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Spinal Stroke and Joint Problems

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    Spinal Stroke and Joint Problems

    This is my first post on here so first of all - hi everyone. I've been a long-time reader of this forum and found it to be very useful. Thanks to all the contributors and especially the people who help to run the forum - I think you are doing a great thing.

    A bit of background on my situation for anyone interested - I had a spinal stroke 11 years ago (aged 17, I am now 28). The initial symptoms were paralysis of the lower body (if you draw a line across the nipples, that was where it paralysis and loss of sensation started), along with loss of pain & temperature sensation and loss of proper bladder & bowel function.

    I and thankful to say that I was truly blessed (by the NHS staff who cared for me) to have had a good recovery over the following months - I still can't feel pain or temperature very well but I am no longer paralysed and have regained enough of my original mobility that it does not affect me day-to-day, I even go climbing 2-3 times a week and don't feel hugely held back by my injury.

    I still suffer from an over-active/neurogenic bladder (lots of sudden urgency and the inability to fully void), however I have recently had botox treatment for the over-active bladder which has worked excellently and given me a lot of control over my life back. I also intermittently catheterise, this is something that I have no issue with.

    So all in all, despite being unlucky in having the injury in the first place, I am very happy with my recovery and current health.

    However, something that is nagging me more and more is joint pain I suffer from in my knees and ankles.

    Basically I get pain in my knees and ankles and they also feel quite weak and unstable. The pain is dull because I can't sense pain very well any more but I know it's there (in fact not knowing exactly how painful it is can do strange things to my mind sometimes).

    My suspicion for the reason behind this is because, without really realising, I am constantly fidgeting with my legs in weird ways as well as getting spasms. Because I can't feel pain very well I think I manipulate these joints in ways that over the past 11 years has started to take its toll on them.

    By fidgeting I mean twisting my legs around each other (crossing them and even double crossing), tensing muscles, wiggling my toes and applying pressure to my ankles when I'm sat down. It's hard to describe really.

    I was wondering if anyone else has this issue and how they deal with it. I find it very hard not to fidget. When I realise I am doing it, I try to stop but then often slip back into it without thinking.

    I'm just worried what I will be like in another 10 years time.

    I plan on seeing my GP about this but since my condition is seemingly so rare, I sometimes find that I seem to be more knowledgeable about my health problems than they are! Even the specialist consultant I saw when first injured had only seen one case before in someone as young as me, and they did not recover. So it feels to me that there aren't many of people with this issue walking around. Hopefully there are a few on here though...

    Edit: I should add that it is suspected my spinal stroke was caused by a blood clot but they never found the actual cause as far as I know.

    Sounds like spasms to me
    T6 Incomplete due to a Spinal cord infarction July 2009


      I agree. Sounds like spasms and a bit of nerve pain. I'm not walking but recovered a lot of function and sensation. Most of the problems with walkers and anti-spasmotic medications is your muscles turn to jelly. You should ask to see a neurologist and ask about a low dose of something like Baclofen to ease the creepy crawly feelings and jumpy muscles. I would try to have family or friends around when you first try one of these medicins in case it over relaxes and you can't walk for a few hours.
      Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

      Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.


        I have these same issues. Your recovery sounds pretty close to mine. I don't actually see any differences. I was diagnosed with mitochondrial disease 8 years after my stroke and only after my son was diagnosed with it. My DNA mutation affects the muscles. It's a progressive disease. You probably don't have it. It's very rare, but you might ask to be tested. They now think it caused my stroke.