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Not Yet Diagnosed - Opinions, Advice Welcome

Hi everyone,

I've had bodywide chronic pain since I was 20. I'm now 25. The onset was sudden and I was eventually diagnosed with fibromyalgia. I had a lot of stiffness throughout the day, but from everything I read and heard this could be considered normal. I had gotten used to life with fibro and as long as I stayed active and took care of myself when I felt bad, I could control it pretty well. However, maybe four months ago my hands started getting worse. They're so stiff after inactivity (usually mornings and evenings) that I can't move them properly. It's like my joints are made of rubber bands. My ring and little fingers are the worst. When I try to bend them at the big knuckle there is a point where I feel resistance and once I push through it they are pulled down. Same thing extending them. They don't look swollen, but I can tell that they are and I sometimes get red spots over my knuckles. It's in both hands, although my left seems to be worse (maybe because I'm right handed?) My feet are also starting to get stiff and more painful.

I'm seeing a rheumatologist, but she always seems disinterested in what I have to say since my hands don't look swollen to her. My x-ray showed periarticular osteopenia, but she said this could be from long term low vitamin d. My bloodwork is always negative, although I did have weird bouts of anemia with elevated monocytes before I saw the rheumatologist. I'm waiting to get my hand MRIs done next week and I'm getting really nervous. They have to show something when I'm having these issues right? I'm so tired of the negative results and being dismissed. Not that I want RA or another condition, but I'm at a point where I need help and don't want to take medications without a diagnosis. I've never had good experiences with prescriptions and I don't want to jump into anything. My doctor suggested hydroxycholoquine at a low dose, but without knowing what we're treating it seems like an unnecessary risk.

My job can be physically intense and I'm worried I'll have to make a career change if things get worse. My hands are just so important for what I do. I work outside with tools for most of the year and I've been having trouble with grip, getting things open, and the general sensitivity of my hands. I sometimes feel like a burden to my coworker as he has to help me with things that should be simple.

I guess I'm just looking for advice and a place to vent my frustrations. Anyone out there who had a similar story before diagnosis? Does this even sound like RA? Opinions on the effectiveness of hydroxychloroquine? I'll be thankful for any feedback. I've been way too in my head lately.

  1. HI Warblers25,
    Thanks for reaching out to us and for posting in our forums. You are welcome anytime to get support or information.

    We are sorry to hear about how frustrating it is getting a definitive diagnosis. While you bring up some interesting points I hope I can provide some information that is useful.
    Like I said getting a definitive diagnosis is frustrating, this article may resonate with you: https://rheumatoidarthritis.net/living/getting-definitive-diagnosis-can-frustrating-process/

    You certainly are trying to get the best medical advice possible so I thought if you were having troubles with your rheumatologist and would like to see if there are others in your area this link might be useful: http://www.rheumatology.org/Directories/Find-a-rheumatologist

    I know you mention pain and of course pain is one of the symptoms of RA (https://rheumatoidarthritis.net/symptoms/) and a lot of members find these two articles helpful.
    https://rheumatoidarthritis.net/living/community-ideas-managing-pain/
    https://rheumatoidarthritis.net/living/community-feedback-combatting-ra-pain-and-stiffness/

    Additionally, I know you mention work, the unknown of what is next or how RA may impact your job can be frustrating you are not alone in this. While the community may chime in on any of these above mentioned, here is an article on workplace strategies. https://rheumatoidarthritis.net/living/community-thoughts-strategies-work/

    Lastly, you mention hydroxychloroquine, this article may be helpful: https://rheumatoidarthritis.net/treatment/hydroxychloroquine/ Remember that different treatments work differently for different people.

    We are glad you reached out and please come back and let us know how you are doing and if you have any additional questions.
    Best Wishes
    Lauren (RheumatoidArthritis.net Team Member)

    1. Hi TeamPokey. Your concerns are valid. Because you have a physically demanding job and the clock is ticking, if it was me I would get a second opinion from another Rheumatologist even if you have to drive to another town. You really can lose your job because you can't get a diagnosis which could mean you lose your insurance. That happened to me. My third Rheumatologist was the one I kept. Tbe others just thought it was a little pain, but mostly in my head. My bloodwork was negative and my joints were not red, hot or swollen. I finally had a huge flare and couldn't get out of bed by myself. I had a rash all over and a fever of 103. At that point my ANA flipped to positive and still couldn't get help.
      The sad truth is you may not be far enough down this road to get a diagnosis right now. Get a copy of your bloodwork and see what you are working with. Was your ANA positive and SED rate elevated but rheumatoid factor showed negative or was everything negative? Some doctors won't diagnosis without a positive rheumatoid factor. Some doctors use those other markers plus the patient's feedback to make what is called a clinical diagnosis. Those are judgement calls. My first two Rheumatologists didn't believe in making a clinical diagnosis.
      If you feel something is wrong, I would recommend pursuing it as far as you can. You are your best advocate.
      Take care.
      KT

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