I’ll start off by saying that I’d love for it to be RA — not because I want another life-altering disorder but because my medical history in my 34 years of life so far has just been one rare, hard to diagnose thing after another. I won’t try to give a full introduction here for the sake of brevity, but in addition to whatever is going on with my joints/body, I also have an extremely rare form of a neurological disorder. That alone took 28 years to correctly diagnose, despite the fact that I’d been physically disabled in some way since birth. That’s why I made the comment I did. I’ve also had other bizarre/rare medical issues, especially over the past few years.
Right now, I’m diagnosed with seronegative RA by a rheumatologist. Her justification for the diagnosis is that I have had “nodules” in the tendons of my hands that respond well to steroid, symmetrical pain, stiffness that lasts all day sometimes, history of arthritis in my spine, and consistently elevated CRP and ESR since I was 25 (9 years now). I’m negative for RA factor, ANA, Lyme, and CCP. I also don’t have the HLA-B27 antigen. The joints effected are my spine, hands/wrists, elbows, shoulders, feet/ankles, hips, and (sometimes) knees. So, every joint. I feel like I’m running a fever often, or I run a fever; so, I really do understand why she thinks it’s RA.
My issue/question is that I just don’t know if it’s RA pain. Don’t get me wrong, I hurt. I hurt badly. Some days, it’s about to drive me insane. I try to manage it with wayyyy too much OTC naproxen/Aleve… but I can push through. Maybe I have a high pain tolerance. Maybe it’s just because I have to push through. I’m kind of hoping to hear more specific descriptions of what the pain and stiffness is like. I know, of course, that everyone is different. I know my pain can be subtly different some days too. But I’ll try to be as descriptive as I can for your feedback.
I don’t think I have any swelling. If I do, it’s very mild. I have no redness. But my joints are so tender to the touch, especially in my hands and feet. The worst joints are at the base of the fingers, in the palm, so I hate to grip anything. I also already had fine motor problems from my neurological issue but now it’s even worse. It’s like there’s a… bandaid wrapped around every joint in my body, making it tight. I can make a fist, but first thing in the morning my hand doesn’t always want to close. When the nodules were bad, I couldn’t close my hand at all from the pain.
My feet feel like there are pebbles at the base of the toes. My hips… oh goodness. They’re so heavy. Now, bear in mind, I’m obese. I’m working on that because I know it will help, so I can’t help but think my problems are weight related. It’s excruciating to sit at my desk more than a few minutes, but it’s excruciating to walk. Lol. I’m a mess.
It feels like tight rubber bands connect all the big joints together. Knees to hips, shoulders to elbows, that kind of thing. Straightening them out take conscious effort sometimes, especially earlier in the day. But exercise loosens me up. I make sure to get up at least once an hour if not more when I’m working to ease the stiffness and pain.
Some days my neck hurts so badly I can’t bear to hold my head up. My worst pain is in the mid back though, where during a flare up I had a couple vertebrae “collapse”. But even vertebrae that were not fused after that incident hurt.
Things pop painfully a lot. Stretching helps temporarily. I’m still quite flexible but less than I used to be despite trying to stay flexible. It’s that tightness.
I’m not asking for comments on the diagnosis itself (unless you really want to say something, then be my guest!) mostly I’m just wondering if my pain sounds like what you experience or more muscular. I know I have muscle issues because of my neurological disorder, for example.
Oh, and lastly… I’ve been losing my vision acuity (sharpness) since this last episode started. Turns out I have some macular swelling and I hopefully find out tomorrow if it’s inflammatory or not. My rheumatologist seems to expect it to be.
I was on plaquenil for a month before they found this macular swelling, so they stopped it. The opthamaologist has been hesitant to diagnose the eye issue until I’ve been off plaquenil for two months. Tomorrow is the next round of tests. I just began methotrexate. My rheumatologist seems very optimistic that it will help my pain and stiffness. I just feel pretty lost and hopeless. I feel like I’m just on another medical merry go around.