Hi, I had ME type symptoms when a referral to a rheumatologist was made. While waiting for an appointment I got cancer, had treatment, and developed a lot of pain on top of ME. When the appointment came through the rheumatologist spent about 5 minutes with me and said I have FM and CFS and gave me a leaflet for a support group.
The pain has been progressively worse and now my joints are heavily affected, especially after my ovaries were removed 5 months ago.
An US scan showed synovitis so I paid to see a private rheumatologist rather than wait 4 months, in case it was RA. No inflammation markers in my blood, so it's "just" fibromyalgia with some joint swelling.
I don't feel like fibromyalgia is understood properly though, that it's a label applied to a bunch of people with huge variation in symptoms and causes. I don't know what it means to have fibromyalgia at all. Any new symptom I have is just attributed to FM - but of course, with cancer (and a high risk gene for a bunch of other cancers) I worry any new pain is cancer spread or a new cancer.
The gp treats me like a hypochondriac over everything.
I take codeine but am increasing the frequency with which I take it as the pain is getting worse. I'm on duloxetine which helps the pain but doesn't help depression which means I'm without anti-depressant since I want mobility most! I tried amitriptaline but it was impossible to wake up on it.
I just don't feel like FM is actually a thing and I hate not having an explanation, I hate that it's getting worse, and I hate that every symptom can be attributed to FM.