Mixed connective tissue disease

I now have MCTD apparently .....after being diagnosed with Sjogren's about ten years ago.

The muscles in my legs and arms feel weak now and I've got a walking stick and a blue badge.

At the end of last week I felt really good and felt I could walk without a stick but pushing the supermarket trolley was really hard on my upper arms. I was fine till Sunday but then I felt unsteady and the Amitriptylene stopped keeping the peripheral neuropathy under control. Today I feel the same + pain in my parotid glands and

Flu like exhaustion (temperature sub normal)

I take HCQ and Mycophenolate plus Amitriptylene.

Do you think it's just a flare. I'm sure it is but wonder why this has happened.

I feel like curling up in bed but I think my muscles will become even weaker.But I'm feeling pretty cheesed off ! It's so dispiriting. Sorry abou the moan !

6 Replies

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  • Hi bones-bones,

    It sounds as though you could be experiencing a flare. Have you spoken to your doctor to let them know? Sometimes flares with conditions like MCTD or lupus can come on for no apparent reason; they can be very unpredictable.

    Incase you haven't seen it, we have a factsheet about MCTD which may be of interest to you; lupusuk.org.uk/wp-content/u...

  • Thank you Paul...I have read the fact sheet. MCTD is bit of a mishmash isn't it. I think this is probably a flare though I won't bother my GP who is my joint career.

    Do you think the Lupus forum is the right one for me ?

  • Hi bones-bones,

    Have you discussed with your GP or consultant what you should do if you have a flare? Some people may be advised to temporarily increase their steroid dose or similar to try and nip it in the bud.

    Yes, I think this is the right forum for you. Many other people here have a diagnosis of MCTD or similar and you will share a lot of symptoms and experiences with most members of this community. If you ever have any questions that somebody isn't able to answer, then we can always point you in the direction of somewhere that might be able to help too.

  • Thank you Paul.

  • I really think you should let your med team know. You may need to increase meds or get others the orevent tissues getting more damaged. Could I urge you to get an appointment. Good luck

  • Thank you Galway girl. I am feeling much better now. I think it must have been a flare plus an infection. Pushing a supermarket seems to make my shoulders painful nowadays but bearable as long it's not a big shop.

    Thank you for your thoughts.

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