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  1. #1

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    Advice needed about neuropathy

    Hi,
    I have some form of neuropathy. I had a flu two months ago and I have to admit that I probably didn't stay in bed long enough and now it feels like if the flu never went away. My body hurts all the time, mostly it is muscle pain all over the body. My feet and my hands have some altered sensations - numbness and also feeling like if something is crawling around my ankles (like some ants or something). My feet go into spasms from time to time...

    I was in hospital for tests, I had MRI and spinal tap (lumbar puncture). I am waiting for the results. At the moment doctors think it is Guillain–Barré syndrome, but it needs to be confirmed by the results.

    I am extremely weak. Two months ago I was quite a fit girl. Today I tried to do squats and all I could manage was 10 squats! My knees were trembling, my thighs felt like if something was stabbing them and I was completely breathless. After ten I sort of collapsed on the floor and it took a while before I could move. Pathetic!!!!

    My skating went quite downhill. There is not really much I can do at the moment. Field moves are much easier for me now than jumping and spinning, but even for them I feel that it would help if I was stronger.

    Does anyone here have ever had anything similar?

    Any suggestion how to beat it?

    It would be very helpful to know whether I should be trying to build up the muscless or if by strenght exercising I may be making it worse... does the body needs me trying to save the energy so that it can use it to repair itself, or is the exercising going to prevent even more muscle wasting?
    Doing squats and sit up means pushing myself quite a lot, so I am not sure if I am helping it or harming it. I can't be sitting here and hoping that it will repair 'itself', but at the same time I am not sure myself how to repair it. How can one repair nerve damage?

    Thank you for any advice. At the moment I am willing to try anything.

  2. #2
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    Listen to your doctors. If they say rest, REST.

    I had/have ITP, an autoimmune illness. Between how sick I was from it, and needing to be treated with high-dose prednisone for it, I basically couldn't do anything. And for the first month or so I wasn't SUPPOSED to.

    Exercise isn't going to fix nerve damage, and while it might help muscle atrophy, it could make matters worse. Talk to your doctors once they have a diagnosis and ask what you can and should be doing in terms of exercise. Then listen to them. You don't want to make yourself sicker or hurt something because you're pushing too hard and aren't fit.

  3. #3

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    I'm so sorry, hanca. I agree with danceronice - listen to your doctors and do what they say. You don't want to make anything worse. If you were in good shape before you got sick, you'll be able to get back when you're recovered. Right now, the most important thing is to get well.

  4. #4
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    REST!!! I have MS which has similar symptoms to Guillain-Barre but never goes away. Until you know what is causing these issues, rest. Take time away formthe ice as you only cause more problems with whatever you have.

    Fingers crossed it's something trivial....

    Quote Originally Posted by hanca View Post
    Hi,
    I have some form of neuropathy. I had a flu two months ago and I have to admit that I probably didn't stay in bed long enough and now it feels like if the flu never went away. My body hurts all the time, mostly it is muscle pain all over the body. My feet and my hands have some altered sensations - numbness and also feeling like if something is crawling around my ankles (like some ants or something). My feet go into spasms from time to time...

    I was in hospital for tests, I had MRI and spinal tap (lumbar puncture). I am waiting for the results. At the moment doctors think it is Guillain–Barré syndrome, but it needs to be confirmed by the results.

    I am extremely weak. Two months ago I was quite a fit girl. Today I tried to do squats and all I could manage was 10 squats! My knees were trembling, my thighs felt like if something was stabbing them and I was completely breathless. After ten I sort of collapsed on the floor and it took a while before I could move. Pathetic!!!!

    My skating went quite downhill. There is not really much I can do at the moment. Field moves are much easier for me now than jumping and spinning, but even for them I feel that it would help if I was stronger.

    Does anyone here have ever had anything similar?

    Any suggestion how to beat it?

    It would be very helpful to know whether I should be trying to build up the muscless or if by strenght exercising I may be making it worse... does the body needs me trying to save the energy so that it can use it to repair itself, or is the exercising going to prevent even more muscle wasting?
    Doing squats and sit up means pushing myself quite a lot, so I am not sure if I am helping it or harming it. I can't be sitting here and hoping that it will repair 'itself', but at the same time I am not sure myself how to repair it. How can one repair nerve damage?

    Thank you for any advice. At the moment I am willing to try anything.

  5. #5

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    Listening to a doctor is a bit difficult. I went to GP four times, they did not know what was wrong with me, so he told me that he would refer me to neurologist. When I went there a few days later because the symptoms got worse, I found out that the referal has not been done yet. In the end I went to neurologist privately to avoid waiting up to ten weeks to see the neurologist.

    The private neurologist sent me straight to hospital for the tests.
    While I was in hospital for the tests, I did ask about exercising and they told me something like "do as much as you can. Exercise is helpful but don't over do it". Which doesn't really say much.

    Now the tests are coming in about 4 weeks, but because I can't keep going to the private neurologist (it is £250 per visit) I am waiting to get appointment on NHS neurologist. I got a letter from hospital to phone and make an appointment. I phoned there and they told me that they have no appointments at the moment; apparently to meet their targets I have to be seen within 10 weks from the time the referral was made (when I was in the hospital for the tests) but as they don't have the date, they will phone me when they have some cancellation.

    At the moment it feels that no one (from medical profession) gives a sh..t. I am not sure if going back to GP can sort anything out, considering that I have been there 4 times, saw 4 different doctors and they did not have a clue; I don't know when I get my appointment to the neurologist. I feel I have to do something but not sure what.

    When I was in the hospital, they told me that if it is the Guillain–Barré syndrome, that it will go away eventually and that there is not much they can do (except of giving me painkillers). Apparently it is a matter of months. I don't know, maybe I should be happy that if I have this (which I don't have confirmed yet), I will be fine in a few months, but somehow I just can't be happy about this. What is ' a matter of months'? Are we talking about 3? Or 6? Or 9?

    The must be SOMETHING I can do! I just don't know what.

  6. #6
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    no..there really isnt anything which is the hard part. Your body needs to rest so it can heal. If you can walk, walk short distances. Avoid the heat, avoid working to hard. My first symptoms of MS started with a numb finger and not feeling well, and then really progressed until i was in a wheelchair. I'm find now but I learned a lesson about not overdoing it as I had started to heal but decided to go on a huge shopping trip with lots of walking and ended up back on my back so to speak.

    I skate now so i understand you wanting to skate, but it is dangerous is you are uncoordinated, cant feel parts of your body, etc...

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