Cerebral Palsy
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Pain

martiemartie Member Posts: 12 Courageous
edited August 2016 in Cerebral Palsy
Hi,
I have Athetoid Cerebral Palsy and Epilepsy for a while now I been getting muscular pain and numbness in my back, shoulders, arms, my head leans on my left shoulder and my both hands do have periods of numbness throughout the day. My doctor has prescribe me some medication and made me an appointment to see a physio at my local hospital, I have been to two appointments on both occasions they spent the whole time filling out the same forms and asking me same questions. I was then told on both occasions they are not trained in my condition. Both physios asked me what do I expect from the physio, I said get back to where I was a few months ago vertically pain free, they both actually thought that this was normal for me, my doctor actually told them in writing saying this is not normal for me. Being in this much pain is getting me down and my fear having this for good and the pain going into my hands (especially my left one / good one) because I use it to communicate.
Please could anybody give any advice or tell me where to go to get help.
Many thanks,

Replies

  • kingboy25kingboy25 Member Posts: 57 Listener
    It sounds to me as if there is some nerve entrapment. Try researching alternative therapies. There is a parent of a boy with Athetosis who posts on here sometimes under the name of Mafala who would be able to help. I believe she is qualified in one of the althernative therapies. Hopefully she or someone else qualified will reply soon.
  • EagleEyeEagleEye Member Posts: 1 Connected
    Hi,
    I am a 51 year old female, and have Athetoid CP.
    For the past 2 years, I haven't felt great. At first, it was blamed on my medication, which has been reduced considerably. This, has increased my pain, but for 4-5 weeks my symptoms are not as bad, but then they return. (I get feelings of pressure, especially behind my nails, the roof of my mouth / teeth & sometimes my head & behind my eyes. I also get quite thirsty, drink a lot & have slight pain / soreness either side of my stomach / sometimes have slight incontinence problems. I also get very tired, although I have never been a good sleeper. I have also developed pain in my neck, but then I do use my head to do most things.)
    I had various blood tests: the 1st showed I had a slightly high level of potassium, but they have been normal since. I am going through the menopause, but my symptoms aren't associated with the change of life. A CT head scan was normal. The neurologist seemed to think it was part of my condition, but drs have a habit of that!
    If anybody has had similar symptoms / can shred any light as to what might be causing this, please get in touch.
    Thanks very much.
  • aimes29aimes29 Member Posts: 12 Listener
    Does anyone have increased discomfort in their upper stomach/middle back?
  • nicebootsniceboots Member Posts: 196 Pioneering
    yes I have pain in the middle of my back. My physio put it down to the tightness in my hips and around my pelvis (especially my hip flexors) and the way I stand.
    I'm concerned about curvature of the spine too. I've not been diagnosed with this but the physio I saw earlier in the year didn't know much about backs as she was a neuro physio.
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