Muscle weakness

The last couple days I've experienced muscle weakness in my legs and it scares me. I will be walking and without warning my leg will become jelly and I lose my balance. It also happens when I stand up. Last night I had family over and it happened when I turned while I was standing. Not only was i embarrassed when asked if I had been drinking but it freaks me out not knowing when it will happen. I would guess this is normal since lupus affects the muscles but is this a temporary thing or should I panic?


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22 Replies

  • Hi,

    Iv had leg wekness un my legs..they go heavy at first and then loss of strength..dont know what causes it and i dont have a diagnosis of lupus. I do have lumber disc problems so maybe a connection. I agree its scary..hope someone with more knowledge can help you.

  • Hi Judylynne

    I too have been getting muscle weakness recently and it's scary. I've found that it's improved when.i've been taking extra steroids!. It's horrible not being able to trust your legs!. I'd tell your doctors about it as soon as you can. What treatment are you on?. Maybe the dose could be adjusted?. Good luckX

  • Thank you Misty. I'm not on steroids currently and only taking Plaquanil and methotrexate right now. If it isn't better tomorrow I'll give the dr a call

  • Hi Judylynne

    Good luck for when you speak to your GP. If your not happy, might be worth trying to see your Consultant sooner via asking to be on a cancellation list or ringing his secretary. This has worked for me.X

  • I went through a spate of this a few years ago, long before my lupus diagnosis so not sure if it is connected or not (but I would guess so). My arms would feel weak too and I'd struggle to lift the above shoulder height. My gp took a blood test. I can't remember what the results were, but they didn't take it any further and that was that!!

    Eventually it did go away, but not for a good few months. I wonder now if it was my first lupus flare. I would hope that your rheumy would be a bit more helpful than my gp! Hope you find an answer!

  • I have SLE and APS I've been having this for years, the worst is when outside and it happens and people think you're if only

  • It's very embarrassing. Glad I'm not the only off balance one out there.

  • I suffer from this every week or so, Im walking then im off to the left or right and i dont know why, i feel dizzy ish light-headed, at these moments I need to stop. My hubby is the rock when im with me so i tend to lean on him and if i can find a seat im on it. If its concerning you like this post says make an appointment for your GP and tell them your concerns.

  • I'm so sorry to hear about this. I have had the same experience several times. My doctor diagnosed mild myositis, which (as you may know) is fairly common in SLE. In my case it resolved on its own each time. However, I strongly recommend mentioning this to your rheumatologist. You might need further testing and/or treatment.

    Feel better soon!

  • Judylynne wtote: " I will be walking and without warning my leg will become jelly and I lose my balance ... it freaks me out not knowing when it will happen ".

    Leg giving-way intermittently and unpredictably is not consistent with myopathy, as that type of weakness would be relatively constant from step to step.

    It sounds neurological : an intermittent electrical fault , ( ataxia ... ).

    My suggestion would be to see a neurologist.

  • Very good point. I've had that sort of intermittent weakness and loss of balance as well, and it definitely turn out to be neurological. But the self-limiting myositis I've had could also seem episodic, I suppose because it was associated with certain movements and postures.

  • I will feel this often, but more of a feeling that I don't know if my legs will hold me up - b/c they feel so weak. Occasionally will trip or mis-step & I feel like such a klutz. But it's like my body won't do what I'm telling it to.

    My old rheummy was very kind about explaining to me that lupus is such a morphing trickster & can affect anything in the body & that no two people have the same exact disease process and no two days may be alike. It has helped me put up with the out-of-the-blue weird symptoms that come and go- some are disabling, some are just aggravating & painful. (My new rheummy -other retired- is just an awful, clinical, science kind of guy who looks at me and says flatly, "Well. Never heard of that.")

  • I'm sorry, that sounds like quite an unfortunate change!

  • Maresy wrote : "My old rheummy was very kind about explaining to me that lupus is such a morphing trickster".

    Your old rheumatologist was full of BS, (aren't they all).

    Doctors are capable of misdiagnosis, but diseases are not capable of mimicry or "morphing".

    If you have a choice in the matter, run a mile from any doctor who uses the word "mimic" in order to avoid using the word "misdiagnosis", as they are trying to deceive you. They are effectively saying :-

    " I didn't misdiagnose you , I correctly diagnosed the illness your illness was impersonating ",

    " I'm not guilty of misdiagnosis , your illness is guilty of pretending to be other illnesses ".

    In reality illnesses do not mimic , imitate, copy or impersonate other illnesses.

