LUPUS and Jelly legs

Hi, I have been diagnosed with SLE for 4 weeks now and I am wondering if it is usual to have what feels like jelly legs, almost as if the legs are somehow not their own? Also I am experiencing some 'vague' moments and feeling very irritable and irrational at times, almost as if I am having difficulty in processing information (a lot more so than pre-SLE ha!), perhaps it's just stress and the overwhelming feelings when newly diagnosed? Hey and I am normally so positive and churpy....that's it I have misplaced my churpyness.......anyone seen it? :-)

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  • Not diagnosed yet but I regularly get jelly legs and arms.

    And vague moments (or days!).

    You're not alone.

  • Hi jelly legs and the tieredness were the worst for me ,at first they gave me hydroxy which seamed to do nothing then after 12 weeks they also gave me Metatrexate know after 12 weeks of hydroxy and Metatrexate the legs are the best they have been for prob 10 yrs still tiered but legs very good ,first time in yrs been away on holiday and not thought about legs ,.the confusing thing told I had lupus 24 weeks ago was at hospital last week different dr told me no it was prob dermatamyasiutus ? So waiting to see consultant ,hopefully your legs will get better with Meds although when you have a flair up you will get the jelly legs back best of luck keep a positive attitude your legs will get better

  • Thank you for your insight, I suppose it's early days for me, and I am trying to keep a positive attitude :-)

  • Sounds exactly like me. I have been diagnosed for about 18 months now and I still feel the same, though I'm learning to live with it.

    Hold on to your churpiness. You're going to need it.

    πŸ˜€ keep smiling!

  • Thanks everyone for insight re: jelly legs, or what I call Lupie loo legs....churp churp churp :-) great to talk X

  • Have you recently started prednisone? Irritability is a possible side effect of prednisone

    mayoclinic.org/drugs-supple...

    Not sure about the jelly legs ..can you ring your doctor or lupus nurse for advice?

  • Hi jelly legs lolπŸ˜„I've been DX with cutaious discoid lupus 5 years ago november. I was only under a dermy buy after pushing to see a rhumey i am finally under a rhumey now, I get what I call elastic legs is that the same. My legs just go at the knee and feels like there on elastic if you get me? πŸ˜„good luck. Xxx

  • Hi there, elastic legs sounds different to jelly legs, they feel as if they are quivering like a jelly, over sensitive perhaps but they don't go at the knees. Thanks for the reply xx

  • Hi

    I have not yet been DX but yes weird legs they felt like the wouldn't carry my weight, feel very tired even after short distances, could only walk slow and my stride was very short. I have been prescribed hydroxychloroquine by the rhumy I have been on it 6 weeks and can tell a difference already.

  • That's great that you have seen the difference already, me too :-)

  • HI I HAVE LEG LIKE U HAVE TO CONSENTRATE ON USING THEM HAD IT FOR 5 MONTHS NOW be carefull that your knees dont start hurting AND A FEELING OF THE JOINT BEING LOOSE.

    i THINK ITS ALL PART AND PARCEL OF THIS LUPUS.

  • Thank you for your reply

  • Have you had everything else checked? TFT, FBC and I'm sure there is more. I'm not a Dr but it might be worth your while contacting yours.

  • Thank you for your reply :-)

  • oh see if u can get checked your vitamin d levels and b12 levels this can cause this if your not absorbing it through your gut

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