was able to review my test results, I just couldn't believe that they ignored all of the physical findings and just thought I was a little crazy.

    Thank God, I soon found another Dr. who was able to diagnose me - mostly using the test results from the Mayo Clinic. I never checked in for their "get your life together" program but I was aware that they never really accepted CFIDS/FMS as a valid illness. When I saw today that they are still downplaying the debilitating effects of these illnesses after all these years, it just made me see red!! After 18 years, I am living proof that this disease is progressive, crippling and sometimes life threatening. I am just so grateful that I was able to find the wonderful, compassionate and excellent care that has sustained me through all this time - I surely didn't find it at Mayo Clinic.

    Thank you all so much for letting me vent -- I feel better now ((-:.

    Carol in FL

  7. FM58

    FM58 New Member


    They are an excellent facility for DIAGNOSING conditions, especially rare and strange conditions. They are wonderful about pulling staff together to work together. They are terrific about corresponding and working with your local rheumatologiat or other specalist.

    I do know people who have been helped by Mayo-,people who where diagnosed with rare unusual conditions that their local docs could not diagnose. So, Mayo rightfully has it's useful place, just not for fibro, chronic pain or CFIDS.

    However, once they figure out your condition is fibro- forget about it!!! It's all about their "Behavioral Physical Therapy Program" You follow their program & you will get better in 6 weeks! You must to follow their program to the letter of the law to improve.

    It is unfortunate that a "clinic" of such good reputation has such a shallow outlook on fibromyalgia. Those of us w/ fibro, then know to steer clear of such a place- and need to educate others also to stay away. There are other highly respected "clinics" that do have a better understanding of our condition.

  8. Empower

    Empower New Member

    My sister want me to go to the Cleveland Clinic for my FMS and CFS, because she is as frustrated as I am with the condition.

    But from what I gather from postings on this board, their attitude is about the same as Mayo???

    Please correct me if I am wrong
  9. kaiasmom

    kaiasmom New Member

    WOW, well that's reassuring!! I would definitely say that my fibro has been progressive.....and at times crippling. I guess they just don't know. I don't think anyone could really know unless they have it, but you would think the medical community would have a clue!!

  10. Bambi

    Bambi New Member

    it before they "corrected" it! I used to write them ten or more letters a week when it was "it's all in your head" was on their site. They did change the site and sent me the new version to see what I "thought". I told them then that it was an "improvement" but still way off base.
    They weren't about to change anymore.

    The clinic here in Arizona has really messed with two of my friends and made one friend so upset she left crying. The trash they wrote in her final report was total nonsense and only because she is Bipolar and therefore they again think evrything is mental. I wouldn't pay a swuare dime to go there for anything. My Bipolar friend had to go through years more of tests etc to find out she has a serious colon problem brought on by an unnecessary removal of her gall bladder. Not exactly a mental problem.

    Since I was in a one woman writing campaign when they changed it the first time I would suggest, and I hate to say it, that we should all write to them again and again about how WE have progressed and how it is NOT something in many cases that any self help is going to FIX or improve
    much. They help "some" but for the more severe of us not much. If anyone is so inclined I'll get on the letter writing again with them!
  11. elsa

    elsa New Member

    You should see their treatment plan for CFS/FM. It'll burn you up!

    Look up "trevor" ... he has been posting about his diagnosis problems and he has a Mayo Clinic thread going.

    Many have posted about the clinic's idea on how to treat Fm patients.

    Warning, I don't think you're going to like it.

    [This Message was Edited on 10/28/2005]
  12. elsa

    elsa New Member

    Stay away from there too. I read an article in an arthritis magazine yesterday that was written around a rheumatologist's treatment plan .... this doctor works at the Cleveland Clinic. Some of his ideas could have been written 15 yrs ago ...

    I thought about you guys when I read it and started laughing. It said analgesics might help, but probably not. You need 30 minutes of exercise 3 days a week. He prefers a stationary bike for this exercise. And the topper.... The patient very most likely need ancillary medical treatment better suited to helping them ... psychiatrists can help deal with the emotional issues implicated in FM and their pain.

    You guys killed any body yet?! HAHAHAHA LOL LOL ... It was sooooo ridiculous I laughed until I cried. My Mom kept saying "What ... What is so funny ..." After I explained she mumbled under her breath "that pompus ashes ... Boo -Hiss - We don't like the CLeveland Clinic". Is that family support or what guys?!

  13. springrose22

    springrose22 New Member

    I totally agree, the Mayo Clinic is definitely in the dark ages when it comes to Fibro and CFS, therefore, maybe they are the same with other diseases as well. I would never go there. It is the same with CFS, I definitely feel a disease progression. Later. Marie

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