Hi, my name is Freddie62! I have a chiari malformation and syringomyelia

Freddie62

Hi.I have a chiari malformation and syringomyelia. I was diagnosed  2018.It has been a struggle  to say the least. I can not work anymore due to the constant  pain everyday.I had to claim universal credit because I couldn't  work 

poppy123456

Have you reported your health condition and sent in fit notes to support that claim? Doing this will start the work capability assessment process off.

L_Volunteer

Hi @Freddie62. Welcome to Scope's forum. It is great to see you have joined us. How are you at the moment?

Thanks for sharing a little with us about what you have experienced and continue to experience. It helps us to hear you a little clearer.

Please don't hesitate to let us know if we can do anything to support you. We are all here for you and listening to you 

Tori_Scope

Welcome to the community @freddie62 Thank you for joining the community, and for telling us a bit about your situation.

I'll tag @chiarieds in here, in case she'd like to connect with you regarding your Chiari malformation.

Are you receiving support to help you manage your conditions at the moment?

chiarieds

Hi @Freddie62 - & welcome to the forum. Sorry, I have only just seen @Tori_Scope 's tag, & am certainly happy to chat with you about Chiari 1 Malformation & syringomyelia, which is often associated with Chiari.

As Tori knows, my family has been affected by Chiari 1 Malformation (in our case associated with Ehlers-Danlos Syndrome). Chiari 1 Malformation certainly causes me more chronic pain than 'just' Ehlers-Danlos Syndrome.

The most up to date info I've found, & have used for many years, is the American Syringomyelia & Chiari Alliance Project's website: https://asap.org/ They also have very informational videos for patients from their previous conferences here: https://asap.org/conferences/past-conference/

I look forward to hearing from you.

Hannah_Alumni

Hello @Freddie62

I can see many people have reached out I just wanted to let you know I've popped your post into our Universal Credit section of the forum, in case you had any more questions or queries.