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Not Yet Diagnosed – Opinions, Advice Welcome

  • By Warblers25

    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.

  • By Lauren Tucker Keymaster

    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:

    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:

    I know you mention pain and of course pain is one of the symptoms of RA ( and a lot of members find these two articles helpful.

    Community Ideas: Managing RA Pain

    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.

    Lastly, you mention hydroxychloroquine, this article may be helpful: 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 ( Team Member)

    • By Anonymous

      Hi Warblers25,

      I can honestly say that I feel your pain. Since the birth of my son (about seven months ago) I’ve been experiencing extreme fatigue, joint pain and stiffness that lasts throughout the day. At first I wrote it off as tiredness, dehydration or poor diet, but then my second joint on my middle finger on my right hand started to feel painful for no good reason. I ignored that for another month until I grabbed a pillow one night before bed and nearly fell over from the pain. I luckily have a great family doctor who quickly referred me to a rheumatologist but my experience with him has been disappointing at best. My blood work has all come back negative, aside from anemia and a vitamin D deficiency which he seemed disinterested in investigating further. In fact, since my first meeting with my rheumy I have kept detailed notes in my planner of my symptoms and any changes in them that I have been experiencing but at our last meeting he did not listen to what I had to say, nor did he seem concerned that I have two additional joints that are causing me pain now. He told me to continue taking vitamin D supplements and after being in his office for two minutes he tried to send me on my way. When I asked him when I can expect a diagnosis he told me “there’s nothing to diagnose”. I felt like he had just punched me in the gut. I am not imagining these symptoms that are reducing my quality of life, nor am I exaggerating them for his amusement; I am suffering quietly and patiently while he brushes me off as not really having an issue. Basically my choices in his eyes are to get much much worse or heal completely. Until then, no diagnosis.

      The fact that my joints aren’t red and warm, there are no nodules and I’m negative on the blood work panel has in my opinion lead my rheumy to brush of my symptoms as inconsequential, though in five months when I return to work I will have to go back to a very physically demanding job position that I know in my heart I cannot perform properly. Without a diagnosis however, I cannot get alternative accommodation which scares me because being unfit for work could put myself or other people at risk of serious harm.

      I feel like the fact that my symptoms do not check all the boxes for a standard RA diagnosis, that my doctor is either scared, unwilling or not trained well enough to make a diagnosis. I certainly don’t want a disease but I know in my heart something is very wrong with my body and to suffer for months with no answers and a looming return to work ahead of me, it leaves me anxious and afraid for the future and my wellbeing.

      Worse than the possibility of having a disease is feeling like you already have it and no one will validate your concerns. I wish I could just find some answers and as a result, some peace of mind.

  • By ktinflorida

    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.