I was actually diagnosed in Jacksonville in 2023, during an evaluation at the EDS Clinic. They assess everyone for fibromyalgia.

In Rochester, in 2017 (?), they diagnosed me with what was then called “chronic pain syndrome,” now known as central sensitization syndrome or nociplastic pain.

So I have experience being treated for fibromyalgia at Rochester specifically. But I can say that in my experience, both campuses view fibromyalgia and central sensitization as related or even two sides of the same coin. My JAX provider said, “Fibromyalgia is the pain component of central sensitivity.”

At least in my experience, they approach both the same way. I can’t say for certain, but I’d expect the approach to fibromyalgia in Rochester to be the same or very similar to what I experienced in Jacksonville, which was the same as what I experienced in Rochester, but for central sensitization.

I know others have had positive experiences, but the overall prevailing culture of the “Mayo approach” to chronic pain wasn’t a good fit for me. It’s not something I really recommend to others except for specific circumstances. I’ve written this elsewhere, but it feels too rigid and doesn’t seem to account well for different presentations of chronic pain and central sensitization. And the providers I interacted with did not seem to have an understanding of post-exertion malaise, which can be dangerous.

My experience in both places had a heavy emphasis on “self management and lifestyle changes.” They take a pain neuroscience approach, emphasizing that pain is a message the brain sends out on the basis of how it’s interpreting what’s going on in or around your body. We can change that pain experience by calming down a brain that’s on high alert. All of that is true, and self-management it’s important, but that approach felt very one-sided. The approach to pacing exercise frustrated me most; it was too aggressive for me and didn’t acknowledge different presentations of chronic pain or post-exertion symptoms, which can be dangerous. And I saw PTs who are supposed to be the experts.

I feel conflicted about it. Obviously, it works and many people have found success. I don’t want to sound so negative, but I also feel constructive criticism is fair and not every intervention is right for everyone. I don’t feel they’re very transparent about their approach and I wish I would have had someone to ask the question you just asked me, before I went, so I always try to answer when someone asks.

I could say more but my comment keeps exceeding the character limit! I’m too long-winded and out of energy to edit it all, so I cut a bunch of stuff out >_< . Feel free to let me know if you have other questions.

@ripley and @heatonpatti5 if this is helpful:

I also just thought of something else… If you wanted to learn more about how they approach fibromyalgia, you could find the book: “Mayo Clinic Guide to Fibromyalgia,” by Dr. Barbara Bruce. I did my consultation with her. I believe she oversees all of Jacksonville’s 2-day treatment program classes for various chronic pain syndromes. I had referrals for multiple programs and couldn’t attend the fibromyalgia one. She told me I only needed to attend one because there’s so much overlap and gave me the book since I chose to attend her POTS program instead of the fibro one.. Another reason I suspect the approach would be the same is because she told me she used to be based in Rochester and started these programs, then established at least the POTS program when she came to Jacksonville because she saw a need.