I was first seen at Mayo Rochester in 2017? Can't quite remember... And later, I was seen at Mayo Jacksonville in 2023 with an evaluation through the EDS Clinic.

At Rochester, I was referred to Rheumatology because I had unexplained, persistent tendon pain that was suspicious for an inflammatory arthritis, no biomarkers but a family history of autoimmune conditions, and a small fiber neuropathy diagnosis. Rheumatology coordinated my workup, and collectively unfortunately misdiagnosed me, or missed my diagnoses, depending on how we want to look at it.

They concluded there was "low suspicion" of an inflammatory (autoimmune) arthritis and concluded I had musculoskeletal pain with what was then called "chronic pain syndrome." It's now more widely known now as central sensitization syndrome I think. I already knew that because my Shirley Ryan PTs had identified the central sensitization, and I improved but still had pain that didn't respond as expected to treatment.

If you're not familiar with central sensitization (I wasn't at first), it's when pain changes how your brain and central nervous system process pain signals. If pain is an alarm system, the alarm system becomes extra sensitive and keeps going off disproportionate to the stimuli (I think of it as the car alarm that's too sensitive). It's exacerbated by stress, whether it's psychological stress or stress from the environment.

The Mayo team was really insistent there was no other explanation for my symptoms, and the treatment they push for it, for all types of chronic pain really is their Pain Rehabilitation Clinic (PRC). It's centered on the idea that the pain we feel is influenced by how our brains perceive threats--and that is totally true, and I don't disagree. But I just could never get comfortable with the lack of transparency, rigid structure, and rigid approach to PT I'd experienced at Mayo.

My instinct was that the story my brain was telling about pain was only part of it; I thought there was something else going on, and there was, and my other conditions aren't something that just get better without the proper medication, pacing, and physical therapy. So the Mayo team's insistence on CBT, yoga, guided meditation, diet, exercise, etc. as the way out of my chronic pain actually made my conditions worse because it (a) delayed treatment and (b) made me feel bad about myself because I had been doing all those things for years before it was trendy, and I still wasn't getting better.

At Rochester and at Jacksonville, I tried to communicate to the physiatrist and PTs I met with that my local care team at Shirley Ryan was already well-versed in central sensitization and chronic fatigue, and we had identified a framework for pacing that worked for me, but I got a lot of push-back, which never sat well with me. It felt like their way or the highway.

It turned out their conclusion was wrong because in the years afterward, I got diagnosed with seronegative spondyloarthropathy (an inflammatory arthritis that affects the insertion points of the tendons and has no biomarkers), POTS, and hypermobility spectrum disorder (HSD, though some think I may have hEDS).

That's how I landed at the EDS Clinic on the Jacksonville campus, and that's a whole other ball of wax and a very long story. The EDS Clinic always sets up a PT evaluation for their patients. POTS, chronic fatigue, and fibromyalgia among other things commonly co-occur with EDS. Their standard practice seems to be to refer anyone with those or any similiar conditions that are applicable to what they call "2-day treatment programs." There's a program for all the above and for other conditions as well. That's how I got [re]introduced to Mayo's approach to chronic pain and fatigue and even in a post-COVID landscape, I was shocked that PEM wasn't mentioned at all. I didn't attend the ME/CFS program so maybe it was mentioned there, but PEM isn't uncommon in POTS, and that's the program I did attend.

I'm not saying this approach or the PRC doesn't work; it's obviously evidence-based and works for a lot of people who can access it. There are a ton of success stories on this site.

It just wasn't a good fit for me, and the advice I was being given from multiple providers across disciplines about chronic pain and fatigue was consistent...and consistently inflexible and too aggressive for how I experience chronic pain and fatigue. I feel that can be dangerous; I've been hurt before.

Sorry, such a long reply >_< . Still, I think it could be worth seeing Rheumatology. I think you're right to consider what they can offer. Autoimmune, post-viral, and central pain syndromes are hard to diagnose. At the end of the day, they got it wrong and my local rheumatologist at Northwestern got it right, with less information than Mayo had. It could easily have been reversed, but I wish my Mayo team had listened better to me. Still, I think even knowing what I know now, I'd still have gone through with my evaluations. I just wish the past version of me was better informed and more confident about what works for me.

I hope whichever way you go, you're able to find the path that will work for you.