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Hi, my mum had a stroke 5 months ago and went on to have mild epilepsy and then a clot in her right leg at the top, she was not able to do much physio in hospital due to her keep fitting ,hence the probable cause of the clot, so has not got any movement or sense of touch down her right side from her neck downwards.
She is now home and uses a hoist to get her in and out of a chair. My main concern is the fact that her leg and foot are hugely swollen despite being on warfrin for approx 3 months now.It gives her great pain as does her arm which is luckily not very swollen and is worse when something touches her foot or she has to have her leg bent on her wheelchair footplate,I have asked numerous Doctor's what is causing it and how can we help to get rid of it but no one knows what it is !
My thoughts are ,water retention,poor circulation,the clot or lack of movement causing fluid to pool.
The pain she describes as spasm's with pins and needles and her foot as agony and she wishes they would cut it off.
I am at a loss as to what can be done to help her as no one knows what it is or how to deal with it apart from to raise her leg and the only pain relief she is prescribed is paracetamol which doesn't even touch it.
I have tried to find exercises for her but I really don't think she could handle the movement, about a month ago she had feeling in her whole leg as if you touched it with a feather touch she would cry in pain but now she cannot feel me touching it at all apart from her foot.
I hope you can help me figure out what is going on as I know the longer she cannot move it or tolerate exercise the worse the muscles etc will get,
Thank you very much in advance.
Your mom seems to suffer from allodynia - painful perception of light touch. It is unclear as to what is causing it - in fact, this sounds like what may be called 'reflex sympathetic dystrophy' or "complex regional pain syndrome." It is sometimes brought on by trauma or other unusual nerve damage -- I am not sure if this is related to her stroke.
She obviously needs to be treated for her pain. I would suggest going to a pain specialist and having them prescribe some medications -- Tegretol, Neurontin or Lyrica could work but may not be effective right away. She may need opioid treatment for a short period of time just to take the pain away. In very severe cases, minor surgery or "sympathetic block" can be administered.
First, however, make sure that she doesn't still have clot in her leg.
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