Mayo Clinic or Fibro Center

Discussion in 'Fibromyalgia Main Forum' started by azshell, Jan 8, 2006.

  1. azshell

    azshell New Member

    My husband is trying to get me a referral to Mayo Clinic or to one of the fibro centers? Has anyone dealt with these clinics and if so, were they able to help at all?
  2. lenasvn

    lenasvn New Member

    Someone just posted this about the Mayo clinic the other day.

    http://www.arthritissupport.com/chat/forums/message.cfm?id=710828&B=FM#710828

    I am searching for help myself right now, so I don't have any further info, but this post should get you some advice.
  3. lenasvn

    lenasvn New Member

    put "mayo clinic"
    in the search box on this page, I found so much there, I'm sure you can do the same with Fibro Center!
    [This Message was Edited on 01/08/2006]
  4. twerp

    twerp New Member

    I'll chime in here. I went to the Mayo Clinic in Scottsdale and all they did for me was conduct a sleep study....

    Hugs,
    Twerp
  5. springrose22

    springrose22 New Member

    The Mayo is next to useless for CFS & Fibro. Go to an FFC. Marie
  6. ibisgirldc

    ibisgirldc New Member

    I've been treated for my FM at the Mayo Clinic. I don't know on what the person above bases their comment that they're useless for FM... In my experience, at least, I would disagree.

    (I have noticed on this board that some folks expect to be given heavy painkillers as treatment for FM and if that's what you're looking for, then no, you won't get that at Mayo. They're not gonna write you an RX for oxy and send you home.)

    But they have a short clinic that lasts a few days for diagnosis and classes (e.g., you see a team of FM specialists/rheums and anyone else - doctors, et al - that they think you need to see... and then if you have FM, they put you through OT, PT, and educational sessions to get you started as you head home.) If you have the time to stay longer (I think it was 2-4 weeks), they have an intensive pain management clinic that, obviously, is much more in depth. Teaches biofeedback, deals with your medicines, other types of therapies and lifestyle adjustments. That takes a while to get into, unfortunately... I think they make appointments for that 6 mos out or more. (I didn't stay to do this so I can't tell you how good it is... but the fact that they have a 6-mos waiting list should tell you that someone and their doctors value what they do.)

    I'm not suggesting that another FM-based clinic won't serve you just as well or better. If you have something closer or cheaper, do it. But having been to Mayo many times for a number of ailments that no one else could handle, I stand by them. And personally, my FM clinic experience with them was a good one.
    [This Message was Edited on 01/10/2006]
    [This Message was Edited on 01/10/2006]
  7. Sandyz

    Sandyz New Member

    I got diagnosed at the Mayo Clinic and I wasn`t very impressed with them. I saw a Rheumy who more or less said it was caused by stress. I have read enough of other`s people experience there to say most of them don`t think they are very good with Fm?CFS.

    I go to a FFC and they are very good and at least know what they are doing with these diseases. They are treating people with very up to date information. The cost is probably not going to be that much different between the two.
  8. ethel

    ethel New Member

    I went to the Mayo Clinic in Rochester, MN and they confirmed I have fibro also told me I had chronic fatigue. Had a group meeting with others I found very interesting to hear about others with the same problems.

    When I went to court I won. One of the reasons I won is because I went to the Mayo Clinic. I might of had my home town doctors saying the same thing but the judge went by what the Mayo Clinic said.

    Ethel
  9. ibisgirldc

    ibisgirldc New Member

    IMO, Ethel's point is important. Most folks don't go to the Mayo Clinic first. You go there to get a second/third/18th opinion. You go there when whatever you have locally isn't working and the specialists that your locals can send you to have maxed out.

    If you think you have FM but haven't been formally diagnosed or examined by other docs, then a trip to Mayo could be useful but perhaps premature. You may be better off finding a rheum/pain/FM specialist at home or close by. If, however, you have been diagnosed and confirmed by several doctors and need further assistance in determining, for example, how to deal with FM in addition to a myriad of other illnesses (I have a tumor, asthma, had a heart infection, FM, migraines, kidney stones, and too much more to list... most of which popped up for the first time at the same time... and no one on the East Coast could tell me why.), nowhere else compares. They'll see you for your primary complaint and have you checked out from top to bottom based on the other concerns. When you go to the FM clinic, if you're using the facilities correctly, they will be looking at you as a whole and in light of your whole medical history. At the end of your trip, they bring you back to the first doctor to have them explain all fo the findings and to recommend a complete regime for you. And if you already know that you have FM, then you might want to book the pain management clinic ahead of time.

