[TW this post contains descriptions of my own experiences with pain and common negative interactions with medical providers that may be triggering to those with medical trauma. Also includes discussions of “curative” diets, disordered eating, and anti-fat bias in medicine.]
[Note that I also talk about relief I’ve intermittently experienced from chronic pain after 10+ years of dealing with it unrelentingly, largely due to enough privilege to access the kind of medical specialists who don’t take insurance and the privilege to be able to access/read medical research. Every person is unique and none of this is medical advice, because any improvements I have are largely due to privilege like “having someone believe me enough in order to actually operate and remove the organ causing a lot of pain.” If you send this to a friend with chronic pain as an example that other people can experience relief from pain intermittently and they should too MAYBE DON’T DO THAT and reconsider your life choices. Every person is unique, accessing medical care is a tangling thicket of bureaucracy and expense, and what works for my body isn’t going to work for everyone else’s.]
When I was first diagnosed with fibromyalgia, my mother’s rheumatologist barely looked up from the lab results. “There’s not much we can do for you,” she said. “There’s no treatment or cure. Your best bet is to exercise and lose weight.”
I want to talk concretely about the effects of what the common medical advice for fibromyalgia is: namely, to “use it or lose it” regarding exercise; to lose weight; that the cause of one’s pain is most likely some sort of “sensitization” to pain possibly caused by trauma. Whether or not one’s patient has fibromyalgia, I believe this medical advice is potentially harmful. It was to me.
The “use it or lose” it medical advice would become a litany I would hear from rheumatologists on the occasions that I would go because my GP insisted that yes, rheumatologists really did manage fibromyalgia patients like me.
Meanwhile I delved for some kind of solutions or at least practical ways to address pain. I had some luck with physiatry (or functional rehabilitation specialists), because even when no one knew the exact why of my pain they could at least give me concrete tips on how to manage it. It was a physiatrist who taught me that Thermacare wraps exist: heat packs that stay warm for 8 hours and can be worn under clothing! It was a physiatrist who taught me how to make a homemade massager for my numerous muscle knots out of a racket ball and a sock, which is my current go-to for the knots of pain that live beneath my scapula.