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Mayo Clinic's Fibromyalgia Clinic

Posted by @flowerlady in Bones, Joints & Muscles, Apr 6, 2012

Has anyone been to the Fibromyalgia Clinic at Mayo? My 21 year old daughter is scheduled to go in May and we are wondering if anyone found it helpful? My daughters fibro is very severe and so far the medications we have tried have not helped.

Tags: Fibromyalgia

Abelew likes this

Posted by @fearless, May 7, 2012

I haven't but would love to know your take on it. I'm 32 and am having the same issue


Posted by @flowerlady, May 7, 2012

If we get there in a few weeks I will let you know.


Posted by @edriaragosin, May 22, 2012

I was there in January. So worthwhile. Go go go and get into an exercise program. Call if you want more specifics.


Posted by @shanat13, May 24, 2012

I would like to know your opinion of the Fibro Clinic. I was just at Mayo last week (May 15-19) and I will be returning July 18 for the Fibro Clinic, among other tests. I cannot seem to locate much information on the web in regards to the Fibro Program other than the pamphlet they provided me. I would love to have any information anyone would be willing to share, as I have been dealing with severe pain for YEARS and have almost lost hope.
Thank you in advance.


Posted by @flowerlady, Jun 7, 2012

My daughter was scheduled for the Fibro Clinic. We met with the nurses and Dr. Fleming the first morning. Unfortunately she has a very bad reaction to Cymbalta and the withdrawal so they didn't feel she was well enough for the class. The nurses and Dr. Fleming were good to work with. However I still can't comment on the class. I had the same problem trying to find a review. We did do the one hour class at the Education Center at the main clinic. There we did get a copy of the book they use for the class. I don't see any real new ideas that haven't been in other books but we did not benefit from the discussions and the nurses input. So let me know what you think of the clas. Dr. Fleming thinks my daughter could benefit from Cognitive Behavioral Therapy. She has also been referred to the Physical Therapy department to deal with muscle spasms that developed when she was going thru Cymbalta withdrawal. This sure is a frustrating condition to deal with! Good luck


Posted by @shanat13, Jun 7, 2012

I am very sorry that your daughter is not well. I will not say that I know the feeling because everyone is so very different, however many of the same symptoms we may have. May I ask how old your daughter is?
I am 35, and I have been battleing something for as long as I can remember.
I feel as though I have tried every medication there is, and had a reaction of some kind to each one. Savella was the worst for me.
Good luck to your daughter.
Thank you for your reply, I will post once I attend the class.

wonderwoman likes this

Posted by @wonderwoman, Jul 26, 2012

Hi I would like to say ,I also have had bad reactions to the Dr. has had me try over the past 5 yrs.the only thing that helps are pain meds hydrocodone!And most Drs. don't want you to take those??WHY NOT IF IT WORKS AND HELPS?

maxmaximus3 and Abelew like this

Posted by Anonymous-9040b30b, Jun 29, 2012

Could you tell us the title of the book used in the Fibromyalgia Clinic?


Posted by @wonderwoman, Jul 26, 2012

I also had a bad time on the Cymbalta,the withdrawal was awfull!


Posted by @wonderwoman, Jul 26, 2012

I am so sorry for your Daughter,a young person with this illness,how sad.Hydrocodon 7.5 helps me get threw the day,I only take two a day.You must be carefull with Doctor advise!


Posted by @fearless, Jun 6, 2012

Which Mayo has the fibro clinic?


Posted by @flowerlady, Jun 7, 2012

The Rochester Minnesota Clinic has the fibro clinic. It is actually in one of St. Mary's Hospital buildings. My daughter was not well enough to attend the classes. We did see Dr. Fleming at the fibro clinic. He sent us to see some other doctors at the regular clinic. We are still trying to come up with a plan.


Posted by @lee626, Jun 22, 2012

I visited the clinic in December 2003 (it's been awhile, and fortunately I haven't had to return as a patient). After my diagnosis, I did two days of classes. I'm sure they have changed since then, but I found it extremely helpful in helping me assess my life and set up a plan for the changes I needed to make to feel better. At the time, I wasn't sure I actually could be better, and the program also provided me the coping skills to deal with the setbacks and the uncertainty and the pain. It also helped me help my primary physician at home treat me and made me a better advocate for my own health (this is really important. I spent two years sick before Mayo found the answer and put me on a path to better health). With their support and guidance, I am much better and was able to keep my job and have a fairly active life. I know this doesn't happen for everyone. I am fortunate.

Since that time, I have continued to participate in research programs at Mayo and learned more about fibromyalgia and how to live with it. I recommend the clinic and participation in the research. Information is power, and maybe one day they can find a cure.

