Hi, my name is Semra! daughter has been diagnosed with CPRS

Semra

My 9 year old daughter has been diagnosed with CPRS, she is experiencing severe pain she has not attended school for 3 weeks, As she has been using crutches but as she keeps putting all her weight on right leg she is finding it hard to walk, as her mother it’s so hard to see my daughter suffering and watching her strength deteriorate..I am heartbroken

Bluebell21

Hi @Semra Welcome to the Community. I am so sorry your daughter is experiencing severe pain. Have you spoken to your GP regarding this to see what help he can give her. I am sure it must be heart breaking for you to watch her deteriorate and not be able to go to school. Please take care of yourself.

Semra

Hi bluebell21, thank you for replying back to me. Yes we are under the MSK team (Physiotherapist Paediatric and psychologist) they have been great, it was a fight at first as doctors were adamant her pain was due to trauma (my sister passing suddenly) At the moment it’s hard seeing her in so much pain I pray it will pass soon. Hope you’re well xxx

Albus_Scope

And it's a big welcome from me too @Semra 😁

I'm so sorry that your daughter is struggling, but it's great to hear she's receiving good care, that can make such a huge difference.

Bluebell21

I am not too bad thanks @Semra

Semra

Hi Albus_Scope

Thank you for your warm welcome. She is really struggling at the moment she does have a great team of doctors, NHS has been great!! I hope in time she will be able to walk again.

Semra

I hope it’s ok to ask, how are you all coping/living with CRPS?

What age was you diagnosed? and what medication worked for you.

X

Broreb1981

I have CRPS in my ankle. I'm seeing a crps specialist. CRPS is a hard diagnosis to get and needs to be done by a specialist, if someone has just mentioned it could be this then you really need to be sure it's confirmed correctly and make sure you get all the correct help not just physio.

She should have met the Budapest criteria to be diagnosed, has this been done?

What other symptoms does she have?

Don't let them say they think she has this, as you will likely be given help for a while then they will say there is nothing more that they can do

Semra

broreb1981 My daughter has been diagnosed by paediatric also neurophysiology. I am medic geek I always make sure I read (library) before I give her any nerve killer

Semra

I really would like to hear your journey with this awful disease, also what helped with the pain

Semra

broreb1981 As I previously mentioned, physiotherapist said it’s psychological..that diagnosis did not sit well with me I did not accept it and I kept pushing and fighting for my daughter…Sadly she Suffers with CRPS a condition I never heard of she is now wheelchair bound. I will keep researching and keep fighting for my love