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Pepper-oney
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Date Joined Nov 2016
Total Posts : 1
   Posted 12/3/2016 11:26 PM (GMT -6)   
Has anyone been diagnosed through the Mayo clinic? I was wondering if they are better equipped to diagnose and treat Fibro. I live in a poorly populated part of the state and medically the are way behind.

Sherrine
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Date Joined Apr 2005
Total Posts : 17449
   Posted 12/4/2016 7:14 AM (GMT -6)   
Hi, Pepper, and welcome! I wasn't diagnosed at the Mayo Clinic but it certainly would be a fine place to go to. It's one of the top hospitals in the country and I'm sure they have great doctors that help fibro patients...if that is what you have. It's important to have a doctor that not only believes in Fibro but also will run tests to rule out other illnesses that have many of the same symptoms...things like lupus and Lyme disease.

Since you do live in a more rural area. The Clinic would be a fantastic place to head. If you live close to a large city, perhaps you could find a good board certified rheumatologist who believes in Fibro. Believe it or not. There are still some doctors out there in the Dark Ages when it comes to this illness.

Do let us know what you find out because we do care about you. Meanwhile, check out Fibro 101...the first thread on the forum. It has a lot of good info about fibro and you will learn a lot there. Here is another good link for you to see if you "fit" this illness.

umm.edu/health/medical/reports/articles/fibromyalgia

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

wayup
Regular Member


Date Joined Nov 2013
Total Posts : 26
   Posted 12/4/2016 9:41 PM (GMT -6)   
I've not seen anyone sing their praises. We had a thread last year over on the CFS forum. http://www.healingwell.com/community/default.aspx?f=15&m=3284753

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17449
   Posted 12/5/2016 6:51 AM (GMT -6)   
I read the short thread and three out of five people had good experiences at the Mayo Clinic.

You have to realize that fibro and chronic pain syndrome are illness that they don't totally understand. Some doctors think they are the same illness. It sounds like they did the best they could do with these patients. I know my rheumy ran a lot of tests to rule out other illnesses and then made suggestions as to what medication that might help me. That's about all they can do but you should be able to get a good diagnosis at the Mayo Clinic and some help for your pain and that's what you are looking for.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 12/5/2016 6:34:37 AM (GMT-7)


wayup
Regular Member


Date Joined Nov 2013
Total Posts : 26
   Posted 12/6/2016 7:14 PM (GMT -6)   
If you want to try and get diagnosed there, fine, but I'm saying they have this tendency to think this and CFS have a big stress component. I believe stress is not helpful to any patient class, but to treat it as only a consequence of stress, or to wrap treatment around that idea, is completely unproven territory. I don't think cognitive behavioral therapy is the approach that I want. But others may feel differently.
I found the thread I was remembering about Mayo. /www.dailystrength.org/group/chronic-fatigue-syndrome/discussion/mayo-clinic-rochester-mn-very-long

Some people are very into that Gupta/amygdala retraining. I am not. Whatever floats your boat.

I couldn't remember where I saw that thread. As I looked for it I saved some other links for you, thinking you might want them.
I just read some of the intro to this, not the whole thing. From that it sounds like they are still behind in their approach to CFS.

www.healthrising.org/forums/threads/an-mayo-clinic-me-cfs-love-story-and-the-chink-in-their-armor.4050/
From 2 different member of this forum, seen at Mayo very close in time this Sept.

www.fibromyalgiaforums.org/forum/recently-diagnosed/26653-just-left-mayo-clinic-w-fibromyalgia-diagnosis-lost.html

www.fibromyalgiaforums.org/forum/general-discussions-about-fibromyalgia/23295-going-mayo-clinic-less-than-week.html

forums.phoenixrising.me/index.php?threads/central-sensitization-syndrome.41949/page-2

Post Edited (wayup) : 7/4/2017 6:38:40 PM (GMT-6)


wayup
Regular Member


Date Joined Nov 2013
Total Posts : 26
   Posted 12/6/2016 7:58 PM (GMT -6)   
"Simplistic Take on Fibromyalgia from Mayo (What Else is New?)" . www.healthrising.org/forums/threads/simplistic-take-on-fibromyalgia-from-mayo-what-else-is-new.3437/

Post Edited (wayup) : 12/7/2016 12:32:23 AM (GMT-7)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17449
   Posted 12/6/2016 8:17 PM (GMT -6)   
Stress plays a big part in our pain. If I get stressed out, I pay for it for days. So I agree with the Mayo Clinic. It's not the only thing that leads to painthough. They think there is a neurological component because our nerves seem to be affected too. There is a good interview in Fibro 101 with Dr. Clauw that helps explain what they think is going on with fibro at least. Right now doctors are still researching these illnesses and there are different ideas as to the cause of them.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

wayup
Regular Member


Date Joined Nov 2013
Total Posts : 26
   Posted 12/6/2016 11:34 PM (GMT -6)   
Clearly you did not read the threads about Mayo.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17449
   Posted 12/7/2016 7:47 AM (GMT -6)   
You are right. I clearly didn't read all of them since I do have a life outside of HealingWell. I just went and read the link about Mayos simplistic answer to fibro and agree totally with the Mayo Clinic. We tell people on this forum that you need to try to alleviate stress and pace yourself when doing things. Nearly all of us are perfectionists...me included...and I have come to realize that I can still do most everything I want to do but in a different time frame. I HAVE to pace myself.

I have Thanksgiving for my entire family every year and start preparing for it one month in advance. I make my dressing and freeze it. I mop and steam clean my carpeting over a several week period of time. I prepare veggie casseroles and peel potatoes for mashed potatoes the day before. I think you get the picture. Yes, I m tired the next day but also am patting myself on the back for doing all of this.

I'm 69 years old and have dealt with fibro for 29 years...along with numerous other illnesses. I have had a full and enjoyable life in spite of this because I work around this illness. I do gentle exercises, stretching exercises, and pace myself, plus I keep myself as stress free as possible. I keep a positive attitude and take one day at a time. I expect every day to be a good one and if It isn't I can deal with one day. I know I will never be pain-free so I don't worry about that either. I have found things that help keep the pain under control so I do the things I want.

I know this sounds "simplistic" but it sure helps me! There is no magic pill for these illnesses. We do need to come to grips with these illnesses and try things that might help us. On this forum there are quite a few supplements out there that have helped our members. I use vitamin D3, magnesium malate, krill oil, coq10 and folic acid to help with memory. We have a thread about tumeric, curcumin, Curamin, etc. our members use things like that and are doing well.

Be sure to check out the thread about common misconceptions when it comes to Fibromyalgia that I just posted.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 12/7/2016 6:56:36 AM (GMT-7)

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