Hi everyone I was diagnosed with sle about five years ago. Everything has been going as well as it can until a month ago when my legs started to feel week and I felt as though they were about to give way, my arms then Bega to feel very heavy and hard to lift. After two weeks I gave I and went to the doctor who prescribed sleeping tablets and rest. I must admit I have not rested as much as I should but as much as possible, however I am still feeling very weak, sometimes it is too much effort even to pick up a knife and fork. Any suggestions please


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12 Replies

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  • Hello Gillian

    Have you contacted your lupus clinic about these symptoms. My impression is that the onset has been sudden + severe and persistent...+ these symptoms are profoundly affecting your quality of life. Your Dr means well, but your lupus expert needs to know about this sort of thing asap....it's possible your treatment plan needs to be reconsidered. If you're in the UK, you can ask your GP to write to your lupus clinic updating him on these symptoms and asking for advice. Likewise, you should be able to contact your clinic to ask for your next clinic appt yo be brought forward. What meds have you been prescribed...havethese improved in your condition?

    πŸ€πŸ€πŸ€πŸ€ coco

  • I have been given 14 days supply of zopiclone3. 75mg. They have helped a lot with the sleep, I. Was only getting about 4-3 hours a night, and are therefore more alert in the morning, I will ring my rheumatologist up to day. Thanks for the advice

  • You're v welcome, and πŸ‘πŸ‘πŸ‘πŸ‘Please do ring your rheumatologist... zoplicone is fine to help you cope with the strain of these sympyoms but, as far as I'm aware, it doesn't actually treat the causes underlying these sort of symptoms. And this sort of weakness can occur in lupus...so your rheumatologist will want to be involved...if he/she doesn't want involvement (at least so he/she can take a view re underlying causesπŸ˜‰), I'll be very curious why πŸ€·β€β™€οΈ

  • I have had to leave a message with the Secretarys answer phone, hopefully they will ring back if not I will keep trying

  • πŸ‘ŒπŸ‘ŒπŸ‘ŒπŸ‘ŒπŸ€žπŸ€žπŸ€žπŸ€ž

  • Over the last week I have tried to contact my rheumatologist a number of times, leaving messages on the Secretarys answer phone as she never seemed to be at her desk. Twice the operator has tried to contact the emergency number without success. Fortunately I now feel that I am improving but I will resort to a letter to my consultant instead. Thank god it was not a real emergency

  • I am so glad you're feeling a bit of improvement! Sorry your clinic wasn't responsive...and I like your plan of action! Take care πŸ€πŸ€πŸ€πŸ€

  • Hi, sorry to hear this. I suffer from the same but not always as severe as this. I'm on azathioprine to try and reduce this. I am often confused about this feeling...is this fatigue? Is it specific to muscles/joints? I find it hard to pinpoint but an overwhelming ache and every move becomes effortful. I'm always told to rest to aid my recovery but I sometimes feel I'm more aware of it and it doesn't improve when I sit or lie down - maybe I'm just impatient though!

  • You and me both

  • Hope you get this sorted. One tip I have to offer about cutlery is to get a children's set perhaps for when the usual ones feel horribly heavy. I bought a toddler's set for myself. The handles are plastic frog shapes and very easy to manipulate. Amuses others but works for me πŸΈπŸ˜€

  • Hi gillian-51,

    I would recommend discussing this with your consultant. If this weakness is separate from your normal fatigue then it could possibly be caused by something like muscle inflammation.

  • Myositis can be an autoimmune overlap condition nhs.uk/conditions/myositis/...

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