Mayo Fibromyalgia Treatment Progam

Discussion in 'Fibromyalgia Main Forum' started by wolflake46, Jun 7, 2003.

  1. wolflake46

    wolflake46 New Member

    I just got back from a 1 1/2 day FM treatment program at the Mayo Clinic in Rochester, Mn. To say that I was slightly disappointed would be an understatement. I went to the Clinic to get something for my pain and sleep as the doctors seem to think that because I am so sleep deprived that alot of my pain from FM would be lessoned if I got the sleep I needed.
    I was told along with others who participated in the program that there are 3 types of pain.
    Acute pain- such as after you break you leg and they will give you drugs for that pain
    Terminal Pain - which they will give you drugs for to make you comfortable until you die
    and -- Chronic pain- which they do not believe in giving you drugs for. Go figure!
    The treatment options that they dwell on are self-management strategies. Stress management, exercise, sleep hygiene, socialization and relaxation.
    I went to the Mayo Clinic hoping to get something for the pain and sleep. I walked away with nothing. I am so mad, along with some of the other who attended. One of the ladies even started to cry when she found out she wasn't going to get anything for pain.
    All I feel that I got out of it was a few booklets and leaflet to look through and a book called Good Living with Fibromyalgia.
    I spent a total of 5 days at the clinic and all I have to show for it is a big doctors bill. My husband said I told you it was a waste of time, not to mention I had to take 5 days off work, which I really can't afford. Oh, by the way, one of the quotes in my booklet says "Pain is inevitable, but misery is optional" how ironic is that.

    Diane
  2. Princessraye

    Princessraye New Member

    Hi
    Sorry this was so disappointing. My mom and I always said if we ever won money we would go to the Mayo clinic while most others would go on a vacation.
    I have read many people have been saddened by the Mayo and Cleveland clinics attitude toward our problems.
    Sorry that you had to go through this.
    If I win big money now , I will just go on a vacation !

  3. wolflake46

    wolflake46 New Member

    I agree I don't think I would waste your money. I think they believe that all of us with FM have a lot of self pity, but if normals don't know what we go through and can't sympathize with our pain what else can we do.

    Diane
  4. RedB

    RedB New Member

    and I still believe that it is the best place to go for a diagnosis because of the shortened amount of time that it takes there.

    However, they basically treat FMers pretty much the same way that other doctors do, so I am aware that their treatment program stinks big time. I would never recommend them for that.

    Kathy
  5. joannie1

    joannie1 New Member

    Diane I know how you feel exactly about Mayo. However I had to attend there "3 week" prgram.. It was the biggest BS clinic I have ever seen in my life. I have nothing at all good to say about Mayo clinic. I am truly sorry you had to go through this experience and waste of money.
    Take care,
    Joannie
  6. wolflake46

    wolflake46 New Member

    Joannie1,

    Thank you for your response. I too heard about the 3 week program at the clinic, there would be no way I would be able to be gone for 3 weeks. I'm sorry that you too did not benefit from your program.

    Diane
    [This Message was Edited on 06/08/2003]
  7. Applyn59

    Applyn59 New Member

    That is interesting to hear. Sorry it didn't help.
    Did they give you tests and diagnose you? At one
    point in time I was going to go to Mayo in Fl because
    my brother lives there. He told them all of my health
    problems and they were going to set me up with
    so many different drs and tests over a two week
    period of time. I ended up cancelling due to
    unexpected gallbladder surgery. I reset the date
    and had to cancel becaue the gb surgery did a
    huge number on me!

    To tell you the truth, I really think it sounds so overwhelming. I have heard it is huge and on
    several floors and you have to spend long days
    there. I can't do much for two hours let alone
    all day. I think the flight and everything else
    there would just make me worse by the time
    I was done. I did want to explore it though. It's
    funny, I mentioned it to several drs that I saw
    for various reasons. Not one of them thought
    it was a good idea. I thought maybe they
    would think it would be but they mostly thought
    it was just too much testing. I don't know.
    If I ever get well enough to visit my brother,
    I may look into it.

    You sound like it was a seminar, rather than
    dr. consultation. Is that true??

