Swollen shiny red knees at the end of the day

Can anyone help me find answers to all the things that are happening. I have been diagnosed with fibromyalgia after all the tests for RA were negative - except the ANA . My father has RA and vasculitis & osteoarthritis & menieres disease. I have menieres & have lost hearing at 54. I also have Hashimotos and have stopped eating gluten as I was having bad stomach and gut problems. I go through ad patches like flares in my joints and really bad fatigue. Then I will be better for a while, I have a red / purple Lacey pattern on my body which is worse when I am cold. I also have raynauds in my hands, feet.sometimes nose. This morning when I was half awake I got the strangest feeling that I was shaking from the inside which has happened on numerous occasions and is disturbing. I have had tests for ANA , Ck (127). CCP & RF negative. Also my ESR varies dependant on each test. Recently it was high & so was my white blood cell & then it was ok again. My joints in knees feel warm to the touch and are red. If you have any information that may be of use to me I would really appreciate it as I don't think I have got to the bottom of what is going on. I have seen two rheumatologists, the second one put me on pelanquil, even though my results were neg, she the put me back in care of the GP,but I stopped taking it because I have strange vision and my mum went blind with septaceimia, so it scares me. I am very grateful for any replies and information & Thankyou.

Castle point

2 Replies

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  • Sounds like you need to go back to a rheumatologist again for another assessment. RA isn't the only autoimmune condition, though sometimes it seems that is the only thing that rheumatologists diagnose. What did they say about your ANA? ANA has particular "patterns" that are more common in different diseases, and depending on the pattern, they may test you for other things, such as lupus, or other connective tissue diseases. Prescribing plaquenil seems like the rheumatologist thought it might be worth considering one of those other things, as that wouldn't normally be the first thing they'd try with RA. If you didn't like taking it, you do need to go back to see the rheumatologist and discuss the symptoms you were getting with it, and ask what diagnosis they were considering. Make sure you tell them everything about your symptoms, not just the joint stuff - including that lacey pattern on your body (its called livedo reticularis, and if it happens with certain other symptoms may give clues to a diagnosis) and that funny shaky feeling.

  • Hi - I understand your feelings of doubtfulness about your diagnosis considering the symptoms and signs you describe. As Earthwitch says Rheumatoid Disease isn't the only autoimmune arthritis - a lot of those diagnosed with Lupus, Scleroderma and other types of rheumatic disease have to wait a long time for a diagnosis.

    If your ANA is positive then it might be worth trying to find a rheumatologist who specialises in a broad spread of connective tissue disease - and also asking on the Lupus UK and the Raynaud's & Scleroderma communities here on HealthUnlocked.

    I think we do worry when we have seen our parents suffer with conditions. Both my parents died suddenly and prematurely of heart failure and I've just had a week long heart monitor because I was worrying as heart disease is very prevalent in my family and I've been getting palpitations. Probably/ hopefully I'm worrying for no good reason but I think we do know when things aren't right even if some doctors tell us otherwise. They aren't always right either - it's just human to make mistakes and just human to fret. I also have Hashimoto's, secondary Sjogren's and Raynaud's with my RD. I'm getting used to these bothering me sometimes even when my RD is quiet.

    Raynaud's can cause flushes and burning as well as the classic symptoms. I don't think the ESR is usually raised with Fibro either - I think this goes with autoimmunity - or certainly that's what I have learned from my doctors. I think it depends how high yours is relative to your normal and also whether you've had colds or other virus's at the time it was taken, and also on your age. It's a very broad measure of inflammation.

    Best wishes, Twitchy

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