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Cp and getting older

Carrie38
Carrie38 Member Posts: 53 Courageous
Hi I am 40 years old have mild cp and in my 20s. I noticed the aging part of cp back bad due to poor posture . Had major surgery to correct this been using sticks or crutches since . 

In my 30s I started with upper back and neck pain from using crutches also Carpol tunnel is bad so painful to use crutches.  I am now ill health retired after years of fighting to stay at work.  I suffer with arthritis and chronic pain. I am always tired and often in bed early . I have cp  mildly but as I get older the effects get worse. 


Does anyone else feel the same.  I need surgery on both hands by hands are my feet and are tired .
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Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
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  • Chloe_Tear
    Chloe_Tear Member Posts: 16 Courageous
    edited April 2018
  • DavidOnline
    DavidOnline Member Posts: 34 Courageous
    Hi Carrie, you might like to know that I am 63. I have had two carpal tunnel operations and they have worked pretty well. I'm not ageing as well as I would like and also have pain and inflammation and walking difficulties, but I have always thought it is important to get as much exercise as possible of whatever I can do, and which includes tai chi and cycling and some yoga. Stretching does help release the tension. I think just do what you can, what your body feels comfortable with, but just go a little bit further.
  • Carrie38
    Carrie38 Member Posts: 53 Courageous
    Thanks for the reply they are not sure now what is wrong with my hands and arms need more tests . I too have mild cp. 
  • htlcy
    htlcy Member Posts: 128 Pioneering
    Hiya @Carrie38 , i have mild cp and am increasingly struggling with increased pain and fatigue. I have found that Baclofen helps to relieve tightness and take analgesia when necessary. I also need to sleep at the same time every night to function well (and at weekends I nap quite a lot!). I started a full time job in September which has been overwhelming in some aspects but luckily my employer is understanding. Sorry you're struggling but I always find comfort in the fact I'm not alone :) 
  • Carrie38
    Carrie38 Member Posts: 53 Courageous
    @htlcy
    I am pleased you have a good employer.  I was ill health retired 2 and a half years ago. I struggled with pain and fatigue.  I can't sadly function when I take Baclofen I have tried it before. I have to go to bed before 9 most nights as shattered.  I struggle to stay asleep with my pain levels.  I only have cp mildly too for  me it's the ageing process. X
  • littlemissinnocent
    littlemissinnocent Member Posts: 13 Connected
    This may sound daft, but it's so nice to see that others also have pain. I never really realised CP (or things related to it) could cause pain. My thoughts have always been that it can't get worse, but lately I'm struggling.
  • lozzer25
    lozzer25 Member Posts: 89 Courageous
    I have intermittent sleep I constantly wake up never wake up in the morning refreshed my shoulders and neck are always tight I have an essential tremor in my leg which I have to have botox for I take baclofen but it seems to be only limited to hands doesn't do anything for legs neck and shoulders if I raise my arms above a certain level they start to shake and are weak when it comes to lifting shopping is difficult walking tires me as the spasticity in my leg causes my foot to turn in and it is also weak as I have used my right to bare all my weight if I go down on my left leg I can't get back up I found out when I was 25 that I had mild spastic diplegia and upper limb dyspraxia i am 32 now and in the last ten years I feel it has definitely got worse
  • DavidOnline
    DavidOnline Member Posts: 34 Courageous
    I'm realising that CP does get worse as you get older. It's not static and it's not just due to secondary issues caused by the CP. For example, I am much more likely to have a muscle spasm, esp. in reaction to environmental changes (e.g. sudden warm to cold change - plunging in cold water), and my right leg turns inwards as well as having lack of motor nerve connectivity. If it were due to the motor nerve being cut, it wouldn't necessarily turn inwards in that classic CP manner. Why is there no research on this? Why no medical, let alone NHS, awareness and support?
  • Carrie38
    Carrie38 Member Posts: 53 Courageous
    I am sorry to hear other people's struggle with cp and ageing.  I am having a hard week with being tired all.the time on top of the normal pains etc 
  • Lucysam25
    Lucysam25 Member Posts: 35 Connected
    My doctor told me years ago that you will get worse has you age she was right i am i take Baclofen  also naproxen  also Dihydrocodeine  I am like a stick when i try and peel my self from the bed in the morning 
  • Lucysam25
    Lucysam25 Member Posts: 35 Connected
    I every. One i have mild cp  &  sina-bifida osteopriss i am only 61 years old i have to have a hip replacment and have arthritis of the hips and knees i take baclofen naroxen dihydro-codeine  also  the drs told me when  i was only in my  thirtys by the time you  get to fifty's you will get worse but why can't the People likes of the workers from DWP see that you are not well  it makes my blood boil 
  • Carrie38
    Carrie38 Member Posts: 53 Courageous
    It's very frustrating I have been ill health retired  3 years now.  And still have to go though benifit side of things every 3 years I do not get better as my cp will not go away lol 
  • DanceDeb
    DanceDeb Member Posts: 25 Connected
    I have mild CP and most of my years I have been in discomfort, but Have function but about 8 yrs ago, after a bout of physical exhaustion I had anxiety and depression. I developed double vision, hard of hearing which has been since I was 19 yrs. I have ache and pain in general, I manage my high tone in neck and hip with we
    Excerise, but since I have reached 55 yes my pain, arthritis in my hands, arms, shoulder and knee have got worse but the fatigue has unmanageable. Dr don't understand. I have recently achieved get my hours reduce to 30 hrs a week with slot of evidence. 
    I have applied for PiP but I doubt they will give me it because although in pain and tired I can still independent with transfer, personal activity but not enough energy to carry out cleaning because with everything I am exhausted.  

