Anyone been through Mayo's Treatment Plan?

Discussion in 'Fibromyalgia Main Forum' started by LollieBoo, Sep 16, 2005.

  1. LollieBoo

    LollieBoo New Member

    My husband is interested in me going to Mayo Clinic for treatments- but that would require me being away from my home and my precious, precious babies- I need some pretty strong evidence that they have a good program there before I would be able to even think about TRYING to justify that enough to even allow myself to consider it! Three weeks!
    Thanks for any input here!
    - Lollie
    [This Message was Edited on 09/17/2005]
  2. LollieBoo

    LollieBoo New Member

    I have family in Rochester, actually, it's my husband's family- his aunt and uncle work at Mayo and I could stay with them and their family- but i don't really want to be that "exposed" to this extended branch of family. I know that in the course of three weeks, they would likely be exposed at some point to my misery/ depression/ anxiety, especially when you have such mitigating factors as not being able to hold my babies and missing out on three weeks of their precious development...
  3. jegleston

    jegleston New Member

    I have been to Mayo Clinic for diagnosis, but not their treatment plan. Mayo is a wonderful place with some of the best doctors, nurses and other staff to be found anywhere in the world. Mayo gave me the diagnosis of FMS after I tried to get help for almost five years and nearly a dozen doctors in my home area. Mayo also suggested that I get a sleep study when I went home, where it was confirmed (as they suspected)that I had OSA (Obstructive Sleep Apnea).

    Overall, my experience at Mayo was good except I came home very ill. While at Mayo, I caught something ugly and had to take some very powerful antibiotics for 30 days. The drug made any food taste... well, nasty. And they were expensive and made feel even more than usual fatigue.

    Fact: Mayo gets patients from across the world with a host of ailments some of which may be infectious. I didn't think about this beforehand, but I know the reality now.

    J.W.
  4. LollieBoo

    LollieBoo New Member

    All I could find out on their website was very vague about their actual treatment methods. They are "individualized", and that is why I want to hear from someone who has been or knows someone who has been through their program.

  5. Jen102

    Jen102 New Member

    From my experience, Mayo believes fibromyalgia is forever, that the most you can ever do is adjust to it, and take palliative measures to reduce pain, perhaps improve sleep, and use cognitive behavior therapy to improve your attitude about the illness. One friend who went to a class by Mayo said that most patients came in with assistive devices--mostly pillows--so that they could sit in the chairs long enough and with as little pain as possible, so that they could get something out of the class. The first thing the teacher did was to tell them all that they were exhibiting "pain behaviors" by bring the pillows, and they must stop this destructive behavior. That was enough for me!!! I can't imagine their lack of understanding that the patients were employing the methods they knew best to enable them to attend and learn from the classes. Did the teacher believe that they had actual pain, or did the teacher believe it was all in their heads and by bringing a pillow, they were increasing their symptoms?

    If your philosophy is that there is something broken in your body, and it may be possible to fix it, then perhaps the FFC, or other docs who treat the body wholistically, may be a good option. I chose to believe I can sometime in the future be well if we can unlock the key to the problem. I have tried many treatments and have recently found something that has given me great relief. If I had gone the other route, I would have learned to pace myself (to the point of not doing anything, because everything was beyond my limits), would be on narcotic pain killers (if they would let me have them), would be on anti-depressants, and other mind-altering meds. Please don't misunderstand--I don't disapprove of any of these when they are necessary, and have tried them all--but my hope is that there is a way to fix what ultimately is broken to allow me to recover and go on with my life. This is my two cents--everyone has their own experience! Jen
  6. LollieBoo

    LollieBoo New Member

    Thanks, Jen- I am currently limiting my activities (to nothing), taking meds... not narcotics, but if I really needed to be pain-free, I guess that would be what I'd need, doing all of the things I guess would be put in place at Mayo... hmmm........
  7. Sandyz

    Sandyz New Member

    I got diagnosed with Fm at the Mayo Clinic 15 years ago. I saw a reumy who told me I had to get rid of my stress or I would never get better. He was saying it was stressed caused. That was a long time ago and I hope they have improved by now.
  8. razorqueen

    razorqueen Member

    would you care to share with us the treatment you are doing that you have found to be successful? I am very curious as to what it could be!
    Raz
  9. snooker11

    snooker11 New Member

    i was diagnosed there last year. They basically ran tests and ruled everything else out. They recommended Trazadone which I tried but didn't really help me. They told me to get off Neurontin - that they didn't have much success with it for fibro pain. I did get off it and didn't notice any difference in pain levels. They said they had the most success with fairly high doses of SSRI's and low doses of tricyclics in combination. They do have a 3 day Fibro program but I did not do that. i think the program might be for people who have no idea what fibromyalgia is and how to start dealing with pain. I think you can look for it online on their website. They're not into pain meds or IV therapy. they take a very common sense, conservative approach.

    A 3 day fibro program isn't going to do squat for your pain. Everyone on this board probably knows everything they'll tell you in the program. Making lifestyle changes, trial and error with drugs - a long-term continued effort is what will ulitimately help you cope with and relieve your pain.

  10. razorqueen

    razorqueen Member

  11. ksp56

    ksp56 Member

    From prior years, I have heard more negative than positive comment about Mayo Clinic. I am giving thought to the FFC in Cleveland.

    JMHO....

    Kim
    [This Message was Edited on 09/24/2005]