I recently went into my GP to review how my antidepressants are working (good!) and now that my depression/anxiety is fairly well managed, and I’m getting good sleep (melatonin), I brought up the next thing on my medical list: chronic pain.
About a year ago, my doctor suggested I had fibromyalgia, which is a mystery-pain diagnosis that tends to be thrown around, especially for female-presenting patients, when there’s chronic pain with no obvious injury cause. There’s no test for fibro, so a lot of patients get lumped into this diagnosis when the doctor doesn’t know what’s wrong (or doesn’t care to find out).
Fibro is a real thing! It’s unfortunately just a convenient catch-all for people with non-fibro pain that is hard to identify.
This time, my doctor repeated his belief that I have fibro, so I started doing some research. Fibro is an autoimmune disorder affecting the nervous system. I already have Reynauds, which is the same, and can be triggered by other disorders, so it’s not unusual if I do have fibro. In addition, my mother, grandmother, and aunt all have/hand autoimmune disorders, to my odds of having one go up there as well.
So this time I made an appointment with a physical therapist with an autoimmune/fibro specialty, and I made another appointment with a rheumatologist. A rheumatologist specializes in connective tissues (ligaments, tendons, interstitial tissues, nerves) and are the primary source of information for autoimmune disorders.
I’ve been reading a lot about fibro in the meantime and the more I read, the more I disagree with my doctor. (obligatory I am not a doctor) I’ve self-diagnosed my issues all my life: anxiety, depression, excoriation, reynauds: I didn’t go into a clinic and have someone tell me what was wrong, I already had done the research and, critically, dismissed diagnosis that didn’t seem to fit my situation.
I know that if I look something up on WebMD, the answer is going to be one of two things: either you’re fine, or you have cancer. But I also know that the mayo clinic provides a lot of accurate information that can help me start a search on the right foot. It’s like the wikipedia of medicine.
Anyway, so the more I read about fibro, the more I doubt fibro is what I’ve got. I do match some of the symptoms, but major indicators are missing, and I’m not hitting the majority on the list. I went into my PT (Heather) for the first time on Monday and her assessment agrees with me. I have some kind of autoimmune disorder that’s causing pain, but it’s probably not fibro.
My first rheumatologist appointment isn’t until the end of the month, so I’ll be seeing Heather for another session before then. I like what she’s done so far and I like her manner, which is a great piece of luck! It can be a disheartening search to find a doctor/therapist that clicks. Hopefully the rherumatologist is equally excellent. Fingers crossed.