Living Positively with Cerebral Palsy
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Pain that does not go away :(

Hi, I'm 18 years old and have mild cp. I've been having pains everywhere; lower back, legs, arms, feet and even fingers. Is this normal?

I have been to physio and taken painkillers but they don't seem to work :( Due to this I am feeling very low and miserable. I would really appreciate it if anyone could give me any advice on what to do.

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Hi asp,

Sorry, I can't help. I too have mild cp - but I have no pain (and I'm now a 60 year old!) The only suggestion I can make, that seems to have benefitted others with cp, is to try Alexander Technique.

John

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I am 28 I have mild ataxic CP and yes there are times and days I have random pain in different joints, the only thing I've found to help is supports, rest or walk through the pain. Try not to get down about it. I had pain in my hip today and I was deciding what was best to do so I went for a walk into town and it improved, just depends what works but I find sitting or resting too long I get stiff and in pain but sometimes you need a day of rest just to recover. Have you done more than normal recently?

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Thanks for your reply, the pain just comes and goes, but does not get any better whether I rest or walk. I've been quite relaxed recently. What kind of supports help you?

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Yeah mine is the same sometimes you can't do anything and its still there, i had bad leg pain a few weeks ago for over a week and i thought i may have to go doctors but it disappeared again after about 8 annoying days of constant pain! No idea why it happened but it must be the CP. Go to a doctor if you feel you may need medication. When i was in a wheelchair i was taking ampitripuline but i had a reaction to it so had to stop it and there wasn't anything else that helped painkiller wise so they just told me i had to get on with it so that's what i try and do. I just bought some wrist and ankle supports from lidl or aldi can't remember but if I'm having bad ankles or wrists the supports normally help somehow but you can't wear them longer than 3 hours and sometimes it works and its gone or the pain is still there :( I've also got deep relief cream which is like voltarol but i find works much better. The problem is its hard to find the part that's hurting which is difficult with the cream because you need to get it on the sore points. Try and see a doctor and see what they say. That's good if you've been relaxed just not the pain :( hope it improves soon

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Well I guess I just have to wait as I am on the waiting list to see a rheumatologist in two months as nothing else works :( I was given the strongest form of ibuprofen but that still didn't work, I've also tried voltarol but it doesn't relieve the pain. Thank you so much for your advice I hope you get some relief soon

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Thank you :) it is a likelihood that it could be rheumatoid because with CP that is unfortunately something that can happen. Hope they can help you further. Keep me posted please

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How did the rheumatologist go?

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Hi there! I am a journalist filming a TV documentary about Cerebral Palsy for my dissertation - Looking for multiple case studies about how funding is difficult and how people are coping. It would be nice to see some case studies of real people getting through their difficulties and to speak out about their experiences to promote the cause and help other people get through it. If this is something you would be interested in helping me with feel free to get in touch with me.

Email: shannon-stevenson@hotmail.com

Hope all is well!

Best wishes,

Shannon

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Shannon not sure if your still looking for people but I'm willing to help if you need me to

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Hi! That would be great, the more help and different cases the better. Where are you located? If you could email me about your location and more about your condition then hopefully we can arrange an interview. I start filming from now up until April so there is plenty of time for organisation.

Cheers, Shannon

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Hi Shannon I too am willing to take part if you still need case studies 😀

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Sorry just seen that this was a year ago I do apologise!

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Hi there

So sorry to hear you are in such pain. I assume, as you say you have mild CP, that you walk? Do you walk with any sort of difficult gait or limp? Sometimes, it can be part of the reason why you get so much pain. However, having seen how many parts of your body you are having pain, I think it's important for you to go back to your doctor and ask for more tests because I don't see how your CP can be linked to pains in your fingers ( unless your hands are affected?)

When you have something like CP, GP's are very quick to put everything down to that. Let me tell you a story.

Many years ago, I went to a GP at our practice and said that I believed I had a kidney infection. I'd had them before, I knew that pain was different to anything muscular. I was used to extreme muscular pain all over my body, so I knew the difference. I had gone prepared, and taken a sample with me. I explained my symptoms, to which she replied, "Oh, it won't be a kidney infection it will be to do with your posture." As you will expect, I disagreed! I told her that I knew the difference, that I've had a kidney infection before and this felt exactly the same. At which point, she stood up and started to mimic my posture. (I used crutches at the time, and leaned forward slightly when I walked). However, I persisted and asked her to test the sample anyway. Begrudgingly, she did and she had her back to me while she carried out the test. 30 seconds later she said, without turning, "Well done doctor, you have a kidney infection.

I'm 41, and all these years later I have never Forgotten how it felt to have been dismissed in such a way. I was dismissed on two levels. One, because I had a disability and surely every ache and pain was down to that? And two, I had a disability, therefore I didn't know the difference between kidney pain and normal muscular pain!

It is vitally important that you don't let every health professional put everything down to your CP! If you have an earache and the temperature, are they going to tell you that must be to do with your posture? You have the right to medical investigations the same as anyone else! If physio hasn't helped you, then there is something else that needs to be done.

The first thing you need to ask yourself, as I said above, is whether or not your walking COULD have something to do with it, but as I say, I can't imagine why that would affect your fingers!

The other thing to consider, is do you have extremely cold hands and feet? I suffer with Raynaud's disease and as a result, my feet are extremely painful. If you do have Raynaud's, then your feet will pretty much always be cold, a purpley red colour, and be perhaps more painful as they warm up. You can also get what they call a Raynaud's attack, as a response to stress. Your fingers are more likely to go white with cold, and it does take quite a while to get the colour back and sometimes it will feel numb. I also have recently discovered through the power of Dr Google and piecing all the symptoms together, that it's possible that I have peripheral neuropathy in my feet, which can be caused by many things, but includes pressure, which would work for me, because I have extreme spasticity that goes down my leg and into my foot, particularly the right one which is the most painful. Obviously, I need to get a proper diagnosis, but all the symptoms fit, and I spend enough time at the GP as it is!

Please do come back and let me know if any of this Rings true. I would be most interested to know how you get on with following this up. It's ok to put up with it once you have explored every Avenue.

Good luck and best wishes

Hopesearcher x

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