@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.
