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Help with pains in knees

Tasha76Tasha76 Member Posts: 11
edited August 2016 in Disabled people
Hi I have cp and am 38 I find waking tiring and hard my knees hurt all the time no pain killers works and physio no help either

Replies

  • milomilo Member Posts: 164 Pioneering
    Sounds very like what I've found recently, although in my case it's my hips that have become extremely painful. My physio and consultant think it's the effect of aging with CP ( I'm 39 and have had to start using a wheelchair after years of fairly good mobility). Like you I find painkillers little help. Scans show signs of arthritis but apparently not so severe that it requires surgery yet! Not sure if any of this helps.
  • Tasha76Tasha76 Member Posts: 11
    Thanks for reply yeah I'm always at docs they not helpful just say take pain killers so annoying.my cp only affects my walking but for ages my knees hurt always and I don't know how to cope
  • milomilo Member Posts: 164 Pioneering
    Think it's a case of good days and bad to be honest. Sometimes I feel like nothing will stop me then I have days like today when my hips hurt and my hands lock up for no obvious reason.
  • Tasha76Tasha76 Member Posts: 11
    True I wish I knew what the future holds really cause most days are bad for me I also have spina bifida acolta not sure if I spelt that correct. May I ask how cp affects u please
  • milomilo Member Posts: 164 Pioneering
    Predominantly it's left side hemiplegia but cos of years of poor gait my right hip is deteriorating. On top of that I have long term damage from polymiositis ( it's a muscle /autoimmune thing a bit like polio)
  • Tasha76Tasha76 Member Posts: 11
    Aww no yeah I broke hip twelve yeAr ago don't know how or why.i has the plate and pins removed this year.was told my knees showing signs of determination but no explanation at all just had blood taken Friday to check most things as my elbows now hurt like knees which I don't get my cp only affects my legs spina bifida my.back I just I could get answered how it will all go from here due to age etc.i do recall being told I will end up in wheel chair from something years ago
  • milomilo Member Posts: 164 Pioneering
    Yeah, as a teenager I was told things would get worse as I got older, guess that's what's happening now
  • Tasha76Tasha76 Member Posts: 11
    Hi thanks did they say any more to u at all many thanks
  • milomilo Member Posts: 164 Pioneering
    edited July 2014
    Not really, they don't seem to know what will happen although physio has said there's not any more they can do, so looks like I will always need the wheelchair and we've had to move to an adapted house with wheel in shower and a stair lift etc.
  • NoahNoah Member Posts: 430 Pioneering
    I can relate to everything you are saying to, my knees are constantly painful.

    I think its because of the extra stress we often put on our body.

    Things that I have found to help are:

    Two walking sticks

    Correct fitting Orthotics

    Physio to strengthen the quads

    IB Gell max strength - And Ice packs.

    I'm currently looking into using Kinetic Tape with my osteopath

    Also hopefully will have a sauna installed soon!

    I push myself extremely hard, but as I'm getting older, starting to realise that you have to listen to your body more and sometimes swallow pride and use my wheelchair.

  • milomilo Member Posts: 164 Pioneering
    Definitely agree Noah. Would be interested to hear how kinetic tape works for you, I tried an early version of it some years ago with limited success but as with my afo's the newer versions seem much better
  • Tasha76Tasha76 Member Posts: 11
    Thank u Noah I feel quite alone with all my problems the doctor don't seem to help or anything I would love a day with no pain
  • NoahNoah Member Posts: 430 Pioneering
    edited July 2014
    You are most welcome to share things on the forum, lots of us do understand, and have much first hand experience.

    I know how frustrating it is when doctors don't seem to help. I hope you find a specialist that can help you soon.

    Its often about lots of small changes, that can make a big difference.

    Swimming is a good, because it strengthens the muscles without putting strain on the joints.

    Yes a day without pain, one day, that is the hope.

    Everyone in this world is in some sort of pain, whether its emotional or physical pain.

    Don't give up Tasha76, You will find something that will work for you.

    Keep us posted how you get on.
  • rcwallace22rcwallace22 Member Posts: 19 Listener
    Have you been referred to the pain clinic in your area?
    They may be able to help. I use capsaisin cream 00.75 % I've recently strained my ankle so I take cocodamol and use that cream. It's like deep heat but without the smell. It main ingredient is chillies I find it effective. I'm also on the waiting list for acupuncture. I also use a TENS machine from time to time. Hope this helps.
  • Tasha76Tasha76 Member Posts: 11
    Thanks I've been refered to pain clinic for my back I'm due to have injections next Tuesday but nothing for knees the doc give me pain killers don't work I feel so bad as have kids and can't do normal stuff with them.
  • NoahNoah Member Posts: 430 Pioneering
    I can appreciate that it must be frustrating Tasha76, maybe talking to your kids about what you can do, and how they might be able to help you do some stuff. Somethings when our struggles are communicated to those we love, and who love us, it helps. I'm sure they might have some ideas on things you can do together. Lots of National trust places have scooters that visitors can use......Try and focus on things you can do, rather than things that are not possible at the moment.
  • Tasha76Tasha76 Member Posts: 11
    Thank u I do talk to my kids and they so sweet all the time I struggle within myself the hardest everyone around my family lovely it just me really
  • NoahNoah Member Posts: 430 Pioneering
    Try not to be so hard on yourself. You've had a huge amount to deal with, with your operations and health challenges, more than most people have to cope with.

    You need to try not too beat yourself up so much.

    When you have negative thoughts try and replace them with positive facts about yourself. Not easy tho, but there are people out there that can really help, maybe some counselling is an idea. Your GP is probably the best person to talk to, as they can arrange all such things if they feel it would help.

    It sounds like you have some good people around you, and that your family think a huge amount of you.

    Don't give up, you will get there.
  • leg_ironleg_iron Member Posts: 20 Listener
    edited February 2015
    I'm in a similar situation. I've got spastic diplegia & for a couple of years I've been getting really bad pain on the right hand side of my left knee. I had an MRI scan & the scan showed that there was a problem in the area of my knee where I'm getting all the pain. But when they did the arthroscopy there was nothing there. I've got early osteoarthritic changes inside my knee which isn't being helped by my CP and by the way I walk.

    I was told by the registrar I saw that the Drs will formulate a long term management plan for me to keep me as mobile as I can be for as long as possible. Im glad that I asked to be referred to the regional orthopaedic centre in Bristol. Currently my painkillers don't touch the pain so I'm going to go back to my GP to get them looked at.
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