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I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

Gingergrrl

Senior Member
Messages
16,171
I think the treatment at Mayo is all about just 'putting' everyone they can't 'fix' into a box and handing them tools so they don't keep pestering us is at play.

Thank you @PennyIA for sharing your experience (and also a huge thank you to @Quemist for your continued replies)! I agree with what Penny said above and it seems that Mayo is throwing everyone into one box that they cannot fix or diagnose.

For me this is both lazy and unethical and undoubtedly to charge patients and their insurance companies a fortune (to attend their own Mayo program) while telling patients NOT to see outside doctors for testing or treatment that could actually be of benefit!

Ironically the blood test that turned things around for me were done by Mayo's Lab (and I believe their lab work is accurate and on target) but I do not endorse their treatment protocols. I cannot fathom how someone with pain from cancer or a limb amputation would have the same treatment plan as someone with severe POTS, ME/CFS, MS, or a Mast Cell Disease (I could keep going, but you guys get the point).

Individualized testing and treatment is crucial and patients should never stop looking IMO. Many of us are the "zebras among zebras" with rare things that would never be found without testing and trying experimental or "off label" treatments. I have no problems with CBT or any type of therapy (when done correctly) as a coping tool but not in place of the actual medical treatment.

What Mayo is doing borders on criminal for me but that is just my opinion of course.
 
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Is there evidence of null results or do you mean there just isn't any research on this topic? Interesting to know for stopGET stuff.
There's been several Dutch studies showing null results when actometers were used.

The British quacks used the one-day CPET in some small early studies. The start values were already pretty normal, and most participants were (apparently) psychiatric patients taking psychiatric medications that ME patients usually can't tolerate. They showed a little improvement, about what you'd expect from physically healthy people in an exercise program.
 
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@Quemist, I realize that I’m like a year late to this very long thread, but I too graduated from the Mayo PRC program back in 2016. Looking back, i can’t believe I even made it through the full 3 weeks because I can tell you that It must have purely been because of hope. Boy was I wrong.

A waste of time, and a waste of $34,000, which thankfully was all paid by Blue Cross. I don’t really even remember much of it at this point, just a lot of lectures and a lot of anxiety ridden people sitting around a conference table, wishing they were anywhere else, but there. 2 years later and I am only slightly less painful than I was.

Yes, Mayo does lump everybody they can’t figure out into a CSS patient. I saw 5 Mayo doctors and got about $50k worth of scans, tests and lab work before they labeled me CSS. I never felt like I fit in with any of the people who were at the Mayo program. I have chronic migraines, which somehow has completely screwed up my Central Nervous System, causing unexplained pain in my lower back, sacrum and hamstrings, much like sciatic pain. I cannot sit for long periods of time, like in cars, or say an 8 hr/day Mayo PRC program. Lol. It has completely ruined my life for the past 4 years and it wasn’t until recently that I realized, not my Mayo doctors, that my migraine medicine, all triptons like Maxalt, has been the culprit for my continued spinal pain.

I can’t believe it has taken me 4 years to figure this out and I also can’t believe that my Mayo neurologist never even considered it could be my migraine medicine. I think I’m a pretty fascinating case for any doctor, but apparently not.

Anyway, spending 8 hours a day sitting next to people who have had 32 surgeries and chronic fatigue, lupus, Lyme disease, etc, did make me question “how the hell do I belong with these people?” The one thing I had in common with them was pain, but other than that I am a healthy person. At the time of the program, I was pretty out of shape, so the remedial PT was helpful and a confidence booster for me. That was my only take away though. Unfortunately, I have only managed to get even more deconditioned since then, even after more PT and walking the pool for 4 months last summer.

Chronic pain will take over your life in every way, so I’m not going to condemn Mayo for implementing this program and trying to get through to people who haven’t left their homes, let alone their bed, for years. Believe me, there were some people in my group who would have used every excuse in the book not to stand up from the table we were sitting at and walk into the PT room. I think those people are why they have these strict rules in place.

The doctors running the program are completely numb to hearing the daily complaining for a reason. I went to them on several occasions asking when I should be alarmed by my pain and ask to see another doctor. My Physical therapist was great and very understanding. She told me that If I felt like my pain was worse after the program, that I should go back. I did “fly” through the program, even though I hadn’t slept in like 2 weeks because they took my sleep aids away and all other meds. They tried to take my migraine meds away and I had a mini conniption fit about it and refused. I get as many as 5 migraines a week, so I really didn’t feel like going to the ER on a weekly basis because I didn’t have my meds.

At the end, they do a tox screen again to see if you actually stayed off your pain meds. I hadn’t, but they still told me what a good job I had done. The whole experience just makes me laugh now, looking back. I never stayed in touch with my group, so I couldn’t tell you how successful it was for others. All I learned from it is to be even more diligent about my health care.

I have been back to Mayo many times since the program. I have had many more scans and many more doctor visits and still nothing. I still get that “you have unexplained chronic pain” face every time I go. Since figuring out that it’s my Maxalt and Relpax causing all of this pain, I have only briefly discussed it with my neurologist. He said “stop taking them”. Gee, thanks, why didn’t I think of that? Jesus, I only get like 20-25 migraines a month, but sure, that sounds easy! My only hope is that this new drug Aimovig will be my saving grace.
 
