I’ve had bodywide chronic pain since I was 20. I’m now 25. The onset was sudden and I was eventually diagnosed with fibromyalgia. I had a lot of stiffness throughout the day, but from everything I read and heard this could be considered normal. I had gotten used to life with fibro and as long as I stayed active and took care of myself when I felt bad, I could control it pretty well. However, maybe four months ago my hands started getting worse. They’re so stiff after inactivity (usually mornings and evenings) that I can’t move them properly. It’s like my joints are made of rubber bands. My ring and little fingers are the worst. When I try to bend them at the big knuckle there is a point where I feel resistance and once I push through it they are pulled down. Same thing extending them. They don’t look swollen, but I can tell that they are and I sometimes get red spots over my knuckles. It’s in both hands, although my left seems to be worse (maybe because I’m right handed?) My feet are also starting to get stiff and more painful.
I’m seeing a rheumatologist, but she always seems disinterested in what I have to say since my hands don’t look swollen to her. My x-ray showed periarticular osteopenia, but she said this could be from long term low vitamin d. My bloodwork is always negative, although I did have weird bouts of anemia with elevated monocytes before I saw the rheumatologist. I’m waiting to get my hand MRIs done next week and I’m getting really nervous. They have to show something when I’m having these issues right? I’m so tired of the negative results and being dismissed. Not that I want RA or another condition, but I’m at a point where I need help and don’t want to take medications without a diagnosis. I’ve never had good experiences with prescriptions and I don’t want to jump into anything. My doctor suggested hydroxycholoquine at a low dose, but without knowing what we’re treating it seems like an unnecessary risk.
My job can be physically intense and I’m worried I’ll have to make a career change if things get worse. My hands are just so important for what I do. I work outside with tools for most of the year and I’ve been having trouble with grip, getting things open, and the general sensitivity of my hands. I sometimes feel like a burden to my coworker as he has to help me with things that should be simple.
I guess I’m just looking for advice and a place to vent my frustrations. Anyone out there who had a similar story before diagnosis? Does this even sound like RA? Opinions on the effectiveness of hydroxychloroquine? I’ll be thankful for any feedback. I’ve been way too in my head lately.