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Flower Lady
@flowerlady

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Joined: Apr 06, 2012

Mayo Clinic's Fibromyalgia Clinic

Posted by @flowerlady, 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.

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fearless
@fearless

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Joined: May 07, 2012
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


Flower Lady
@flowerlady

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Posted by @flowerlady, May 7, 2012

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


edria ragosin
@edriaragosin

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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.
Edria


ShanaT13
@shanat13

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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.


Flower Lady
@flowerlady

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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


ShanaT13
@shanat13

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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.

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Happy Mom
@happymom

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Posted by @happymom, Jun 29, 2012

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


wonderwoman
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Posted by @wonderwoman, Jul 26, 2012

Hi I would like to say ,I also have had bad reactions to the meds.my 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?


wonderwoman
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Posted by @wonderwoman, Jul 26, 2012

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


wonderwoman
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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!


fearless
@fearless

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Posted by @fearless, Jun 6, 2012

Which Mayo has the fibro clinic?


Flower Lady
@flowerlady

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Joined: Apr 06, 2012
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.


Lee626
@lee626

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Joined: Jun 22, 2012
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.

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Useless
@useless

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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

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Abelew
@abelew

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Joined: Sep 04, 2012
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!

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