Well here I am another 4 months on been to see Neurologists- Cardiologists-Rheumatology and still no further went to see Rheumy just before Christmas said its not SLE like my doctors thought told me its discoid lupus I then asked why I was still getting body tremor's every night said he thinks its because I was poorly last may! really? still have muscle fatigue swelling of fingers joint pain was blue lighted twice in summer of last year suspected heart attack and it goes on can anyone on this site please tell me if you get same symptom's with discoid lupus just feel like I am at my wits end with it all what the hell do you do just feel like I am hitting a brick wall just wish I could have my old life back xxx

6 Replies

  • Your symptoms suggest that your discoid lupus may have become systemic, I.e. SLE. Your rheumatologist should consider adding to your existing medication for discoid lupus, so that these other symptoms are taken care of.

    I understand how scary and frustrating it is - before I was diagnosed I've been in A&E many times with chest pain and numbness down the arms, let alone feeling off. I was convinced that my heart is the problem but it turned out that the heart was fine, it was the lupus that was causing me the aggravation. Once I started treatment for it, these symptoms went away. I then had to deal with the drugs' side effects (such as muscle twitching, for example) but that's what we all have to deal with if we want to live a semi-normal life.

    I used to have tremors in my hands before lupus treatment - rhythmical movement of thumbs, for example. Weeeeirddd...

    Go back to your rheumy and pester for a revised diagnosis, you can't go on like this!

  • Thanks for taking the time to reply will just have to keep pestering until I get somewhere thanks again

  • Sounds like SLE to me, my daughter has SLE she had tremors twitching chest pain etc.....

    All symptoms have gone since she went into remission last November!!

  • Thanks for taking the time to reply think I just need to carry on pestering until I get somewhere thanks again

  • I get the shakes more than I use to. Wake up shaking in the morning sometimes and after I wake from a nap. Not on medication by choice. I just deal with it. If it gets worse, I will try to figure something out. I think it's my nerve endings. Not sure...good luck with finding help.

  • Thanks for taking the time to reply will just carry on pestering until I get somewhere thanks again

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