Mayo clinic for fibro?

Discussion in 'Fibromyalgia Main Forum' started by mjj3, Aug 14, 2012.

  1. mjj3

    mjj3 New Member

    Has anyone been to Mayo clinic's fibromyalgia/chronic fatigue clinic and did they find it to be helpful? I have been debating going and my parents have been encouraging me to go since they found out someone in our area went up there and they said how wonderful it was and how much useful info they received. I've had fibro for 4 yrs now suspect chronic fatigue also and have 3 kids-7,9 and 11 our youngest has aspergers and with working part-time, running kids to afterschool activities and our youngest to his therapy appointments I can just about keep my head above water. My husband will support my decision either way, but it will be difficult for him to deal with the kids since i'd need to be gone 5 days and our youngest can be a major trial. I have made the appointment (it's in 2 weeks), but now that I found out it's for 5 days and not 2 days my "mommy guilt" says that I need to put this on the back-burner again until the kids are older, trying to weigh my positives and negatives about going any info appreciated.
  2. Nikki

    Nikki Member

    I'm so sorry you were dx'd at such a young age. I was 58 when actually dx'd; but, had it several yrs. prior (I'm almost 67 now).
    I'm also wondering whether a major clinic would be helpful . . . Mayo Clinic, Cleveland Clinic, Johns Hopkins.I asked the board just recently the same question.

    My husband is actually pushing me to go; but, I'm wondering whether it would help . . . guess I have nothing to lose . . . but, I'm somewhat afraid that my "last resort" will be an utter failure. Right now, I still have that "last resort." (Don't know whether that makes sense.)
    Time, money . . . none of that matters now . . . I'm very blessed to have the time, and we have good insurance.

    I'm hoping someone on this board can respond. I'm so glad you asked, too.

    Soft Hugs,
    Sharon[This Message was Edited on 08/14/2012]
    [This Message was Edited on 08/14/2012]
    [This Message was Edited on 08/14/2012]
    [This Message was Edited on 08/14/2012]
  3. Jittle

    Jittle Member


    I know it will be hard on you and your family, but in the long run the Mayo clinic may be able to help you. If you run yourself down you may not be able to help your family as much as you do now.
    One question, are there any grandparents near by that could help?

    One thing I have learned.....when I can take care of myself first. I do what I have to, and say NO a lot now. Here, like this, my mother-in-law contracted
    C-Diff while in the hospital for surgery. i waited until they diagnosed it, and she was on antibotics...Then I went to her house and sanitized and cleaned it from top to bottom. This was something I told myself I had to do. Then I took the next two days to myself to relax and rest: Everyting was on hold until I was feeling better.

    As a mother of three I assume you probably don't have the option to say NO and put things on hold. But sometimes, i have learned, you may have to be a little selfish when it comes to FM. Like I said,, it may benfit you and your family more in the long run if you go now.

    If you do go, I would love to know what they do as far as testing, meds, etc... when you come back.

    Good Luck, and feel better
  4. sunflowergirl

    sunflowergirl Well-Known Member

    She tells me they did nothing to help her. I know it's expensive. Does your insurance pay for it? If they do, and it will put your mind to rest, then do it. BUT.....don't expect miracles. I've been to two rheumatologists (one even teaches at a local college) and all they wanted to do was put me on either cymbalta (tried it) or lyrica (tried that too). I've also gone thru water therapy....didn't work.

    STRESS does a huge # on us. With what you have to deal with on a daily basis, I'm sure you're in a huge amount of suffering. I'm very sorry for this. Asbergers is hard to deal with. I have a friend whose grandson has this. He's luckier than most kids because his dad is a doctor and has been able to get him help. But it's been a long road for them.

    Nikki: I'm 67 now and have probably had this for at least 20 years. Doctors told me less than nothing about it and everything I read I learned from this board or elsewhere. I've been coming here for about 9 years. I've read a ton on myofascial pain syndrome......this is connected to FM and some doctors think it's the same thing. No one knows for sure.

    I mention this because I've been going thru a 3 week plus phase of this. One minute the pain is about a 3 and 5 min. later it's zoomed to 9 or l0. (I think I must have a little snag on the myofascial covering!) The only thing that seems to help cut the pain for me is tramadol, muscle rubs and moist heat. I have been taking grape seed extract for about 8 weeks now.....thanks Jam......and honestly I still get fatigued but NOT the AWFUL fatigue like before.

    I also take lemon balm, peaceful nights (from ProHealth) melatonin, 5 HTP for sleep at night. I TRULY believe FM is a sleep disorder. Bad sleep equals bad day.
  5. spacee

    spacee Member

    To see what they say about Fibro/CFS. That might give you a clue as to what
    they think about the illnesses.

    My cousin went a number of years ago. She is a doc's daughter so treated as
    one of the "gods". But they still blew her off.

    Hope they have seen the light on it. Maybe so since they have a clinic??

  6. kbak

    kbak Member

    Save your money. The people I know that have gone have been sorely disappointed. I even went to a seminar they gave in a town next to mine. I was disappointed with their presentation at the seminar.