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Lisa108

Senior Member
Messages
675
Hi @Scout77, Cort just wrote about one case, where the Prigden's protocol helped a woman with migraines. Link is here.
Good work that you found out that your 'sciatic' pain is in fact a side-effect of the migraine meds. Awarding you the Sherlock trophy! :trophy:
 
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Hi @Scout77, Cort just wrote about one case, where the Prigden's protocol helped a woman with migraines. Link is here.
Good work that you found out that your 'sciatic' pain is in fact a side-effect of the migraine meds. Awarding you the Sherlock trophy! :trophy:
Thanks @Lisa108 for the article. Very interesting indeed. I too suffer from a myriad of cognitive issues with my migraines, the most concerning being my auras prior to my migraine. Since the chronic pain in my spine and sacrum started 4 years ago, my migraine auras and cognitive function issues have increased as well.

I started getting these very scary “seizure like” auras, which don’t always result in a migraine, but seem to be hormone related during that time of the month. I can’t really explain them well, only to say that it’s like the worst dread washes over me, with horrible thoughts that fly at my brain. I can hear what’s going on around me, but panic always sets in as a response to what my brain is doing and I start to take deep breaths until the terrible stuff passes and it always results in me sobbing for several minutes after it’s over, with uncontrollable teeth chattering.

When it’s over, I can’t remember any of the thoughts, other than the feeling that they were horrible and it takes me awhile to compose myself. Its really scary. My neurologist didn’t seem the least bit interested in this event, other than to ask me to do another MR, which I did.

Other cognitive issues I have are songs that play over and over in my head to the point of me literally screaming inside to try to break them. There are other things as well. Everything is just magnified for me.

I’ve never really considered the fibromyalgia possibility, mostly because my rheumatologist told me she doesn’t think that I have it. I don’t have widespread pain. If I could just go more than a week without taking these damn triptans, I might be able to feel a little less painful.
 
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6
I just went through the two day course. I have mixed emotions and confusion. I’m trying to reconcile the ME/CFS and CSS. I want to read this thread before I comment. Things are emotional. My wife ,an RN, was given a lot of hope in the effectiveness of GRated and cognitive therapy. Reading that it could be harmful if ME/CFS is not CSS is a gut punch.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I just went through the two day course. I have mixed emotions and confusion. I’m trying to reconcile the ME/CFS and CSS. I want to read this thread before I comment. Things are emotional. My wife ,an RN, was given a lot of hope in the effectiveness of GRated and cognitive therapy. Reading that it could be harmful if ME/CFS is not CSS is a gut punch.
I benefited greatly from cardiac rehab, which is designed quite differently. I wrote about it here. I did a 4 month program and it helped hugely with PEM and muscle strength--but it was designed for an ME/CFS/Dysautonomia patient.
 
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6
I benefited greatly from cardiac rehab, which is designed quite differently. I wrote about it here. I did a 4 month program and it helped hugely with PEM and muscle strength--but it was designed for an ME/CFS/Dysautonomia patient.
Thank you
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
What’s the difference between ME/CFS and dysautonomia?
Most ME/CFS patients also have dysautonomia--which is specifically a misfunctioning autonomic nervous system. The autonomic nervous system controls every bodily function that you don't control consciously. There are some patients who only have dysautonomia and not ME/CFS (and vice versa). The symptoms have a lot of cross-over.
 
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Thank you

I’ve had this since 2002 but we’ve only started focusing on this idea since May 2019. So this is still new to me. I think that’s why the central sensitization theory was a gut punch.

i know I’m preaching to the choir, but it is frustrating not having answers and specifics. It lends credibility to self doubt. I know something is wrong but what exactly? Especially when one specialist has a completely different theory than another.
 

wabi-sabi

Senior Member
Messages
1,458
Location
small town midwest
@JMac I went through the 2 day course about two years ago. On the negative side, I believe the amount of medical gaslighting I received there (in just 2 days!) has given me medically induced PTSD. After that experience I would never sign up for the full course and I deeply regret to this day not warning the other people in my group. I comfort myself thinking that I was the only person in my group that "actually" had ME/CFS and desparately hoping the people with fibro or CRPS would not be so badly harmed by CBT/GET. But I still have huge amounts of guilt about not trying to rescue them. At the time I was just too afraid to contradict the Mayo. All of these thoughts/feelings sure sound like PTSD to me.

On the positive side I found @Quemist thread of her experiences around that time- was actually reading them in the Mayo waiting room- and this kept me grounded and sane during the time I was there. I was very grateful to her and PR.

Aside from the whole gaslighting and PTSD issue, I am very concerned (OK angry) about the diagnostic process I received. I self diagnosed with ME/CFS after watching Unrest, so I went in "knowing" what I had (and ready to run away fast if they recommended CBT/GET). I just wanted the Mayo to confirm I didn't have anything even more rare and strange, like some sort of adult onset mito disease. They did nothing of the sort! They diagnosed me sight unseen, based on the history I gave them, with fibro and CF. No legit medical provider would diagnose their patients over email without actually looking at them or testing them. They did no testing to look for any other diseases or conditions (other than autoimmune stuff which my own doc had already ruled out), just told me I had fibro too. The little testing they did was insufficient to diagnose ME/CFS properly and not up to date with current research about the disease. Honestly, I got a more thorough work up at home in my tiny town by my own doc (who was sympathetic even if she didn't know ME/CFS) than I got at the Mayo.

Ah, there's a rant for you. At any rate, I sympathize with your confusion after being to the Mayo's program. Remember that the point of gaslighting is to make you doubt reality. For your wife the RN, you might give her the CDC or IOM report as well as much of the current research mentioned here on PR. I am lucky that my family understands I have a serious physical illness. I don't give them too many medical details because that sort of stuff tends to frighten/upset them, but they support and take care of me even so.
 

Art Vandelay

Senior Member
Messages
470
Location
Australia