    I have also have TMJ in my mouth. I am finding everything that physical goes wrong.   How do you cope with aging process are they specialist with CP
  • Carrie38
    Carrie38 Member Posts: 53 Courageous
    I started to struggle more in my late 20s with fatigue and pain all over and mobility is getting worse.  I had to give up working at 37 I understand everyone is different.  I am in my 40s now and feel life wirh cp is getting harder strain on me body and pain fighting to keep mobile   

    PIP is there to help and support you  .Hope you get the help yoi need.  X
  • DanceDeb
    DanceDeb Member Posts: 25 Connected
    Wow it gives me a sense of not being alone. These comments and I thank you all for listening
  • Carrie38
    Carrie38 Member Posts: 53 Courageous
    I felt like that as I know nobody like me old before my time lol
  • DanceDeb
    DanceDeb Member Posts: 25 Connected
    Yes I know what you mean, people look at me and they say I look normal, what ever that means but they don't know the physical , mental and emotional effect of CP . I find I have education people to make them aware.
    It's reassuring that they are people like us experiencing similar effect of CP. I knew it would happen but I thought maybe in my 60s. I do wish GP have more understanding?  I used to get DLA for years until they changed it to PiP I waiting them to see me ???
  • chiarieds
    chiarieds Member Posts: 12,424 Disability Gamechanger
    From a very different cause & its problems. I can still so identify. Apparently my condition, Ehlers-Danlos Syndrome (EDS) is studied by a USA-based centre about this & 'ageing.' When I was approx. 40 years old, then said I likely had the body of an 80 year old.
    I experienced intermittent problems as a teenager, which worsened in my early 20s; it all seemed to go pear shaped when I hit 40, & I eventually stopped working in my 50s.
    @DanceDeb -  with PIP, if you can't do an activity 'reliably,' then you're considered unable to do it. Pain comes into that consideration, & also how you feel afterwards; the consequence of attempting/doing an activity/descriptor that's looked at with PIP, such as exhaustion or fatigue, so you're unable to repeat an activity as often as often as you'd like because of this. Cleaning your home is not one of the descriptors (it all relates to certain activities of daily living, &/mobility), so however this does of course matter, that's not taken into consideration.
    Scope has a specialist CP information officer, @Richard_Scope who may be able to point you towards a specialist(s) you might see as regards your CP.
    I see you are an OT, & I'm a retired physio; from what you've said we both know the value of exercise, but it can be a struggle, tho always worth it!
  • DanceDeb
    DanceDeb Member Posts: 25 Connected
    Thanks for the advice, I am still working but had to reduce my hours or will be mid Feb die to fatigue. It's good to be connected 😌

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