    One thing they told us was when you go for fibro treatment, they talk to the spouse and they tell them not to give the affected person a lot of attention if their being negative about their condition, like if you were complaining about how much pain you were in. They wanted them to only "reward" positive thinking.

    When I asked about the terrible insomnia we have, they really didn't have any good suggestions. Soooo, I was massively uninpressed! They spent a lot of time on how to clean your house using things that made cleaning easier for you. Woopie!

    The people that seem to be doing really well are the ones that find a decent doc that's willing to work with them. I just spent a lot of time online reading everything about our problem and what treatments seem to make a difference.

    One thing you have to do is change your diet if you haven't already. Then I tried several different drugs and doseages till I found those that helped me the most.

    Take care,
  7. misskoji

    misskoji Member

    I'm sorry to be the negative nelly here, but Mayo, with regard to our conditions, SUCK!!!!

    I can't recall where at the moment, but I recently read a review of one patient's experience there. HORRID. She was basically on lockdown, unable to leave willingly, had to stay the full time. Forced to excersize, dismissed and even reprehended for expressing her pain levels and apprehensions about how excersize would make her worse.

    Mayo has proven itself an innovative medical source for many things. However, they fall very far from short with our illnesses.

    A quote of a Mayo doctor that infuriates patients, and should give you an idea of how they "treat" our illnesses

    The description given at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ” (In: Psychological Disorders in General Medical Settings, ed: Sartorius et al; Hogrefe & Huber, 1990)

    I wish you the best, and I hope you can find someone who will treat you with respect.

    healthy-me likes this.
  8. mbofov

    mbofov Active Member

    Here's what their website says about treatment for CFS:
    The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines psychological counseling with a gentle exercise program (they refer to graded exercise)

    I wouldn't go. If someone has CFS, graded exercise is of no benefit and can actually harm the patient. They say nothing about supporting the mitochondria or post-exertional "malaise", which has been well-documented by the Pacific Fatigue Lab at the University of the Pacific at Stockton.

    If I were you, I would look for a doctor at, which is a website for doctors of integrative medicine - these seem to be almost hte only ones with any knowledge about CFS and nutrition and diet and supplements, combined with traditional medicine as needed.

    [This Message was Edited on 08/16/2012]
    healthy-me likes this.
  9. simpsons

    simpsons Member

    this research paper was quoted as being by someone from the mayo clinic Dr Michael Joyner, from the Mayo Clinic in Minnesota, made the case in the latest edition of The Journal of Physiology.

    it describes pots in passing saying they need to exercise, WRONG it makes pots worse some can' even sit upright. very dangerous.

    if you really wanted to see a good dr how about dr cheney? sure others can give you a good dr idea but i have to agree teh mayo looks bad.

    i also use lemon balm, its good for sleep they say. also known as melissa. it has many properties, good for treating viral infections in the brain i was told. do a little research on finding a good medical herbalist. or study dr myhills treatments they are shown free on her website in uk.

    always get a check done by medical herbalist or check with your dr or research well interactions with other drugs and other medical conditions.

    herbs can def interact with meds. st johns wort for eg not to be mixed with prozac. that said herbs i have found can be very helpful. i combine vits with herbs. melissa is good herb for the brain antiviral and good for the cns i am told hawthorn licquirice root (care if you have high blood pressure) supports my adrenals. my herbalist changes the herbs sometimes to treat symptoms most troubling at the time.

    see the thread on mitochondria rich and ian have some good advice on vits there too.

    i use a standard of vit b complex with niacinamide in it. vit c q10 and magnesium b12 and a large dose of fish oils every day i add a combination of herbs recommended by herbalist.

    i use hawthorn to treat chest pain and strengthen the heart muscle. there was a thread long time ago lots of people found it useful and worked well.

    siberian ginseng is an adaptagen which is very useful for me for energy and balancing the systems. though it needs again careful checking and a low dose of all herbs to start with was my policy. i started just one at a time and gradually increased them. i sometimes add ltyrosine too

    you can be allergic to anything so slowly slowly, especially with the sensitive me prone to reactions in my motto

    removal of chemicals from your house can really help they block the mitochondrial function. i didn't realize how many were making me ill til i got rid of them.

    diet can help some too. dr myhill advises a stone age diet, so no processs foods and no chemicals is the basics of that one. no microwaving either

    wheat really causes me muscle pain and lettice leaves can be used as sandwhich cover. i tried it at local cafe it was lovely, v fresh. i don't have celiac but cutting out wheat really helps me. dairy too. i have stomach issues with this dx

    on the stomach dr chia did good research on entro viral infections found in the stomach. i use a high dose of good bacteria tablets which i find helps too

    i guess we are all different and what works for one may not work for another. hope this gives you a few things to think about. don't spend all your savings though it is a slow processs

    even vits need to be started slowly as i said you can be allergies to anything.

    i usually tried to read up

  10. somelife

    somelife Member

    I ordered the DVD on fibro from Mayo, it covers a lot of things like: Understanding your condition, Eat well to feel well, Soothing Therapies (includes gentle restorative yoga and stress-relieving meditation), and the 52-page "My Stress Solution" booklet.

    It was around $19.99. Lots of info.

    Just a thought.

    If you go, I pray it will help you. Sounds like you could definately use some stress relief.

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