I am diagnosed with inflammatory arthritis and Raynaud's. My consultant thinks I have another autoimmune disease too. Can anyone help me?

I have had minor joint pains for years plus fatigue. In April of 2011 I went into some kind of massive flare up overnight and it lasted for weeks. I had frozen shoulders, wrists and knees, stiff painful knuckles, fingers and thumbs, trigger fingers on my little and ring fingers, Raynaud's phenomenon (which I'd never had before in my life), a dreadful sense of malaise and fatigue (like flu) and skipped heartbeat. My muscles became so weak that I could not raise my arms or get up off the sofa. I couldn't use the stairs. To get something off a shelf I'd need to cup my left hand under my right elbow to boost the momentum. I also developed white painful lumps of hard skin on my fingers and palms which split open and caused all the skin on my fingers and palms to peel off. Then I got little red spots in my nails and ulcers on the ends of my fingers. A barium swallow test due to difficult and painful swallowing revealed acid reflux due to stomach contents coming back up. I had an echo and lung function test which were fine. My ultrasound showed definite synovitis in my hands. My ana was speckled 1:80 (nurse said positive but rheumatologist said negative???) I have had tiny bright red spots in my mouth but they come and go. I have a slightly scaly brownish rash on my eyelids and above my eyelids under the brow and pink broken blood vessels on my nose, cheeks and chin. The consultant said I tested negative for lupus and scleroderma and she is mystified. She said I have got rheumatoid arthritis but suspects another disorder. Can anyone make any suggestions. I would be so grateful for help and advice.

8 Replies

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  • I have no idea, but are you better. These things tend to come and go.

  • Thank you for answering Zenabb. I am much better than I was during April and May but still struggling. I am on my second course of prednisolone steroids and also taking nifedipine, lansoprazole, naproxen, tramadol and cocodamol. I am due to start methotrexate soon. My Raynaud's is much better and I only get about 2 or 3 attacks per day now. The ulcers have healed too. The arthritis is up and down. I would appreciate any advice from people on this site as it's all new to me.

  • Hi Naomi - I have a several autoimmune/rheumatology diseases myself - Scleroderma, Mixed Connective Tissue Disease, Raynaud's, Fibromyalgia, Osteoarthrits....

    However, forget me! A work colleague has Still's Disease, (which was adult onset, as it more commonly affects children, like a form of Juvenile Rheumatoid Arthritis ),and it is a very rare disease, and hard to diagnose. She was struck twice initially by all very similar symptoms to those you mention, so much so that when she was in hospital for 3 weeks, she yelped in her hospital bed just if someone bumped against the bed - google Still's Disease.

    Other than that Polymyosits Rheumatica is another potential possibility??

    Glad you're not suffering as much now as initially:)

  • Dear Naomi my illness started with inflammatory arthritis & Raynauds 30 years and I was diagnosed with MCTD at the time, they now call it overlap ctd as I have had both lupus & scleroderma symptoms since.If your Rheumatologist is mystified have you considered asking for another opinion? I have found Plaquenil good for the pain in muscles & joints and it doesn't have as many side effects as Methotrexate but hopefully the latter will make a big difference to you. Good luck with it all.

    btw the way the muscle weakness does sound like myositis as mentioned by the previous poster.

  • imageshack.us/photo/my-imag...

    Here is a picture of one of my symptoms. If anyone recognises what this might be please reply.

  • Hi naomi, I was originally diagnosed with inflammatory arthritis but when my illness got worse my rheumatogologist thought I might have scleroderma and he sent me up to the royal free for confirmation. The royal free hospital in london (Hampstead) specialises in connective tissue disorders so I would recommend that you ask for a second opinion here. They have been brilliant with me and I am really grateful for all the help that they have given me.

    I really don't think that you should be suffering like you are.

    Best of luck and let us know how you are getting on.

    Nicky

  • Hi naomi. I have a collection of auto immune symptoms. Like you, a lot of the tests show negative. Eventually when my lung function started to deteriorate, they treated me based on my symptoms. If it looks like an elephant, sounds like an elephant, and smells like an elephant....it probably is an elephant! My lung function is now stable & it's the serious stuff they manage. I found acupuncture helped with the joint pain :-)

  • Might be what I have...Systemic Sclerosis...but, as I am not a doctor or rheum. consultant...you need to maybe get referred to find out what you have. Good luck anyway and hope you get a diagnosis soon.

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