    My brother had a physical there last year. I
    don't know what he said about it. I can't remember.
    I have a video from Mayo that explains everything.
    Never got a chance to look at it.

    Lynn
  8. dolsgirl

    dolsgirl New Member

    doesn't have fms or any chronic type of pain. May I wish them a month of walking in our shoes before they so stupidly would publish something like that. And to think it came from the Mayo Clinic too! Bah humbug to them! dolsgirl
  9. lilwren

    lilwren New Member

    I didn't get past the first doctor appointment. The arrogant jerk told me I was crazy and a drug addict!! I told him to go screw himself and walked out. What a joke! I waited an entire year for that!

    They hype it up and make it sound like you'll see all these doctors the week you go. NOT!!!! The week I was staying in town they could only get me scheduled for two docs. They had the remainder of the appointments spread out for months. My husband and I spent money on an efficiency for a week and dragged our dogs along and it was reeeally hard AND THEN they told me it wouldn't all be done in a week. It stressed me out so much I tried to put a gun to my head but my husband stopped me. If I had an attorney on retainer I'd sue them! That has got to be the worst experience I've had with this DD!!!!

    Save your time and money and find a good holistic doctor who will take the time to help you.

    Sharon L
  10. Applyn59

    Applyn59 New Member

    Sorry to hear that. I think it sounds incredibly difficult to do for those of us who are really bad off.

    I had talked to others who didn't think it was so bad.
    I think it would almost kill me to do it at this point.
    I haven't thought about it too much since I cancelled
    the two appts I had.

    My brother lives nearby so I would have stayed with
    him for a long time I am sure. The trip a lone would
    be difficult.

    I am in the process of looking into a holistic dr.
    right now.

    Lynn
  11. Sandyz

    Sandyz New Member

    I got diagnosed there 13 yrs ago. Sorry to hear they didn`t have a better program for Fm. You`d think by now they would. Things haven`t changed much at all since I went.

    I remember the rheumy I went to then telling me I was depressed and needed to deal with my problems to get well.
    [This Message was Edited on 06/08/2003]
  12. horsegal

    horsegal New Member

    Funny that you wrote this....no, funny, because I just visited the Mayo site a couple of days ago and read how they treat FMS. I was disappointed just reading it, let alone doing/living it. I remember that quote in their site. I was shocked that the "mecca" of medical wonders was so far behind times and SO uncaring!
    Horsegal
  13. lmlynley

    lmlynley New Member

    If you need pain meds, which many so-called fibromyalgia clinics do not offer, try to find a GP who will either prescribe meds or write you an Rx for a pain clinic. It is the only way to get vicodin or other pain meds. I did nine weeks of physical therapy and fibro clinics as an outpatient at Cedars Sinai Rehabilitation Centre in Los Angeles and it was much the same. However, they would write me scripts for ANYTHING other than narcotic meds. This is, of course, absurd but that's the way in which these large institutions operate. There are a few clinics in the US that do have pain clinics on premises. I suggest surfing Google and e-mailing various clinics about their pain meds policies BEFORE you commit to their programme. If you have the funds (I do not) I would look outside of the US to Europe, Canada and Australia. They are much more advanced than we are in these, and other, matters.

    Warm Regards,
    Lauren M. Lynley
  14. idiotsinc

    idiotsinc New Member

    I think sometimes we limit our chances for relief because we have issues with the things we don't want to hear. Like FMS isn't an illness, it's a symptom. Or it's "all in your head". Unfortunately research is pointing more and more to that fact. It's a neurological problem that affects sleep, which means your muscles don't heal properly, causing the pain. All the other things they find are symptoms and caused by the lack of sleep and the stress caused by it. Until you accept at least the possibility that it is, you'll have trouble finding relief. Even then it's a slow process and you have to face the fact you may never be completely without pain. You should worry first about being better able to cope with life and FMS. I've been treating my ADHD, quit drinking, am working on programs to improve my sleep and getting into shape. My shrink says it can take many months, even years, especially the sleep part. I still have pain but I handle things a lot better than before and am living life again. My family has been amazed at the difference. Instead of dismissing outright what the doctors say do research and find out why they say it. Have to go back to work now.

    Bob