    Similar illnesses could be mistaken for each other , but that's excusable / inexcusable misdiagnosis , and no mimicry or "morphing" is involved.

    Lupus is has diverse manifestations so can resemble numerous illnesses , but no mimicry or "morphing" is EVER involved.

    Jon Culshaw is a mimic , Lupus is not a mimic , no illness is a mimic.

    Analogy: if you tried to open what you thought was your car, but was actually someone else's car of the same model an colour as yours, would you call that car a "mimic" or accuse it of "morphing" into your car ? , ( if you did the men in white coats would take you away). It would be case of excusable / inexcusable misidentification, no mimicry or "morphing" is involved.

  • I took it that by using the word morphing he was explaining that it evolves and this is why it takes so long to diagnose. I also took it that her old rheumaologist was approachable and understanding type unlike her new rheumy. Doctors do not deliberately miss diagnose. They can only use the evidence presented to them and their knowledge, which yes in the case of our type of diseases can be limited unless they have spent years studying the subject.

    So as for Morphing it could mean- At the time you had symptoms typical of - - - but with these recent blood tests and symptoms it looks like it is -----.

  • I understood exactly what he meant by what "I myself" termed a morphing illness. He didn't use the words, they are mine. I don't remember his exact terms but what we were dealing with was a group of good docs trying to diagnose, but as soon as they thought it was one thing it did turn into quite another, and this evolved over a long period of time where my biochemistry was not lining up with my symptoms at all. I had at one time 5 working diagnoses, as what I had, indeed, was morphing from one week to another- Hasimoto's thyroiditis, CLK, rheumatic fever, etc. Yeah, it did in fact feel like I was getting into someone else's car everyday. And the group of docs at the Mayo did finally tell me that once my biochemistry came in line with all my symptoms, it made it easier to could give a definitive dx. Lupus does mimic. It mimics the flu (so when I'm starting a flare, I'm not sure if it's the flu or lupus.) It mimics fibromyalgia. It even mimics (for me) a heart attack - which ended up to be pericarditis. But if it was cut & dried, these forums on here wouldn't be so full of people suffering, not knowing how to fight because they haven't been told who the enemy is. It's semantics. Everyone who's been through the "not knowing" time knows what I mean.

    And I still believe lupus is a trickster. And I still love my old Dr., who always kept saying in the beginning, "I don't know what's wrong but I believe you and I won't stop trying to find out."

  • Maresy wrote " It mimics ... It mimics ... It even mimics ..."

    No it doesn't mimic . It may "resemble", but it does not "mimic".

    mimic = imitate , impersonate, copy.

    No illness is capable of mimicry or similar "trickster" deception.

    There is no mimicry , only excusable or inexcusable misdiagnosis.

    [ Would you accept the "mimic" anthropomorphic BS from a car-mechanic who used it to excuse their misdiagnosis ? , personally no : I'd take my car to another garage, if I had a choice ].

  • We'll, MY illness mimics. Enough said. That's my personal experience & that's what these forums are for: to express ourselves. I don't need an English lesson. Just support from others.

  • I get what you mean and I would agree. Its a way of expressing how we feel our disease acts on the body. The fact that its so like other diseases, but at the same time its not, makes it seem as if it mimics.

  • Hi Maresy, Sorry to hear you lost a Rheumy who you could talk to and didn't dismiss what you told him. Hopefully in years to come your new one will of adapted to realise this disease has lots of varied individual symptoms and hat they will learn a lot by using a listening technique.

  • I had terrible falls cutting my elbows, knees, hands, lip, nose and all sorts of things, it went on for years (on hydroxychloroquine for DLE/SLE but also have Raynauds, Sjorgrens, hypothyroid etc) GP checked usual blood pressure etc, rheumy checked neuro signs and said no idea why it's happening, didn't link it with lupus. However since my current flare up have been on steroids (tried Aza for few months got worse, now on Methotrexate) since November the random falls have stopped, I stumble and trip less BUT I now have steroid induced tremors/shakes. Just this evening I was reaching over the kitchen sink to close a window and my arm shook so strongly I couldn't control it, managed to knock a tap on, get soaked and had to hang on to sink with other arm as shaking started down the leg as well and I thought I was going to fall, it's really scary when it's happening. It passes, I feel strange for a bit, my dog gets really concerned. When I tell rheumy and nurses about it, they just say it's side effect of steroids, tough

  • does any one know any information on inflammation of the artery called temporal arthritis.

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