Hi, my name is emma1975! I'm looking for advice on managing pain with CP

emma1975

Hello.

My name is Emma. I'm new here. I was hoping for some advice regarding managing pain please? I am 47 in Feb, I have slight cerebral palsy which I have had a few surgeries for as a child. I am seeing my physio regularly and have just been referred back to a constant for the first time in years. I am falling a lot and really stiff and awkward.  have always tried to get on best I can but lately the pain is unbearable. I have be prescribed Co-dydramol by the GP but it doesn't make a difference. I take baclofen which seems to help a little with movement, but I am really struggling with pain in my feet, toes, ankles and knees. I feel like nobody is listening.

Thank you in advance

Sandy_123

Hi @emma1975 welcome to the forum. Sorry to read that you are in lots of pain. It might be worth seeing the Dr again or a different one in the practice and see if they can give you anything different or the baclofen  again. Hopefully your consult can be helpful to you.
Meanwhile join in with the topics here, have a look around.

emma1975

Thank you 🙂 that's really helpful. My physio thinks I'm "remarkable" he says I astound him. I have tried to articulate that it takes maximum effort (which he seems to appreciate) but it is exhausting being in pain constantly 😏

Thank you so much, it's just nice to say it somewhere that gets it! 😄

Sandy_123

Your welcome, have a look around the site there's lots of articles about cp on here, dotted around.
Glad your physio is a good one altho, I've never had a bad one,  even if they put me through my paces. 
Lots of topics in coffee lounge also, under categories 

emma1975

Fab! I will do, thank you very much x

Ross_Alumni

Hello @emma1975

Wishing you a warm welcome to the community, I hope you are keeping safe and are well this morning, it's quite cold out there!

I'm sorry that you feel as though you haven't been listened to by the professionals in your life, that must be quite frustrating for you. Have you gone back to your Gp to explain that your current treatment isn't quite working for you? They might be able to suggest an alternative course of action.

We have a category on the community dedicated to CP, which you can find here, and there is also a virtual CP cafe that runs on Mondays, details for which can be found on this page. Please feel free to get involved wherever you would like, and I look forward to seeing you around.

Richard_Scope

Hi @emma1975

It's fantastic to meet you. You are not alone feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and a wheelchair and since I hit 40, I have felt the changes in my mobility and energy levels. 

There are things that you can do to help manage the changes in your mobility and pain. It sounds counter-intuitive, but exercise is very beneficial. Especially, low impact exercise like swimming. Any kind of movement at whatever level you can manage.  

 We CP folk use up a lot more energy than non-CP people, up to 5 times more because of the way we move or walk etc, this can lead to fatigue.  
 
The key is learning about your body and planning your day around that as much as you can. Plan the bigger tasks at the time you have the most energy etc.  There is also something called Post-Impairment Syndrome that is related to CP this refers to additional conditions that might be acquired by someone already living with CP. Here is an excellent blog post about it:  
What Post-Impairment Syndrome Means to Me  
What I would advise is that you book an appointment with you your G.P. (telephone appointments will work too) and talk to them about how your CP has changed. And getting a referral to a neurologist or neuro-physiotherapist. You can mention the CP Care Pathway which instructs G.P.s how and when to refer.  
 
I'm pretty much always around if you would like to talk further. We're here to support one another. Don't feel alone.