And I am so very tired.
I have chronic pain and have been waiting on this rheumatologist appointment for like 6 months. I’m incredibly hyperflexible on many parts of my body (which causes much of the pain I experience) and my doctor suggested I may have hEDS. I don’t really know what I expected. I believe fibromyalgia is “real” but its controversial status in the “medical community” makes me feel a little uneasy getting the dx for some reason. A major reason, I believe, for the claims that it is an entirely psychosomatic disorder or even that it’s entirely fictional is its prevalence in women and an insidious misogyny permeating our understanding of pain.
Idk. Prognosis is fine. Treatment is eating healthier and getting more exercise. It’s stuff I’ve been doing anyway. It all feels like such a waste of time and money, doctor to doctor, x-rays to MRIs to CAT scans to CT scans and on and on and on, all to be told “your disorder makes you feel tired, in pain, and depressed all the time, and there’s no remedy other than pulling yourself up by your bootstraps”. Ok. I guess I’m glad to have a diagnosis. It doesn’t make the pain go away, though.
Thank you for caring. It’s an interesting process to qualify the pain I feel. Often it feels as if I’m on one of those medieval torture stretcher devices, with every joint forcefully pulling against its natural location. Other times, it’s reminiscent of allodynia, every fibre in my clothing becomes enough to send a shockwave of internal burning throughout my body - burning similar to the feeling of a bug bite - hot and irritated, but not necessarily itchy – same goes for touching anything at all. Basic tasks carry a likelihood for me of causing more mundane forms of pain that will last for weeks, such as carrying a grocery bag incorrectly or opening a jar. My wrists and fingers will regularly pop out of place, sometimes causing what would feel like a sprain or break, if I had to have an analog. Same goes for my ankles and walking more than 10 minutes or so.
Re: cannabis, I’ve honestly been using it regularly for the past couple of months as I live in a legal U.S. state. I worry about the potential psychological effects of long term use – especially if I start to equate complete soberness with being in pain and thus never want to be sober… but the physical relief has been a heavensend. It still hurts, but nowhere near as much. I convince myself to do things that are hard when I’m sober. I shower on my days off, I brush my teeth. I do my laundry and I exercise. It’s awesome, but I do still worry about it sometimes. I’m gonna ask my doc for a med card so I can get it for like 30% cheaper.
Thank you again for asking and caring and the recommendations. It’s comforting to talk about the pain without feeling like it’s being chalked up as me being nuts or overweight or whatever. Doc after doc sold me infuriating shit and while I’m not exactly thrilled about being diagnosed with an untreatable disorder we know very little about, I’m glad that after so long I found a specialist who at least takes the pain seriously. I’ve had these issues for over a decade at this point… when I was younger my dad chalked it up to “growing pains”, but alas, I never grew out of em.