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Decreased mobility and fatigue with CP

Shelley79Shelley79 Posts: 5Member Listener
edited December 2014 in Cerebral Palsy
Hi I am 35 and have found in the last year that I am much more tired, fall over more and have increased pain and spasms. Has anybody else experienced this and are there ways that I can help myself. The tiredness means I am having to drop out of a few social things.

Replies

  • NoahNoah Posts: 430Member Pioneering
    Hi Shelley79,

    Thanks for posting on the forum, you are certainly not alone, falling over more, when tired is common, I find that I often fall over if i'm not concentrating to. And the 3 + times more effort we have to exhort to do everything does often lead to being tired almost all the time. So what can you do to help yourself,

    It may sound like a silly question, but do you use any type of walking aid or stick to to help balance you when you fall?

    Have you considered, or discussed with your doctor the possibility of different types of orthotics that may help? There are lots of different types out there and its about finding the one that's most helpful to you.

    On the subject of pain, are you finding that it is mainly your joints that are painful, due to the extra stresses that your CP gait had on your body, or is the tight muscles that are painful? Guessing your swimming that you do, is helping. I find using some local pain relief gel is helpful, and taking regular baths with muscle therapy bubble bath, helps with the spasms.

    Sorry to hear that you have had to drop out of some social things, hope you find something that works for you so you are less tired, and able to do the things you want. Please keep us posted.
  • Shelley79Shelley79 Posts: 5Member Listener
    Thanks Noah, I used to find baths useful but at the moment I live in a house that just has a shower. I am moving around February and I am hoping that having a bath will help with the spasms and pain.

    I have a cm raise in my left shoe which has reduced the falls. I don't use a walking aid.

    It's good to know I am not alone as sometimes it can feel as though I am, mainly because I don't talk much about CP to my friends.
  • NoahNoah Posts: 430Member Pioneering
    Your most welcome, glad to be of some help, feel free post anything on the forum, as many of us on here have CP and we can all help each other with our experience. Hope moving to where there is a bath helps. Using a walking aid is a personal decision, but have have found using two walking poles helps reduce my falls and uses some of my upper body strength to help to compensate for the loss of strength in my legs, it also helps keep me standing upright which helps my back, and reduces the load on my knee joints which have taken a battering over the years with the my heavy CP gait. Keep us posted :-)
  • nicebootsniceboots Posts: 195Member Pioneering
    Hi I'm 28 and have found over the past 3 years or so that I'm more tired and uncomfortable. I used to be extremely active, and took part in a lot of physical activities including cycling and walking, I also do quite a physical job where I am on my feet a lot.
    I have had to makes several changes to my lifestyle, I sold my bike as I kept falling off. Two years ago I started taking Baclofen to reduce tightness and muscle spasms, which has really helped make me a lot more comfortable. I have started using a stick when walking longer distances or when I'm having a 'bad cp day', which helps reduce fatigue and the risk of falling. It also helps hold me more upright to take the pressure off of my back, as I walk with quite a crouch at times.
    I also take long baths in muscle soak (especially this time of year) or if I'm staying somewhere without a bath, I use the shower head on pulse or massage function and hold it on the tightest muscles to help relax them.
  • redchicken43redchicken43 Posts: 48Member Pioneering
    I get tired as well and with my CP there is a complete an utter randomness in how it can effect me in any particular day, but there are things that I find useful and can help.

    1) Get enough sleep (easier said than done)
    2) Hot baths really help with my muscle spasms at night (sorry everybody says this)
    3) Drink plenty of water and hour or so before bedtime as this helps with the cramps.
    4) Avoid drinking too much alcohol at night. The dehydration that this causes increases the chance of muscle cramps and waking up with stiff legs.
    5) Exercise. Exercise. Exercise. Sorry to over emphasis this but its real important if you are able to do something each day. Be it walk to the bus or a stroll around the park.
    6) Find a comfy & supportive pair of shoes. This can have a tremendous effect on your wellbeing and getting it right can reduce the chances of you falling down.

    Hope this advice is helpful.

  • NoahNoah Posts: 430Member Pioneering
    All good advice redchicken43. Thanks :-)
  • Shelley79Shelley79 Posts: 5Member Listener
    Thank you All there is some great advice here, also I realise I am not alone. I am glad I joined the forum
  • joedeaf54joedeaf54 Posts: 1Member
    am 60 yrs old yes tired is comon always with c p also i have muscle spasm all the time its overactive spasm when i was 29 yrs old i was working as chef for ten yrs then one day fell on wet floor as i was in hell of pain as i got scolisico all my liife what dr said its comom with c palsy add with scatic neve too so the hospital took me in as i cant bear the pains and spasm tried everything three times tracking for 5 weeks and therpy pool and every thing they put me on got specail bed with firm matt also took my old bath and put new shower and stairs rail and my life became manageing to live on and get on with life but only one things i take tabs over 20 a day
    and YOGA is good for you but i am deaf and read other lips very slow and struggle but i made others in group of yoga gave them better teach them better cos i always put the hand up to ask them questions or write down

    only thing is muscle spasm always there but you can relax on chair for long time and if the muscle spasm is too overactive , have to go to hospital emerg and accident ward ask for injection to stop and calm down the pain but sore muscle stay in ward for a hr then home again its my 4th times i have done . please note my english is not good hope all understand GOOD LUCK and relax
  • becky82becky82 Posts: 2Member
    I have been exactly the same I am now 32yrs and found I cannot do a lot of the things I used to be able to do 6 months ago. I waalk with crutches but get increasing more tired and have concentration and memory difficulties. It is really frustrating because I want to be able to go out on a night time. I have regular neuro physio which helps me stay on my feet. But I am also finding I am falling a lot more
  • Shelley79Shelley79 Posts: 5Member Listener
    Thanks Becky it's really useful to know that I am not the only one. It can feel a bit lonely sometimes. In the past four weeks I have had pain in my foot and have lost more mobility as a result. :-(
  • leg_ironleg_iron Posts: 37Member Listener
    I'm 47 & have Spastic Diplegia CP & as I've got older my mobility has got worse.  I've found that I cant walk as far as I used to & I have to stop more due to back pain.  I do get more tired now than I used to. 
  • becky82becky82 Posts: 2Member
     It is so annoying. I can tell by how many coffee shops I am going in to sit down! My purse isn't happy lol. I have severe back pain too due to spinal stenosis and osteoporosis also how my cp makes my pelvis tilt. I hate how professionals can never admit that this is something that is likely to happen. Well in my case they have always been reluctant to say why my cp symptoms are getting worse
  • Shelley79Shelley79 Posts: 5Member Listener
    Yes same here. Nobody will tell me anything about it. Also it seems ok to leave me in pain. I do wonder if I was able bodied if they would investigate the cause of my pain further.
  • NoahNoah Posts: 430Member Pioneering
    It is no fun being in pain all the time and tired, I think many of us develop a very high tolerance level or pain thresh hold.

    Something that has changed my life in the last 12 months are my hinged AFO's, I'm still learning what is possible with them,  they don't take the pain away, but they have improved my bio-mechanics dramatically and have helped reduce my falls, and I am a little less tired than I used to be - The only time I'm not wearing them is when I'm in bed!

    We are all different, and its about finding what works for us individually, be it a special shoe, splint, walking aid, or wheelchair or scooter. Its about using whatever is necessary to give us the best life possible.  

    Thanks for all your comments, it has been very interesting reading, and its always good to know we are not alone.

    Wish you all the very best.

    Noah
      
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