Degenerative back pain complicated by EDS and heart arrhythmias

Brainer70

Hi , I am looking for resources, people experiencing similar issues and support to improve my understanding and options in respect of degenerative back pain complicated by EDS and heart arrhythmias

steve51

Hi @Brainer70

Good Afternoon & Welcome it’s great to meet you today.

I’m one off the Community Champion’s here at Scope.

I have also got chronic pain 24/7.

We have got some other members in similar situations.

 Hi @Richard_Scope
  
Can you please help me with this post???

Many Thanks.

@steve51

chiarieds

Hi @Brainer70 - Welcome to the community & thank you for joining. I have some understanding, as I have the hypermobile type of Ehlers-Danlos Syndrome + neurological problems that can be associated with this. There are quite a lot of people in the community that have EDS. Have you looked at our UK EDS Support group? Please see: https://www.ehlers-danlos.org/   As excellent resource there is the GP's toolkit, which will be updated this year: https://www.rcgp.org.uk/eds

The Ehlers-Danlos Society (https://www.ehlers-danlos.com/), which is based in the USA is another useful resource, & there's a link to past webinars viewable on YouTube: https://www.youtube.com/c/TheEhlersDanlosSociety

These are with international specialists & are for patients.

I hope some of this helps as far as EDS at least goes. Here on Scope there's also some info on coping with pain. See: https://community.scope.org.uk/discussion/69983/managing-pain-during-isolation#latest   & scroll to the top of the thread.

This is a friendly & supportive group, so please ask any questions, & let us know if we can help in any way. Join in with any discussions of interest, & chat here too, or in our virtual 'Coffee lounge.' See the links at the top of this page.

Chloe_Alumni

Hi @Brainer70, just wanted to say welcome to the community! Please do have a look around and let us know if we can do anything else to help.