CP and pain

Ameliebaby2019

Hi 
I’m knew to the discussions
my names Naomi and I’m 34 mum to a 4 year old 

I was born with mild  CP (cerebral palsy) affecting my co-ordination and balance . To a lot of people or those that don’t know me ,do not see any physical disability but I do have my struggles 

I just wondered if anyone can share any experience with suffering lower back, leg and hip pain as a adult with cp I seem to be struggling with severe pain after physical activity in the lower part of my body especially my hip and thighs . I get anxious about discussing my difficulty with a gp due to not being taken seriously . I have walked slightly once sided my entire life and now wondering if this is causing issues and the reason for the pain . 

I’d be grateful to find out if others suffer with pain as adult and what can help 

Richard_Scope

Hi @Ameliebaby2019 (Naomi)

Welcome to the community.

You are not alone in 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.    

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 get 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 to UCLH Cerebral Palsy Service. 

You may also want to consider a referral to the Bobath Adult CP review service that was created with the support of Scope. 

Ameliebaby2019

Thank you Richard this is really helpful I had so much support as a child but as adult the support in the medical world seem to be lacking. So I’m grateful for discussion board such as this and to feel not so alone 

Richard_Scope

You are most certainly not alone! 

We're working hard to improve services for adults with CP like us, these things take time but we will get there.

I know you are very busy with your 4-year-old but do you have any exercise, physiotherapy/stretching?

Ameliebaby2019

I’m please to hear work is going into improving the adult services 

my struggles has been overlooked due to how mild my cp is and whilst I’m grateful to only have mordorate struggles they are a struggle obviously I find I’m tired due to being a parent but have found since hitting my 30s the tiredness and pain is so much worse and last longer 

I had physio a quite some years ago and was given exercises but to be honest it was so long ago I can’t really remember which exercises I should be doing 

Richard_Scope

@Ameliebaby2019, it might be a good idea to see your G.P. and have your iron and B12 levels checked too. Just to rule out other potential causes of your tiredness.

JudithL

Hi Amelia. My cp only noticeably affects my right arm. As I got older I found that causes serious issues of over use with my left arm. And certainly more aware of tiredness with aging. I found Alexander technique very helpful. I’ve also found physio helpful, especially neurophysio. I found my gp very willing to refer me, especially when I put it in the context of wanting to keep as active and independent as possible.And the physios have all been great. Swimming really helps me too.