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How to get a diagnosis

My mum had rheumatoid arthritis her mum had rheumatoid arthritis but my doctor said it’s not genetic. A couple of years ago I was diagnosed with fibromyalgia. After my blood test for rheumatoid factor came back negative however I’m convinced I have RA and not fibromyalgia my vitamin d is low and now recent blood tests show my inflammation markers raised and I’ve not enough red blood cells and the ones I have an enlarged.
I’ve tried to explain my symptoms to the doctor in that when I wake up I feel like I’ve had my fists clenched all night and I’ve slept in a tiny box that stiff tight feeling of being in a small space for too long, when I put my feet to the floor my feet for the first few hours of the morning feel like I’ve been dancing in high heel shoes all night that burning painful feeling doctor said sounds like plantar fasciitis??? It’s not by afternoon its virtually gone. I have what I call flares in that a few days before I feel like I’m coming down with flu exhausted want to sleep in the day then I get a burning like fire in my toes and fingers and they swell up like sausages my pain is in my arms and feet and its constant knawing pain. I’m having another blood test in two weeks will my inflammation markers be higher due to flare.
My eyesight is also affected my vision first thing in the morning is blurred this too improved throughout the day it’s safe to say I hate that morning feeling I’ve noticed over the last two years my flares are closer together why is my doctor reluctant to diagnose and should I ask for a referral to a rheumatologist to finally give me a yes or no answer.
I remember as a child seeing my mum with her hands in hot water crying with the pain and her hands deformed and bent inwards so this isn’t something I want but I understand if it is treatment sooner rather than later is so important so can anyone tell me what do you all think I should do.
Thanks in advance.

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  • miaj
    2 years ago

    Hi Melanie — I have sero-negative RA, so I understand completely the frustration of trying to get a diagnosis. I couldn’t even begin to tell you how many tests I had over the years before I finally got referred to a Rheumatologist who just nodded and said “yes, you have RA”. It was such a relief I think I cried all the way home! And no — not relief to have a disease that’s so difficult to live with (as you say, not something you WANT), but relief to have someone accept that my symptoms were real and get me started on some treatment that has helped enormously. That was the second Rheumatologist I’d seen, by the way, so I’d say definitely ask to be referred to someone else. My suggestion would be to do some research about who is most expert in your area and ask to see them. It seems that diagnosing RA if you’re sero-negative is not always straight-forward, so you need to see the most expert person you can. Good luck — hang in there and don’t give up. You know your body better than anyone so don’t let anyone tell you what you’re feeling is not real. — mia xxx

  • Erin Rush moderator
    2 years ago

    Hi Melanie! I am so sorry you are experiencing these issues and that your mother dealt with RA. While we cannot provide medical advice, for your safety, you are perfectly within your rights to seek a second opinion or to push for further testing. I thought you might find it interesting to know that there is a form of RA called “seronegative RA”, which is when someone is diagnosed with RA due to symptoms, but their bloodwork may not RA. You can read more about it here — Also, if you haven’t already, you might want to check out this information on how physicians reach a diagnosis of RA — Since you have some personal experience with this, I think it’s okay that you question your physician. If you feel he is not the right physician for you, you may want to find a new one. One of our contributors discusses dumping a doctor here — Obviously, something is wrong and it’s good that you are advocating for yourself and your health. I am sorry you are getting the answers you need or desire. I hope this information helps and please keep us updated, if you feel comfortable doing so.

    Good luck! Best, Erin, Team Member.

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