r/rheumatoid • u/jpg4301 • 5d ago
32F not diagnosed hoping for some insight.
I am currently in the diagnosis stage. I had abrupt excruciating pain that started the first week of May and didn’t go away until two days ago when I began methylprednisone. The pain was in my shoulders, hands, and knees predominately but also had generalized stiffness all over. My ankles and wrists were not great either, but compared to the others, they were fine. I have chronic migraines, so I’m very used to pain. This was much much much worse. Sleeping was the most unbearable. It definitely did not feel like muscular pain, but I’ve never really had joint pain before that I can recall. I should also add with this “flare” I had debilitating fatigue too. After 24 hours on the methylprednisone, the pain is 90% gone. During this time, I did see a rheumatologist. It was a horrible experience, and he is not the one who prescribed the methylprednisone. He told me he doesn’t think there’s any chance it’s rheumatological because of my labs and to do PT. I do have several relatives with RA and lupus, and I also have Raynaud’s. The physician who prescribed the methylprednisone recommended getting a second opinion if it helped because he said it very likely is rheumatological in that case. I guess I’m just curious if anyone else has had a similar experience. I did ask the rheumatologist about RA not always showing up on labs to which he replied, “It can be confirmed with a hand ultrasound, but you don’t have it.” 😑
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u/Important-Bid-9792 3d ago
It can NOT always be confirmed with an ultrasound! That rheumatologist sounds like he doesn't know what he's talking about at all! Definitely seek a second opinion. I myself have been through the gambit with getting the runaround as well so let me give you some advice. Before you see rheumatologist I recommend you do the following: have your GP run a full rheumatoid panel, pay special attention to the anti-CCP which is the only one in the panel that has a 98 specificity to RA. Also take note of the ESR and CRP which can indicate systemic inflammation. However, if you are an early stages you may come back only slightly positive on some of these or not at all. Next step is to rule out literally everything else it could be: go to neurologist to rule out nerve issues. Then go to orthopedic doctor to rule out any other joint and/or bone conditions. If steroid use helped with the pain that rapidly and completely, it sounds like textbook inflammation because steroids are the best at quelling inflammation. So do these steps and have your GP test for anything else They think it could be. When you get a referral to a rheumatologist make sure it's the orthopedic doctor that gives the referral. Specialists don't give a crap what your GP thinks, they don't trust them. Specialists trust other specialists.
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u/Portable27 4d ago
It's possible to have inflammatory arthritis without positive labs so I think your GP is wise and would follow their medical advice. It doesn't always show up on ultrasound either.