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Health

aimes29aimes29 Posts: 102Member Listener
edited October 2014 in Cerebral Palsy
Hi. I'm 35 and has athetoid cp. Over the last 10 years have developed pain everyone. Wondered if problems with the stomach eg. Constipation, IBS, acid reflux, feeling sick is known to be more common with aging with cp.

Replies

  • NoahNoah Posts: 430Member Pioneering
    I'm no doctor, but I have never read anywhere that the problems you describe are more common with aging and CP. It maybe worth booking yourself an appointment to see your doctor. There is some helpful information on aging and CP on this website and well worth a look. Let us know how you get on, hope things improve for you.
  • NoahNoah Posts: 430Member Pioneering
    Pain as you get older is very common, this is because we tend to put a lot more stress on our bodies, than an able-bodied person. Good diet, good sleep routine, exercise, is important for everyone, but particularly those of us that have CP. What areas of your body are in the most pain? Have you found anything that helps relive it?
  • milomilo Posts: 165Member Pioneering
    I'm 39 and have had IBS, Acid reflux etc for past few years. Always thought it was due to gall bladder surgery a few years ago, until I was told by my neurologist that he had seen a number of adults with CP who had similar symptoms. I now take lanzoperole daily to protect my stomach from the cocktail of medications i'm on and it has had the added effect of drastically reducing acid ( nice to have a side effect that works in my favour for once). Would be interesting to know if these symptoms are linked to CP though.
  • aimes29aimes29 Posts: 102Member Listener
    Thank you for you replies. Have pain in all my body, been told it's neuropathic pain and basically need to learn how to cope with it. Been to doctors, several have limited knowledge of cerebral palsy.
  • milomilo Posts: 165Member Pioneering
    I've been told similar things about neuropathic pain. Sometimes I wonder if they use it as a get out clause as there seems to be little specific knowledge on the problems associated with ageing and cp.
  • aimes29aimes29 Posts: 102Member Listener
    I often wonder that myself
  • NoahNoah Posts: 430Member Pioneering
    Interesting, I was once prescribed pain relief that was particularly for pain that is not understood. I decided not to take them, and so pleased I made that choice. I can't remember what it was called. Sometimes it can feel like a doctor, particularly one that doesn't understand CP, is just trying to fob you off with, take this pill and go away. rather than trying to get to the route of what is causing the problem. My experience of people with CP, suggests that most of us have a very high tolerance of pain, as pain is something we have had to live with our whole life. Rather that an injury or accident. I remember each time I have had an accident due to falling over badly, burning myself, cutting part of my finger off, or falling off my bike! When I have been in hospital or A&E. The doctors treating me have commented that someone with my level of injuries would normally be on Morphine by now.....! and would I like some!! Each time I refuse. Guess pain is a very individual thing tho, and not easily understood by others. It is also quite invisible to most people. Something that I have found to very effective for pain relief is ibuprofen gel, max strength from boots. it means that you can target the areas that hurt the most by massaging it in, rather fill your whole body with meds! Works well for me. I also see my osteopath especially when things are really bad, he is excellent and helps me understand my whole body better and what is effecting what, and I take an active approach to Orthotics, as I know how they can make pain worse when they are not setup properly. I'm also about to have a sauna installed at home as I find these really help, and understand they are good for people that put a lot stress on there joints.
  • aimes29aimes29 Posts: 102Member Listener
    Does any know if herbal remedies such as Echinacea, Arnica helpful in reducing spasms?
  • milomilo Posts: 165Member Pioneering
    Not sure about herbal medicine. My consultant recently put me on dopamine as he thought I may have dystonia spasms which can respond in some cases to dopamine therapy. Unfortunately it seemed to make things worse and I've had to come off it after losing all movement in my legs for upto an hour at a time. My legs don't work too well at the best of times, but to lose all movement was frightening.
  • NoahNoah Posts: 430Member Pioneering
    There is some interesting evidence that Magnesium can help treat muscles spasms. A word of warning tho, always consult with a professional first before starting any form of treatment. A topic for maybe another discussion or study would be diet that can help with managing CP. I have recently discovered beetroot juice.
  • aimes29aimes29 Posts: 102Member Listener
    How have you found beetroot juice helps?
  • NoahNoah Posts: 430Member Pioneering
    Still very early days for me, but it certainly seems to help improve my stamina, and my asthma. Lots of athletics are using it. Google beetroot shots. There is lots of research being done on it at the moment, worth looking it up on the web.
  • NoahNoah Posts: 430Member Pioneering
    Anything safe, that improves stamina is a good thing for people with CP as we use a huge amount of energy to do everything and get very tired.
  • milomilo Posts: 165Member Pioneering
    Yeah, I read that we use between 5 and 8 times the normal amount of energy for walking etc
  • aimes29aimes29 Posts: 102Member Listener
    Thank you, any information about things people find beneficial helps as often feel alone. I got prescribed antisickness meds 2weeks ago and they made my spasms worse, still trying to recover.
  • milomilo Posts: 165Member Pioneering
    Mmm same here after dopamine, at this point I'd be happy to be back to the way I normally am, at least I know what to do then
  • aimes29aimes29 Posts: 102Member Listener
    Any advice in how to reduce spasms ie. what foods help?
  • milomilo Posts: 165Member Pioneering
    No, would be interested myself as I'm now on big doses of gabapentin and feel doped up most of the time!
  • NoahNoah Posts: 430Member Pioneering
    What foods etc help would make a interesting discussion. Maybe there is a dietitian on the forum that can give us a few pointers?

    One thing I do know, is how important it is to eat well, good quality food, not too much processed food. Fresh is best where possible. We have to eat well as we use tons of energy to do everything.
  • lucey5877lucey5877 Posts: 2Member
    edited October 2014
    I am of the opinion, there is power in both knowledge and numbers. There are many ways to increase either general or medical , awareness in aging and cerebral Palsy or any other disability. one is to collect organize and publish the information. There are many creative and empowering ways to do that, I hope that this post can generate some creative Ideas. Here are some of examples, by the way I got both of these for some documents online. Creating a book or a series of books,that are filled with personal accounts of peers with like disabilities and there personal journey in the aging process is one. Community round tables could also help to gather information, assess need and help develop peer to peer support and other services or adaptions is another possibility . this particular autobiography offers hope and encouragement. www.wi-bpdd.org/.../2010/OnePersonsJourneyAgingCPCollection.pdf
    This one offers a model of round table discussion. www.who.int/mental_health/media/.../21.pdf
    Just a thought. This is an encouraging way for every one to help others, Maybe even make small strides toward increased medical awareness or increased treatment options.
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