Mayo Clinic Fibro Program Question

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by shelby_725, Mar 16, 2004.

  1. shelby_725

    shelby_725 New Member

    Hello to all~

    I was wondering if anyone has gone through Mayo Clinic's three week fibro pain program? If so did you get any help there and was it worth the three weeks up there? I am currently signed up, but scared because I don't know what to expect. I was wondering if anyone could by telling me what they do during the three weeks and if it was helpful or didn't help at all?

    Thanks,
    Shelby
  2. Jean C.

    Jean C. New Member

    Hi I have not been to Mayo but would be interested in hearing from you after your study.

    Good luck and take care. Jean
  3. matthewson

    matthewson New Member

    went through the program and found that it was not that good, if I remember correctly. Try doing a search for Mayo Clinic and see if you can find it. Sally
  4. DDD

    DDD New Member

    Yes, I did go. I was there for two weeks and was very disappointed. I think it might be worthwhile for someone who is newly diagnosed and knows nothing about Fibromyalgia. In my case, I really knew what I had and went there for validation, which they did. By the time I was there, I had read many books and researched Fibromyalgia online. I felt that I was fairly educated regarding the syndrome so the information they provided was neither new to me or particularly helpful.

    Before going through the Fibromyalgia program, I was first sent from doctor to doctor within Mayo for evaluation. What stood out most for me was the fact that I had an appointment with a Rhumatologist in Mayo, who was not affiliated with the separate Fibro program. He told me that he did not believe in Fibro and thought it was just a bunch of symptoms and most likely due to stress. When I asked him if he was aware of the Fibro program within Mayo (right under his nose) he just kind of blew it off. I got up and walked out right after that.

    I also spoke with a psychiatrist who was not affiliated with the Fibro program. He immediately blamed it all on depression and would not even discuss other options. He more or less insinuated that people with fibro were all mental cases. Not a good visit.

    The only good that came from my visit was that they ruled out other diseases and confirmed the fact that I had ALL of the tender points and validated what I already knew. I had Fibo. For many who have gone from doctor to doctor with no validation of their pain and symptoms, sometimes validation is enough. It's nice to know that what we have is real. Just my opinion.
    <br>[<i>This Message was Edited on 03/17/2004</i>]
  5. shelby_725

    shelby_725 New Member

    Thanks to all who replied. DDD~ did you go to the two day fibro program where they just give you info and a book and crap? Sounds like what I already went through. This is different though. This is a three week program at the Pain Rehab center. The work with you through group sessions, physical therapy and more. It is five days a week for 15-18 days.

    Thanks again to all who replied. I enjoy the feedback very much.

    Shelby
  6. karyssa

    karyssa New Member

    Hi Shelby,

    I was diagnosed last year at Mayo Clinic for FMS and CFS. I can relate to the person who responded to you and said that she had been to a dr. there at Mayo's who did not believe in FMS.

    I was sent there to see a Neurologist and he basically told me that I was wasting his time and there were more patients waiting to see him that had "real" problems.

    I demanded to be referred to a Rheumatologist there at the clinic. I already knew that they had a Fibro Tx Program from research I had done on my own. This DR did not have a clue about any Fibro TX program, he said there was no such thing there until I insisted that he check it out. Well he got on the computer and found what I was referring to.

    I was diagnosed the following day by the rheumatologist and sent thru the 2 day clinic. I know someone else mentioned that this did not help them at all---but I was totally impressed by the Dr's and Nurses who conducted that clinic. Since I was newly diagnosed I learned alot and so did my husband. I can see how this could be considered mundane to someone who has had the disease for a long time, but for me it was wonderful just to have validation, information and suggestions on making my life more bearable!!

    There is a 3 week program there and we were told it is very intense. They do bio-feedback therapy along with many other things. When I was there in February 03 they were just starting a new study with Fibro and Accupuncture and were taking volunteers for a 6 month study at that time. I am sure you can look them up on the web and find out exactly what there clinic focuses on and if any studies are currently being done.

    I hope this answers some of you questions---As I have stated before there are good Dr's and bad Dr's anywhere you go even Mayo Clinic!!! But the ones associated with the Fibro Clinic are WONDERFUL!!!!!!!!!!!!!!

    Keep smiling
    Karyssa
  7. twood

    twood New Member

    Hi, I went to Mayo in Oct. 2003. I had been through 2 surgeries last year and after the cervical fusion in my neck I waited 6 months and couldn't just sit around anymore not knowing if this was really FM, or something else. I had already been told it was Fibro. but I did not tell them. I wanted them to do all the testing and tell me. I spent 3 weeks there and about 7000.00 to be told to get off the pain meds and exercise. They treat chronic pain with exercise, diet, and drugs for sleep and neurontin. That is great if it works, and I do feel better when I exercise. Also, they educate you about how to take you meds. I do wait till I am really hurting now instead of just taking a pill, or take a walk, bath, relax. They give you options to try instead of meds. When I learned what tylenol does to your liver over 5 years, believe me I cut back. I would recommed it if you are going to use what you learn after you return home. Basically they are teaching a lifestyle change which I needed and basically can help most FM. patients. Wish you all the best they really do know what their talking about it's just hard to do what they say everyday. Teri
  8. shelby_725

    shelby_725 New Member

  9. fllfibro2003

    fllfibro2003 New Member

    Hi - My "EX" Rheumie tried to get me in at the Mayo Clinic in Jacksonville Florida and the clinic called me later that afternoon and told me they didn't have anyone there that specialized in FMS and it would be a waste of time for me to travel to Jax for nothing.

    I would be interested in which Mayo Clinics have this program.

    Thanks
    FLlfibro
  10. shelby_725

    shelby_725 New Member

    I am going to the Mayo Clinic in Rochester MN. The center that I am going to is at the Saint Mary's Hospital, which is a connection of Mayo Clinic. If you are interested in the clinic there I have the numbers of the pain rehab clinic and the number and name of the FM specialist that I saw. You can e-mail me at shelbyjohnston@hotmail.com if you want to and I will transfer that info to anyone who is interested.

    Shelby
  11. shelby_725

    shelby_725 New Member

    Patri~

    Sorry to hear you had a bad experiance. Before this one, which was good, I had a terrible experiance up there. I had to see a pediatrics doctor because I was 17 when I first went up there. I was having all of these fainting spells and I couldn't get a grasp on what was happening to me. So I was refered up there. They did a tilt table test, and then my doctor told me that it was all in my head and that I should see a shrink...that pissed me off so bad because I had to go another 2 years without knowing what was wrong with me in that aspect. Then this time around I had another tilt table test and the doctor told me I had NCS and POTS. He looked up my other test there and said that the doctor should have been able to figure it out from the tests he ran, but he didn't. So I guess that it is the doctor that you see sometimes.

    Shelby
  12. s447300

    s447300 New Member

    I would not recommend this to anyone, it was a complete &quot;expensive&quot; waste of time! I went to their adult PRC 4 mos. ago &amp; was very disappointed! It's a very long 3 wk program (actually 4 wks, if you include their enormous amount of paperwork required). Sitting in classrooms 7 hours a day, with only 1 hour of PT per day is painful. Mostly, the regimented classroom &quot;learning&quot; is repetitious &amp; the entire program is NOT flexible at all (6 people had dropped out). &lt;BR&gt;
    &lt;BR&gt;
    The entire program's? solution to ending your pain is: deep breathing and relaxation?!