    Obviously, other folks here have had good success at clinics that treat FM alone. That could be a great option for you. IMO, Mayo does a fabulous job of treating multi-illness patients, including those with FM.
    [This Message was Edited on 01/10/2006]
  10. smalone

    smalone New Member

    I went to Rochester MN and they did nothing for me. They basically said my immune system was a little sluggish and I was depressed. Don't go for CFS.
  11. janieb

    janieb New Member

    Do you know if anyone at the Mayo used the protocol used by Dr. R. St. Amand? If not, do you know of any way to find out. We live quite close to Rochester and use it on occassion. We've found them to be very helpful, even if it wasn't what you wanted to hear.

    Mary
  12. buffyr

    buffyr New Member

    I just got back from mayo in rochester and went thru their fibro dept. The doctor there was very good I felt, have had suspected fibro for a couple years but it was nice to finally get a for sure diagnosis. I went thru the 2 day classes and found them to be very helpful. The doctor there told me that chronic fatigue does exist but that it is difficult to separate it from fibro because in a lot of cases the symptoms are similar and there really aren't lab tests for either disease. I've read on here other people who said they didn't feel they got much new info in the 2 day classes, I felt that I learned a lot, but maybe if you've already read every book on fibro out there you wouldn't get much you didn't know. We had one lady in the class who was so negative loud and obnoxious that as soon as a topic was named would say she'd already tried it and it wasn't useful. We wanted to vote her off the island. I think you have to go in with an open mind and be willing to listen and se what of the ideas will work for you. I was very happy with my experience and plan to return to mayo within the next year to go thru the 3 week pain management course.
  13. bobbi507

    bobbi507 New Member

    I went in with a very open mind, I have Fibro very,very, bad and I did beg them for pain meds because I was so miserable I tried to commit suicide. When they would not give me those then I asked them to at least help me get disability because having a job makes my Fibro 100 times worse, they would not do that either. Like the loud obnoxious lady, who said she tried everything she probably has, and for people who have Fibro really bad you do start to become obnoxious because you feel you have been ran over by a Mack truck everyday. I have tried everything and when I say everything I mean it. PT, 30 different meds, heat, cold, exercise. I do not care what anyone says either, exercise makes me feel worse. I have even pushed through the pain like the no-minds at Mayo tell me and end up in bed with a migraine or throwing up, or having an asthma attack. I would not reccommend anyone spend any money to travel here to Rochester, for Mayo Clinic. They are the worst bunch of unempathetic doctors that I have ever seen exist.
    I am sure I will get bashed because of this post, because on this forum have bashed me before, because I get so angry, but my life is over as far as I am concerned and there is not one person standing behind me either. Even fellow people with Fibro are mean to me. I have had it for many, many years. Before my flare-ups were few and far in between but now I am disabled every single day! Every day!
    For those who have had help from Mayo maybe you could give me the name of the doctor, so I can give that crummy clinic another chance?
  14. marw

    marw New Member

    To bobbi, and others, too....donot give up! I, too have very bad Fibro, and like you, bobbi, I have tried so very many things that do not work. I think this experimenting is necessary to find what does work for you, because howevermuch pain we are in, each of us responds differently to the remedies. I cannot tell you how very many pain meds and other meds I have tried that gave me horrible side effects ordidn't work at all. By trial and error I found some that do. My Internal Medicine doctr is very supportive as well as my Rheumatologist. Thefirst thing to do is find a doctor who will support your efforts. You don't have to go to Mayo to do this.

    For example, I could not use the Fentyl patch, even at its lowest dose, but I can take Vicodin. I could not take antidepressents, but I cn take Ativan (it makes me a little sleepy so I break the pills inhalf.)

    For exercise, I went from one PT to another until I found a good one....there is a lot of difference in them. GEntle exercise or water exercise is bestuntil you work your way into it. I'm sure I'm telling you stuff you already know, so forgive me for that.

    The point is do not give up! If you do, the pain gets worse! I know, I've done that.

    As for Mayo, based on what I read above, it sounds like it is good for "beginners" who have not researched this disease or who have not experimented with ways to control it. It does not sound worthwhile to me for people who already know this stuff.