MaryinKansas likes this

Posted by @useless, Jul 3, 2012

I did the pain rehab clinic at Foridas Mayo Clinic. At first I thought that it was helpful, but after leaving there was no support upon going back home which is out of state

Useless likes this

Posted by @abelew, Sep 4, 2012

I used that med for quite a long time. You end up needing higher and higher strengths of it. It is one of the most effective drugs for pain, however it is one of the MOST ADDICTIVE or one in which your body becomes most dependent on. After so long of taking it I began to have memory problems, no incentive for a "normal" life, and became even more depressed than when the pain was worse without the drug. I no longer take any narcotic drugs. After being off the drugs for over a year I participated in Mayo Clinic/Florida's Pain Rehab Program hoping to learn skills to tolerate the pain. This HELPED!!! The pain does not stop but you learn coping skills. ATTITUDE IS IMPORTANT- you must really want to be able to cope and realize the drugs are just a band-aide and in many ways end up making the pain worse & certainly the situation worse. I didn't think so early on in taking the meds, I just wanted relief from the pain but I finally learned what harm the meds were doing. It is well worth going to a cognitive behavior program- it WILL HELP IF and ONLY IF YOU LET IT!!! ONE MUST BE DETERMINED TO BE BETTER!!!!!
Many blessings wished for those in pain, God is able to comfort and heal you!


Posted by @chbeck769, Feb 24, 2016

I'm scheduled for it on Monday. I was diagnosed back in 1997 and have tried ever med, pt and even thearpy possible but I'm trying to stay positive. Any one had any helpful recommendations for this clinic?


Posted by @edriaragosin, Feb 26, 2016

I attended the Fibromyalgia Clinic in Rochester in January 2012 and it changed my life for the better. It was a full five day week of various tests and information. There was honesty, sharing of information, and sincere compassion.
I had to increase the medication after six months but my rheumatologist is monitoring my condition.
She was pleased with the report from the clinic and the information about the new medication. I had been on Lyrica......bad bad medication. The change to Savella saved me. I think the Mayo Clinic is the place for all who have been diagnosed or think they have Fibro. You will not be sorry.
EMR, nashville, tn.


Posted by @colleenyoung, Feb 26, 2016

Welcome back to Connect @edriaragosin! Hearing from someone who has been there is so helpful for new members like @chbeck769.

Edria, did you only have to visit the clinic once and since been managing your health with your rheumatologist closer to home?


Posted by @edriaragosin, Feb 27, 2016

Colleen, I only attended the week in jan2012. The exercises, medication, and Walking up to 3 miles 4 to 5 times a week My biggest problem is my arthritis. The biofeedback session at Mayo is utilized when the pain inhibits ADLs. I think the biggest problem fibromyalgia presents is depression. I make a conscientious effort to get up and get going. Also, it is important to take a short nap at least a few times each week. Meditation is difficult for me but I can see how it could help. I would love to get back to Rochester for a basic check up. I truly trust the doctors there.EMR, nashville


Posted by @happymom, Feb 27, 2016

Could someone please share titles of books recommended by Mayo Clinic's Fibromyalgia program? Thank you.


Posted by @kelseydm, Feb 27, 2016

Hi @happymom. Welcome to Connect! Here is one book from Mayo Clinic about wellness solutions for fibromyalgia, that you might find helpful Also, here is a pain management e-newsletter you might want to subscribe to- I'm also tagging @edriaragosin, @flowerlady and @lee626 to see if they have any other recommendations.


Posted by @happymom, Feb 27, 2016

Thanks so much. I’ve subscribed to your recommended newsletter and will check out the book, too.


Posted by @pheefoe, Apr 5, 2016

I went through Mayo's Fibromyalgia Clinic about 3+ years ago. My condition has become more chronic, and sometimes overwhelming. I have tried the three FDA approved meds, without much success What is the latest information on this syndrome? Would there be any advantage if I revisited your Clinic? Thank you.


Posted by @angsmith124, Apr 6, 2016

Take a look at low dose naltrexone. It may help you. Blessings to you.

*Angela *


Posted by @colleenyoung, Apr 6, 2016

Welcome to Connect @pheefoe and @angsmith124. I moved your messages to this existing thread where you can connect with others who have been to Mayo's Fibromyalgia Clinic.
Give me a few days to look into your questions.


Posted by @nancywandamoore, Apr 6, 2016

Lyrica and Lexapro taken together helps me.


Posted by @pheefoe, Apr 6, 2016

​Thanks for your info.​


Posted by @1langla, May 23, 2016

No,I haven't been 2 the Mayo clinic for treatment for my Fibromyalgia.I guess it's a famous 1 though.So,I pray they can help her.I've had FM for over 20 yrs.;very hard 2 cope with!Also,2 get adjustments(chiro.)for!But,glad for little relief @ least.That's so sad about your daughter&her pain!I'm so sorry.


Posted by @jharsh, May 24, 2016

I spent 8 days at the Rochester Clinic in 2015. This included a variety of tests, fibro diagnosis and a 2 day class on self management. It was extremely overwhelming. I can tell you that they will never recommend meds as primary treatment and you will absolutely have to manage the condition yourself. This is their approach and truly the best way to be as healthy as possible. I talked to a friend that just went through the class and found it extremely helpful. It is not the end all, rather the tools needed to manage better. I live 7 hours from the clinic and opted to pursue an appointment with complementary and integrative medicine. It was an hour spent getting some advice and also adding to the resources I need going forward. I'm still learning and they are extremely helpful to identify solid options for me to pursue. I'm building a team of professionals around me at home with their direction. I wouldn't hesitate to go to the class and am considering myself.

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