All the symptoms but no definitive RA diagnosis

I started having problems just after my 42 birthday. Hurting all over, dizzy spells, shaking, itching all over, burning skin, muscle spasms, serious fatigue, stiffness, leg paralysis, arm paralysis, severe headaches, loss of sleep, etc. I went to my GP, went thru a battery of tests for everything from Lyme disease to cancer. Everything came back negative, no RA factor either. Was sent to a sports medicine doctor, because I was having shooting pain in my arms. Did a carpel tunnel test, slight problem with swelling, but he told me nothing to be alarmed about? Next I was referred to a rheumatologist, I had written down everything that was happening for the past year and a half. He sent me for a full body bone scan, came back I had arthritis in every joint in my body. He told me it was osteoarthritis, and put me on meloxicam, and tinzandine. Well, my rheumatologist is a quack, all he wanted to talk about were his problems and his family, never really listened to me and my problems. He said it’s only osteoarthritis, and let it go at that. Two months later I went back to him, different symptoms. Symmetric pain in both hands, knees, ankles, shoulders, elbows, nasty pains in my lower back and neck, muscle spasms that were continuous, and can go on. Well, I quit seeing him, I moved to a different state, ran out of medicine. I have gotten considerably worse, my hands don’t work right anymore, pain in my lower jawbone, that makes it so I can’t eat, and I have dentures! Everything hurts in pairs. I have growing nodules on just about every finger on my hands! Even my toes have them! Now, I am having problems with my throat, feels like a lump in there, burning, sore, hard to swallow, hoarse voice, sometimes hard to breathe. I read that this is a symptom of RA. But I don’t have RA, I have osteoarthritis. I wish someone could give me a straight answer, I am running out of steam very quickly, everyone thinks I am a hypochondriac, that I must be nuts. Some days I don’t even want to get out bed to go to work, but I force myself. Before I had flares, now the pain is all the time, no matter what I take for pain, it is still there. All I have been reading, and all my different symptoms, I am absolutely sure I have RA, and possibly fibromyalgia, with the osteoarthritis. I’m glad I have finally found somewhere to go to talk about what I have been dealing with, that no one will say, man up, just getting old, or get over it! As I lie here in bed, my feet are having spasms, both knees are aching, both elbows are hurting, fingers are hurting. Oh, well, it’s only osteoarthritis, you’ll be fine! Thanks for listening. Have a good morning.

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Comments

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  • 55rainey
    2 years ago

    Just a PS If you are currently taking any steroids for inflammation, to really get accurate test results you should wean off of them slowly first – it will s*ck big time, but its hard for the tests to be accurate if something like prednisone is knocking down the inflammation.

  • 55rainey
    2 years ago

    I went through 6 months of test before my diagnosis and RA runs in my family. I was like no S%^T Sherlock, lol Anyway a lot of other things can cause your symptoms. A statand lyme test for example may not show lyme and lyme can destroy your body. there is a more involved test that cost more so they usually don’t do it. Also issues with your endocrine system can mimic fibro and RA. you certainly could have some OA – I have tons of that too. 22 operations on legs, hips and back growing up made sure of that. Then god decided I needed RA and Fibro and an underactive thyroid too. between the diseases and the meds keeping weight off is a real challenge but i am keeping it under bay now. perhaps it makes sense if not already done to have a FULL thyroid screen not just a TSH but full blown endocrine check up and hormones as well. you didn’t say how old you are but menopause can play havoc on your body and trigger autoimmune crap. They finally diagnosed me by doing an MRI of my hands which are one of the worse hit spots/hands and feet and knees. The MRI convinced Rheumy it was RA and the nerve pain was fibro. be patient – its not always easy to diagnose autoimmune stuff – I used to joke that I really need Dr. House. Best of luck. Feel better

  • Eric Knavel author
    2 years ago

    Well, 55rainy, for one I am a male, so menopause is out of the question. I am 45 yrs old. Just out of the blue I am having another issue, an issue with my heart. Going to see the cardioglist on Friday. I am not taking any meds right now, I ran out. I moved to a different state, and have to find a good rheumy to go over what my previous rheumy said. And plus waiting for my insurance to kick in. I have bumps on just about everyone of my knuckles on my hands, sometimes my knees hurt so bad, it is hard to walk, oh, well I’ll get thru it, one way or another.

  • Richard Faust moderator
    2 years ago

    So sorry to hear that you are having all these difficulties Eric. I am glad you wrote in with your story. Please know that the community is here to support you.

    Receiving an RA diagnosis can be difficult and as this article from one of our contributors points out – blood tests don’t always tell the story: https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/.

    Finding a good doctor can also be difficult. Always remember that you are in charge of you and that no one cares more about your health than you. This article from one of our contributors looks at finding a new doctor and questions for them: https://rheumatoidarthritis.net/living/meeting-new-rheumatologist/.

    You talk about your symptoms and it is often true that symptoms can range far from just the joints. RA is an autoimmune condition that can effect many areas of the body (including the troat). Here is an article from our editorial team looking at some of the unusual symptoms: https://rheumatoidarthritis.net/living/ra-symptoms-unusual-frustrating/.

    Finally, the emotional aspects of dealing with a new condition are often overlooked and misunderstood. This article looks at dealing with these issues and the accompanying stress: https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/.

    I want to stress again that the community is here to offer support and information. I you haven’t already, you may want to check out the Facebook page at https://www.facebook.com/RheumatoidArthritisDotNet/. Wishing you the best and keep us posted on how you are doing. Richard (RheumatoidArthritis.net Team)

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