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Another one doubting diagnosis

  • By syzygy

    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.

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  • By ktinflorida

    Hi Sygyzy. Hmmm…. I have a neuro disease and RA. You have me curious.
    My joints aren’t red or swollen either. I still have good range of motion in all of my joints once I get things loosened up. You can’t tell by looking at me that I have RA. I have the fever thing, probably from my neuro issue. Your pain issue sounds like mine, the stiffness, the feet, the nodules. I just had a synovial cyst removed from my toe. My joints pop quite a bit too. You wanted a description of the pain with RA, but I couldn’t have explained it any better than you did. My stiffness is all day long if I don’t get up and move. That is just the way it is.
    I’ve been on injectable methotrexate for years. It made a big difference for me. Even when I was on nothing, my joints weren’t red or swollen, but my bloodwork is positive for RA. I’m also on Xeljanz with methotrexate and Aleve for pain.
    It took about 3 months for the methotrexate to get fully effective once I got to my final dosing level. I started on a low dose and am now maxed out at 25 ml.
    RA is no picnic, but there are things that are worse out there.
    Let me know how things go or if I can answer more specific questions.
    KT

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  • By syzygy

    Hi KT,

    Thanks so much for your reply. I would be curious to know what sort of neurological disorder you have — although I’ll be really surprised if they overlap! I have a congenital type of dystonia (movement-disorder). If you’re curious to know more, we could maybe chat.

    Goodness, our symptoms do sound similar. If it weren’t that so many joints hurt… and on both sides and in the same way… I’d be more likely to dismiss it. It also has come in waves or flares over the years… another reason I’m willing to try the drugs. I just haven’t had good luck with getting ‘straightforward diagnoses’ in my life, so being RA-factor negative doesn’t surprise me.

    Aleve/Naproxen isn’t really doing anything for my pain. I’m up to 1500mg of the prescription every day, and I see no difference. I’m starting on only 4mg of the oral methotrexate. I got the most relief in my pain right after an unrelated surgery a couple months ago: I was on toradol for 5 days with vicodin; then vicodin only for 2 more weeks. Honestly, those 5 days on toradol were glorious! I felt like I hadn’t felt in years, other than just having had surgery. Yet, when the toradol ended… unsurprisingly, the vicodin did nothing for my joint pain. The joint pain was actually worse than my surgery pain, to the point that I just stopped the vicodin after a week so I could try naproxen again. Anyway, I just need to try to find something that could help a bit. I don’t need to be 100% pain free — I don’t think I’ve been pain free in my entire life, for one reason or another (especially because I was born with my movement disorder). But getting some of my functionality back would be nice.

    So, I’m curious if you started on the MTX injection? I would ask to switch to that if it seems to help. I haven’t had horrible side effects (knock on wood) but it’s been worse than the plaquenil was.

    Hope your week is off to a nice start,
    Syzygy

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  • By ktinflorida

    Hi Syzygy. I see you are checking with your doctor about an injectable version of MTX. Let us know how that goes for you.
    My neuro disease is dysautonomia. Pretty much everything my autonomic nervous system controls is on the fritz. It is no fun when your body won’t do what it is supposed to do.
    I think I read that you are getting your PhD while dealing with all of this. That is AMAZING!
    You are one tough cookie!
    KT

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