Dead/numbness tingling legs

Does anyone suffer with limbs mainly legs feeling very dead An numb. Last year I suffered very bad with numb dead tingling legs which put me in An out of a wheelchair. Past few days now mainly today they have hit me like a ton of bricks.... just from my knees down on both legs are very dead, heavy and tingling.... I have been Newley diagnosed with fibromyaligya which I don't think I have, I was diagnosed with uctd and the first stage of lupus but they said I don't have that An just have fibro.

13 Replies

  • Hi. I don't get the numbness, but I do get burning pain and tingling in my arms and legs, and they feel heavy like they have weights attached. They've told me this is fibromyalgia and not Lupus (I had a previous diagnosis of Lupus but now all ANA tests are negative). Have you seen a Neurologist? It might be a good idea to rule out other illnesses like MS too. I also have a brain tumour so I suffer with a lot of headaches too, but they also might be chronic migraine. Not sure at this point. I hope you get the answers you need soon. x

  • I saw a neurologist at the very start of my illness to rule out ms, had the nerve conduction test too which was normal. My gp was going to refer me again but when I said the nerve conduction test was normal he decided not too.

  • Oh I see. Well at least it isn't MS! That's a relief. But in the long term it's not really that helpful having a diagnosis of fibromyalgia in my experience, they don't know how to really treat it. Pain killers are useless in the long term but take the edge of things. I take Nortriptyline at night, but not sure that's even helping. Have you had any success with meds?

  • I know i was very upsest when they said its not uctd/lupus as you said not very treatable and not a lot of drs know anything about it..

    Iv had no luck at all with meds, iv been on everything... I know take amptrippiylne at night time too but doesn't take my pain away at all, cant up it as im quite small so makes me very groggy and dopey the next day.

  • Yes its common with neuropathy and fibro, also sunburn feeling lower back

  • And also post thrombotic syndrome you had a dvt

  • Hi there

    Long time no see :)

    In answer to your question my answer would be a very big yes!

    However, I get mine when I am in bed at night in both legs. They don't feel numb as such. Well I guess they do!! I don't really know how to describe it. They just feel incredibly heavy and painful.

    Do you mind me asking why you don't think you have Fibromyalgia? It would be interesting to know what you think you are suffering from.

    My personal opinion is that we know our bodies best and how we feel. Almost everything I've had investigated or operations for, I've known far in advance myself what the problem was.

    What are your Lupus symptoms? I hope you don't mind me asking.

    Lu xx

  • I have read and been told that with fibromyalgia there is no inflammination in the body? I have had numerous of blood tests (ana and other inflammination blood tests) which have been sky high indicating i do.. I dont want to tread on no ones toes with saying i know i dont have fibro as it is a massive gut feeling. I have tried to explain this to my gp but there not interested and wont refer me back to my rhumotologist.

    I suffer with numerous symptoms, the main thing i dont get with lupus is the common butterfly rash across the face which isnt always the way with patients with lupus.

  • Hi again

    I don't see why you can't question a diagnosis.

    You know your own body far better than anyone else.

    Is there any chance that you could see a Rheumatologist privately?

    You could also try seeing a different GP in your practice and see if they will refer you?

    It's surprising how many people are misdiagnosed.

    Provided that you word it nicely enough I don't see why you can't have a discussion about your thoughts with your GP.

    You are correct about Fibro sufferers not having inflammation in the body.

    Maybe take someone with you for moral support when you go to see your GP.

    Good luck. Let us know how you get on.

    Lu xx

  • Thank you for your response i have now emailed my rhumotologist regards to my concerns with being mis diagnosed. Hoping for a reply next week and get him to see me again, fingers crossed!

  • I'll keep my fingers crossed for you xx

  • Hi there , I hope your feeling a bit better. I do get very numb useless arms especially my left and with excruciating pins and needles. My left leg goes dead too Wich makes me look like I'm half cut walking down the road on a bad day. I haven't found anything a trick to help I normally just sulk. Sorry your having this , I was told to take extra zinc by a friend who is a nutritionist as it helps cramp and dead legs but I haven't found it to work but anything is worth a go.

  • Hi, my right arm and hand goes numb and pins and needles,happens most days.sometimes my right leg also.

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