Work, Doctors, Pain and CP

Eve53

Hi there, I don't post much, but often browse the community posts. I'm 26 and have spastic diplegia cerebral palsy.
I've been getting very frustrated recently with managing to get through everyday tasks because of pain and fatigue. The pain and fatigue is nothing new to me, but I'm still relatively new to working (4 years or so). 
I've tried to make working full time as manageable as possible, but it hasn't been sustainable and so I took the decision quite recently to resign due to the negative impact it was having on my mental health. I do however really miss my job, and I have been frustrated over the past year because I have wanted to keep my job but don't feel like I've had the support to do this.
On top of this, I have been under pain management, which has been awful for me. One of my goals was to get out more, but because of increased pain with standing and walking I have not been able to do this. The pain management team's method of helping me realise my goal was to just simply tell me to step outside and go out! I'm also not too keen on being told the pain is because of my thoughts and depression, and I recently saw a psychiatrist who agreed that the pain and isolation has in fact caused the depression.

Sorry for the long post, but is anyone else going through something similar? 

Richard_Scope

Hi @Eve53
I'm really sorry to read that you are experiencing pain and had to give up your job. I know how frustrating that can be. Would your employer not make reasonable adjustments for you?
I don't have much experience with Pain Management clinics but I do know that solutions can be trial and error and the level of service is a post code lottery. I do know that your physical pain is not psychological! I experience quite a lot of pain in my knees.
A significant proportion of people living with CP also present with a secondary impairment known as "Post Impairment Syndrome". Often, the secondary impairment can be caused by the way we move and the tightness of our muscles.
I will include some information on Ageing with CP and Post impairment Syndrome that you can look at and discuss with your GP.
You are most definitely not alone in your experiences and we are her to support you.

Chloe_Alumni

Hi @Eve53 and thank you for taking the time to share this with us all. I'm really sorry you are struggling more with pain and fatigue- unfortunately I can relate to this one! @Richard_Scope has given some great advice but I also wanted to emphases that the pain you feel is real. I'm sorry the pain clinic don't appear to be very helpful. I've had very mixed experiences myself. Please do keep us updated  

emmarenshaw

Hello @Eve53 welcome to the community. So sorry to hear you’re in so much pain.  I have CP as well pain management was so hard for us as a family.. It’s a wonderful community here so feel free to let us know if you need anything or have any questions. 

Eve53

Thanks for your replies. It's comforting to know that other people are in similar situations as me.
I've had a read of Post Impairment Syndrome, and will definitely speak to my GP about that this week. Will keep you updated.

Chloe_Alumni

Hope it goes well @Eve53! Please do keep us updated and all the best with the appointment!

Eve53

So my GP ended up referring me to neurology, who won't accept the referral - I was seen last year by them and they feel I'm best managed in the pain management department. I've actually been discharged from the pain management consultant, psychologist and physiotherapist, but am due to see the occupational therapist again soon. Im getting a bit frustrated, as nobody seems to want to help me live my life to the fullest. 

Chloe_Alumni

Hi @Eve53, it must be so annoying when you have been past from person to person! I hope your occupational therapist is helpful and able to make recommendations. Did you find pain management helpful? 

Richard_Scope

Hi @Eve53
That is incredibly frustrating and I can empathise. It shouldn't need to be the case but you have to keep badgering them until they give in. That has been my experience anyway. What was the justification for discharging you from all of those departments?

Eve53

I didn't find pain management helpful, and was discharged because there was 1 further treatment to try which was the only medication I haven't tried. I declined, as I had tried a similar medication in the past, which didn't help.

I really don't want to go back to see this occupational therapist - every time I've been seen, I'm told to just go out, or stay indoors doing puzzles! My psychiatrist recognised that I have the get-up-and-go mindset, but I'm sure the OT thinks it's a psychological problem of not wanting to go out. 

Not really sure what to do next. 

Richard_Scope

Hi @Eve53
I'm afraid it may be a case of starting the referral process all over again. This is something I had to do in order to find somebody who finally dealt with my issue. It is incredibly frustrating. 

lozzer25

Eve53 said:

Hi there, I don't post much, but often browse the community posts. I'm 26 and have spastic diplegia cerebral palsy.
I've been getting very frustrated recently with managing to get through everyday tasks because of pain and fatigue. The pain and fatigue is nothing new to me, but I'm still relatively new to working (4 years or so). 
I've tried to make working full time as manageable as possible, but it hasn't been sustainable and so I took the decision quite recently to resign due to the negative impact it was having on my mental health. I do however really miss my job, and I have been frustrated over the past year because I have wanted to keep my job but don't feel like I've had the support to do this.
On top of this, I have been under pain management, which has been awful for me. One of my goals was to get out more, but because of increased pain with standing and walking I have not been able to do this. The pain management team's method of helping me realise my goal was to just simply tell me to step outside and go out! I'm also not too keen on being told the pain is because of my thoughts and depression, and I recently saw a psychiatrist who agreed that the pain and isolation has in fact caused the depression.

Sorry for the long post, but is anyone else going through something similar? 

I'm in limbo too was diagnosed with mild spastic diplegia when I was 25 which has been thrown into question again as they think it's in my head pyschosomatics they call it which I do not believe I have had to have another mri to find out if it is or not