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Diagnosis

Diagnosed…but not officially

  • By mewhoshops2

    Hello! I’m new on here and was recently told that on top of osteoarthritis I most likely have RA and possibly another auto immune disease. We recently lost health insurance so had to cancel my Rheumatologist appt to have it officially diagnosed or not.
    I’m 56 and have a back injury (herniated disks) from 30+ years ago pain is/has been daily for a long time. Approximately 6-7 years ago I was experiencing what I would call intense pain episodes with fatigue and depression. Normally my depression is just seasonal winter blues but this depression has not left me since then. My pain is daily and I am watching the joints in my fingers in both hands literally grow almost overnight and going into all fingers instead of what was only my pinkies. One pinky is frozen. My left thumb pain has become so painful that I can hardly grip a jar or door handle without horrible pain. My feet always hurt, and they have been this way for years. I have hip pain that is worse on the left side… In fact most of my intense pain is mostly on my left side though I do have pain in the same joints on the right side.
    I did see a rheumy about 15 years ago about my pain (maybe that was another flare up?) but she said it was osteoarthritis and not fibro or RA. She did take X-rays of my hands and run blood tests but never explained to me what she was looking for.
    Finally in January this year I had to do something,I just couldn’t live with this daily pain any longer so I made another doctor appt. She ran a number of tests and they showed elevated RF result though its not significantly higher than the high normal range… Only above normal by a few. Everything else was normal with the exception of high cholesterol and slightly high blood sugar ( 1pt above normal). The rheumatologist appt was to confirm and probably run further tests.
    My doctor started me out on 50mg diclofenac twice a day along with prilosec. I don’t take it most days. It helped for the first two weeks but then it just didn’t feel like it was helping as much so now I only take it as needed.
    I guess what I’m wondering is could this really be RA with such a low elevated RF? Does such a low number mean mine is just in the early stages?
    I would like to know how others were feeling in the early stages and how quickly did it progress? What does the fatigue feel like? I’m just questioning if I’m tired enough to feel that this is RA lol. For instance I have days that I can get stuff done (I am caretakibg my 80 y/o mother) and yes I may feel tired but not like I need to sleep it off but then I have days like these past couple of days where I literally feel like someone drugged me with a sleeping pill and I absolutely need to go back to bed because I can barely function. What are my pain management options with no insurance? I prefer homeopathic type treatments if possible but after reading comments on here I’m really getting scared that my future is looking bleak.

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  • By Tamara Haag Moderator

    Hey mewhoshops2,

    I’m so sorry you’re going through such a hard time! I’ll do my best to hit all the important points.

    I was diagnosed with RA about 18 years ago. I have “seronegative RA,” which means that standard blood tests do not indicate anything unusual. Here’s an article about seronegative RA: https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/. So yes, a person could indeed have RA in spite of what their RF level is. A number of factors, including x-rays, ultrasounds, physical exams, and more sophisticated blood tests, can be used by a rheumatologist to determine if an RA diagnosis is appropriate. I write about my experience with “normal” labs and then having the Vectra test (which indicated moderate RA disease activity) in this article: https://rheumatoidarthritis.net/living/testing-testing-1-2-3/

    The fatigue you describe sounds very familiar to me. Yes, people with RA can have days where they feel functional – even when they feel good – and then other days where they feel fatigued to the point of feeling drugged as you describe. Here’s an article I wrote about my experience with fatigue, in case you find it helpful: https://rheumatoidarthritis.net/living/tired-of-tired/

    As far as what you can do about RA symptoms without insurance, that’s a tricky one. Unfortunately, some of the most effective RA treatments are incredibly expensive, and are unaffordable to almost everyone without insurance. The medicine that you have tried is an NSAID (read more about NSAIDs here: https://rheumatoidarthritis.net/nsaids/). NSAIDs can be helpful in reducing some symptoms after they occur, but some people experience no benefit from them. The more advanced medications, known as biologics, can actually prevent symptoms from occurring in the first place or reduce their frequency and/or severity.

    There are some people who have found that dietary changes make a big difference in their symptoms, but other people find they don’t help. RA is not a “one size fits all” disease, and there is nothing, pharmaceutical or otherwise, that is effective for every person with the disease. With medications, there is often trial and error involved in finding an effective treatment, and this is certainly the case with non-medical options.

    So with that being said, here are some articles about non-medical options that some people have found to be of some help:
    Natural remedies and supplements: https://rheumatoidarthritis.net/natural-remedies/
    Alternative therapies: https://rheumatoidarthritis.net/alternatives-therapies/
    Diet: https://rheumatoidarthritis.net/diet-and-nutrition/

    One of our contributors, Lisa Emrich, just wrote an article about programs for financial assistance, so you may want to explore the options listed: https://rheumatoidarthritis.net/living/finding-help-to-afford-your-ra-medications/.

    I wish you all the best and welcome you to continue reaching out with questions any time you feel inclined. If I didn’t address anything you’re wondering about, please let me know.

    Gentle hugs,
    Tamara

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  • By Monica Y. Sengupta Moderator

    Hey mewhoshops2,

    I am so sorry you’re dealing with so much! Tamara shared some great articles so I won’t do the same but I just wanted to tell you I also have “sero-negative” Rheumatoid Arthritis. I was diagnosed eight years ago and my blood work has remained normal through its entirety. My Vectra test came back negative as well but it’s a very expensive test even with insurance sometimes.

    It’s unfortunately very difficult to get a lot of the medications that work well without insurance but if you ask a primary care physician (possibly at a free clinic near your home) they should direct you to organizations that help with financial aid or other methods to receive the diagnosis/medications. I cannot give you any specifics as these vary from region to region.

    For me, personally, I found that some dietary changes helped but not a whole lot. I drink a lot of green tea (a natural anti-inflammatory to some) and cut out butter and potatoes (huge symptom triggers for me). This was through some trial and error and keeping track of my symptoms (https://rheumatoidarthritis.net/living/keeping-tabs/).

    Fatigue is also a symptom that a lot of our community members are frustrated with. It’s actually something we have a lot of trouble controlling! https://rheumatoidarthritis.net/infographic/strategies-dealing-ra-fatigue/2/ There are some tips for managing fatigue here.

    As Tamara said, you are always welcome to come here if/when you have questions or need support. If you are comfortable, we would love to hear how you are doing! ~Monica (RheumatoidArthritis.net Team)

    I also find that icing and/or heat helps.

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  • By mewhoshops2

    Thanks so much for everyone’s response! I knew I had posted this somewhere but couldn’t find it lol.

    Wow you have given me a lot to think about. I’ll definitely read all of these articles because I need all of the help understanding this disease as I can get.

    Thank you for your encouragement too. I’ve been feeling pretty down about this. I know half of the battle is understanding it. I also have osteoarthritis so all of this time had been certain that this pain is from that… And perhaps it still is, but the more I read about RA the more convinced I become that that’s what this is.

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    • By Tamara Haag Moderator

      Hey mewhoshops2,

      You’re not alone in feeling a little lost as you navigate the process of finding answers and options. Pain is obvious, but the exact cause of it can be hard to determine.

      Please know we are here any time you have questions, need support, or just want to vent. We know how hard chronic pain is to live with, and we’re here to let you know you’re not alone.

      All the best,
      Tamara

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