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Cerebral Palsy and Back Pain

Eve53Eve53 Posts: 14Member Courageous
edited April 2017 in Cerebral Palsy
Hi there,

I am 24, and have mild spastic diplegia cerebral palsy. Over the last 8 years, I've had increasing pain, particularly lower back pain. I have tried various physiotherapies, pain medications, deep tissue massages, acupuncture, steroid injections and radiofrequency ablation. I have also tried various lifestyles: sedentary, lots of exercise, sports, university and full time work. The only thing that makes me feel better is pain medication, but that provides maybe 20% relief. Walking and standing of any length of time makes it a lot worse.

Also, my doctors are convinced that I should to see a psychologist for pain management and possible depression. However, counsellors tell me I haven't got depression and my overall mood does not affect pain. Certainly being angry or frustrated does... But being happy, content and stress-free does not decrease the pain.

Has anyone got any other tips?

Replies

  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Hi @Eve53 I was wondering if you had been to a pain clinic and/or seen a pain specialist? 

    @mossycow I know you have spoken about chronic pain before, do you have anything to add?
    Scope
    Senior online community officer
  • htlcyhtlcy Posts: 132Member Pioneering
    I second the pain management as suggested by @Sam_Scope. I have back problems as a result of my cerebral palsy and have had to manage the pain. Try for a referral to a specialist pain clinic;  they should be able to help! Hope you get it sorted and keep us posted,
    Heather 
  • mossycowmossycow Posts: 486Community champion Pioneering
    Hi  @Eve53, sorry to hear of your pain. We don't have the same conditions but as Dam said I have chronic pain and have attended the pain clinic. I would recommend if only to give fresh opinion on your condition and that it may give more ideas. 

    I was very suspicious of pain therapy doing anything.... But I loved it. Anne is the one person I see who doesn't touch me or prescribe meds or move me around yet she has done me lots of good! 

    Pain clinics main benefit is that it is tailored to your needs so my experience will be different from yours... But if gp have suggested a pain clinic referall I'd go for it. Worst that can happy is you waste a little time and remain where you are... Best in you get support, new ideas, access to more treatments and maybe things none of us can think of yet

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • GeoarkGeoark Posts: 1,186Community champion Pioneering

    Hi @Eve53

    I have suffered from sciatica from 2005, over time I have found two things which help me to the manage the pain. First was seeing an osteopath. This reduced the pain to a manageable level, but I was also told I would always been in pain, and so far this has proven right. For me being in a positive mind set does help a great deal, but try always being positive.

    I find doing stretching exercises also helps, but the other thing I found which helped to reduce the pain was a Paingone pen. I was very sceptical about this but was desperate for relief at the time. It worked for me in reducing the pain significantly, I know it has worked for others, but it is a little expensive, so worth looking round if you want to try one. There are similar products which are not as expensive, Sorry, while I love this product I am always a little reluctant to suggest it because of the price, especially if it does not work for the individual.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • mossycowmossycow Posts: 486Community champion Pioneering
    Oooooh, whats a paingone pen?  is it that thing I saw on TV and scoffed at??? Does it work?  Fantastic!

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • GeoarkGeoark Posts: 1,186Community champion Pioneering

    It looks like a thick pen. You put the tip against the area where the pain is and click it between 20 and 30 times quickly. Each click causes a tiny spark at the tip end of the pen. Just like a manual tens machine I guess.

    I find it more effective against the skin, but it can be done against light clothing like a t-shirt. It does temporarily increase the pain in the area but releases the body's own pain killer and quickly improves the pain level.

    My daughter got me my first one after hearing me talk about it. It was a half size one so a lot cheaper, so not a lot of expense if it didn't work. When I first got it I thought I would be using it two or three times a day. I used it once and the benefit lasted several weeks. It should be noted despite this it is advertised as a temporary pain relief.

    It did not clear the pain completely but to give an example of the difference if you google the New Kent Road, to walk that distance at the time I would have to stop at least three times to let the pain subside, each time I would need to rest for longer with less benefit as the pain escalated more quickly. Once we got to the Elephant and Castle we would go for a coffee so I could give my back a proper rest. After using the pen the first day I could walk this distance without too much discomfort.

    So yes, for me it does work. If it was not so expensive or the smaller one was more readily available I would not hesitate recommending it to others to try and see how they get on with it.

    The biggest problem I have with it is because it is small it disappears a lot meaning I have trouble finding it when I need it, but suspect my daughter may be borrowing it from time to time.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • wildlifewildlife Posts: 1,316Member Pioneering
    Hi Everyone, Cutting out all sugar from my diet has reduced my pain considerably. Not saying it would work for anyone else but I've noticed the difference. Also I do back exercises first thing every morning lying on the bed. If I miss even one day my back stiffens up and hurts a lot more...
  • Eve53Eve53 Posts: 14Member Courageous
    Thanks for your tips.

    I haven't properly been referred to a pain clinic before, but some of the treatment has had overlaps with being in pain management. I will pursue a referral. What can I expect from a pain clinic? I definitely need a second (5th?)

    I have tried a TENs machine, without much luck. Also, I currently shouldn't have any sensory nerves in 3 levels of my spine, due to the radio frequency ablation, but still have the same amount of pain. It feels more like joint pain, like my hips, knees and ankles. 

    I know I eat tonnes of sugar. It's something I should look into cutting back on, but not sure how I would substitute it.

    On another note, htlcy, do you have a blog called No Superhero? 
  • htlcyhtlcy Posts: 132Member Pioneering
    Hi @eve53 , pain clinic services vary from region to region: really depends where you are in the country. In East Yorks I had regular acupuncture but this isn't currently available in greater Manchester. It's hard to say what you can expect, but it may be a variety of treatments. My first referral to Greater Manchester a few years ago encompassed trying all of the different treatments until I found a useful one. I'd definitely speak to another pain consultant, and perhaps raise concerns re: sugar when you next see your gp. I do, @Eve53 ! It's nosuperhero.co.uk. It's been fairly quiet as of late because life has got in the way. But yes, hello!
  • sophie08sophie08 Posts: 2Member Listener
    Hi eve 53 I have similar issues I find stretching reduces the pain 
  • CockneyRebelCockneyRebel Posts: 5,250Community champion Disability Gamechanger
    Never heard of the Paingone pen but sounds worth trying
    Genuine ones on ebay for under £20
    look alikes under £10

    That is my wifes present sorted

    CR
    Be all you can be, make  every day count. Namaste
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