First rheumatology appointment II

Posted , 5 users are following.

I posted a couple of weeks ago about migratory joint pain, stiffness and pins and needles, but no visible swelling.

I saw a lovely rheumatologist but found it a little frustrating. But I go back in a few months after some tests. 

I didn't really get an opportunity to talk in detail about my symptoms. She thinks I have carpal tunnel syndrome in both hands and has given me wrist splints.

She said she doesn't think it's systemic but has ordered anti CCP test and sent me for ultrasound of my hands. She also wants a nerve conduction test, I think, to see if I need surgery for the CTS.

I've been suffering with the pain and stiffness for eight months now. This is massively affecting my ability to enjoy myself and stay mentally well.

If my blood tests and ultrasound are normal - highly likely - where does this leave me? I can sort out the wrists but it means more delay dealing with stiffness and pain elsewhere. 

This is just a whinge really as I'm a bit fed up.

 

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8 Replies

  • Posted

    Yeah. Sometimes we just need to vent a bit!

    I think if your rheumy doesn't think it's RA then it's best you trust her till something proves her wrong – and thank your stars.

     CTS is treatable and is so different.

    Did you manage to tell her about all the other stiffness? Sometimes we have so much to ask and find it all so overwhelming, it's best on our first few appointments to take someone along with us plus a notepad. Get them to write stuff down!

    Maybe next time you can do that? It's so worth while.

    I hope it all works for you!

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    • Posted

      Thank you. Yes, I mentioned the stiffness. I'll take your advice and write some things down for next time.

      I even forgot to ask if there was anything I could take for the pain!

      The only family history she asked about was psoriasis, which I didn't think was an issue. I now learn my dad has psoriasis, but can't think why psoriasis is particularly relevant over other autoimmune diseases (of which there are many on my mother's side of the family).

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    • Posted

      It is probably because there is one form of arthritis called psoriatric arthritis and it can appear even before you have your first attack of psoriasis. It is more common where there is a family history. It seems to be taste of the decade as it is somehing they seem desperate to make any one with these symptoms have - even when the symptoms are textbook for something else (in my case it was polymyalgia rheumatica - a lot of people have said the same though).
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  • Posted

    Hey Elbmow

    There's not much more disconcerting than waiting on tests and trusting the results but rushing to judgement won't help. But you still need to voice your concerns with the docs because unless you do, they take an even slower approach to diagnosis.

    What I mean is that your diagnosis is very specific to you and sometimes doctors take the most familiar path and we all have our own.

    That's my soapbox to care- it's all about you! Don't accept shortcuts if they don't feel right.

    I was and still am dealing with CTS symptoms after it was initially considered "my diagnosis" yet RA was my underlying problem.

    Nerve conductivity study wasn't normal but not severe. Splint are very helpful and keep me from making it worse while I sleep. I'm wondering if surgery would really help me still but I'm not ready. I'm writing on my smartphone now and after a few minutes I'm having the "tingles" but otherwise don't experience too much worse issues. Besides CTS surgery is surgery and I'd like to wait.

    That's my experience. Maybe it's helpful. That's why I check in here. We all have different issues and needs and don't all fit in one box. Good luck with yours.

    Hint on splints. Cut the ankles out of a pair of stockings, put a hole for your thumb. That way they have a smooth feel and don't stick to other things like bedding. Or Velcro themselves to each other. I hate that!

    Cheers

    M

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  • Posted

    My rheumatologist does the same thing. She asked me about my symptoms then stopped me saying that I had some nonspecific symptoms and to speak to my primary doctor about them. Then when i go to my subsequent visits she thinks I'm giving her new symptoms and I tell her no these are the same symptoms, there are many. I noticed she added polyarticular arthritis, so it's always good to ask for your visit summary and see what the specialist takes note of because they don't seem to care or listen. This makes me feel she disvalues my pain, discomfort and health.  I don't like how she smiles at me it's not a warm welcoming smile it's more of a patronizing smile. It's worst when your already brought down by this disease, told you have limited range of motion in your hands, wrists, fingers, ankles, feet, but never told or categorized as disabled and told you are very ill and we treat RA like cancer.  Being informed you are disabled allows you to get physically required accomodations at home and work. This woman never asked me or gave me any info about home, grocery, errands, work and transportation assistance despite the many times I tell her my fingers hurt badly with swelling, stiffness, weakness and locking. It hurts to stand for more than 30 minutes at a time. I can't grasp, hold and open certain things. I feel like no one cares or wants to help and she just keeps giving me death pills. 
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    • Posted

      Can you ask to see another rheumatologist?

      We do tend to hope things will change, but if you genuine don't trust or like your rheumatologist then try to see someone else. You do have that choice.

      I think with this condition it's important to feel you're being cared for and to at least get on with your rheumy. You don't have to love her, but should appreciate her –  perhaps that's the best way to put it.

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  • Posted

    RA starts feeling like carpal tunnel in the wrists and hands but when you feel pain, swelling, stiffness, weakness in other joints and parts then its time to get a second opinion because that RA or possibly fibromyalgia because the rheunatologist told me I have that as well. You can have multiple health conditions or problems and they all should be addressed not just the carpal tunnel and that's a horrible one at that. They need to check your sedimentation rate and you RF factor, also an xray proves RA and rules out any other condition.  Sorry for ranting before this illness and the doctors just infuriate me.  That's why I drink coffee, it makes me happy. 
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