    One more thing, my Internal doctor did not have a good experience when he took a relative there. I think it depends on what you expect to get out of it. On the other hand, a friend with MS got a great deal of help. Personally, I don't think I would use it. I found it more helpful to search the Internet for a list of doctors that specialize in FM.

    Good luck.
    Margaret

    You can find lists of doctors through immunesupport.com or maybe by typing "Fibromyalgia Good Doctor List" into the address bar. Another place to get a list is from O.C.P.M. (sorry, I forgot what this stands for!)

    Another thing I found helpful are the articles by Deborah A. Barrett. Just type her name in the address bar. Or use google and put Barrett + Fibromyalgia.


    [This Message was Edited on 02/02/2006]
  15. bobbi507

    bobbi507 New Member

    I know I come off as a mad mean person and a lot of times I am. I am just so fed up with arguing with the same government that is suppose to protect its citizens and the doctors who are suppose make you feel better. I got child support hounding me. I cannot even drive 1 mile but I have to grit my teeth and drive 100 miles and explain in front of a room full of strange people why I am a fellow deadbeat and cannot pay child support, because i cannot work. I thought medical records were suppose to be private, ha! The same guy who wants the child support is stalking me on these message boards and downloading everything I write in an attempt to show the judge in wisconsin i am trying to pull a "scam" because I ask other people for advice on how to speed up the SSDI process. That is a whole other story. Fighting with them jerks. I had to quit 2 jobs after one month. Then was forced to go back cause of child support, I had to keep missing work and taking medical leaves until they told me not to come back. I have been trying to train for a less stressful job but there really is no job I can do considering I cannot even take a dump without getting a Migraine. I cannot even go grocery shopping anymore, my legs feel like cement after 20 minutes in the store. Training was a joke. I tried to take 2 classes at the college last quarter, started missing class towards the end, took one class this quarter and had to withdraw cause I could not handle 1, 2 hour class twice a week. I know SSDI is going to turn me down this first time, and I am gonna flip! So that is why I am so grouchy!
  16. dancingstar

    dancingstar New Member

    I hear you! You know, I do exercise, but it's a vanity issue. I'm determined to not fall apart before someone heals me, but sometimes it's so very hard to do. You are right, my friend; it does hurt the day after -- or the second day after exercising, so badly that it is outrageous!!! No sane person would really do this except, I guess, well, sometimes if I exercise just a little bit in the middle of the pain, it does ease up for a while.

    One thing that has helped the headaches/neckaches after exercising thing is I had the trigger point injections at the L.A. FFC. I'm surprised at how well it worked, but I haven't had one after-exercise headache since the shots.

    Anyway, I feel more blessed than I can even begin to say that my doctors have given me drugs that take away the pain when I hurt so badly that I want to barf but can't leave the sofa or the bed or wherever I am to get up and go to the bathroom cause I'm in too much pain to move.

    The idea that the Mayo Clinic boycotts pain meds is barbaric. What is up with that? I couldn't get through life when the pain is that bad if there was nothing to block it. I couldn't run my business or think clearly. What are these people thinking? If pain meds are not for taking away pain, what are they for? People waiting to die?
    Are they trying to suggest that the pain is in our heads?

    If there is something physically wrong with us, then help us deal with the pain. It's like they are saying that it really isn't physical; you can think the pain away. That's a bunch of crap! It sounds like they really don't know much about the nature of FM/CFS. The Mayo Clinic docs need to go to the FFC doctors and have them teach the Mayo docs about FM/CFS. It would be a great service to their patients. Now, I'm not saying the soothing music, yoga, etc. isn't helpful...but it does not take away severe pain.

    ...stepping down from podium...timidly walking back to her chair....
  17. dancingstar

    dancingstar New Member

    I wrote that first one before you wrote the second one. I'm so very sorry that you're going through so much. Right now, it's likely that you can't work, really. The domestic thing is so stressful that it is only making you more sick. I so hope things lighten up over there.

    Hugs,
    Bebe
  18. hopeful4

    hopeful4 New Member

    I have no experience with the Mayo Clinic, but it sounds like lots of others here do.

    After 5 yrs. of CFIDS diagnosis, I finally got help at the FFC, where they uncovered many underlying causes, and the main culprit, lyme disease. No other Dr. had tested for it or even mentioned it in 5 years of debilitating illness. I am now being treated and have hope in recovery.

    If you do a search in the box above for FFC you can read many people's stories there. Or go to fibroandfatigue dot com.

    Good luck!
    Hopeful4