CRPS condition.

[Davek723]

Hi there. I ve been living with this since around 2000 diagnosed 2003/4. So to late to stop any spread. Ive been written about in the british medical journal due to the affect being in all four extremities. So all limbs . Very rare so in a way im special lol. Ive taken all the drugs from morphine ketamine lignacane infusions gabapentine pregabaline etc etc etc huge list and lots of trial drugs in a teaching hospital. Here is my experiences

I have had all of the symptoms you mention

And most that get mention on here by others. I would say that since i withdrew from all medication that i can control my symptoms way better.

Given that crps is the nervous system that is not processing correctly the processor bit

If you like , i made a decision to go drug free and see if i could control this better without.

So after alot of trial and error i found tools that worked for me .

I spent the best part of 10 yrs figuring out what my triggers were and how to stop them .

What caused flair up s and again working on techniques to prevent flair ups

This is by far the best my life has been since i was diagnosed, yes i do still have pain and symptoms etc but managable. And i guess this is the word . Managable.

I know work as a lived experience pain management expert. I help lots of people.

And also work with young adults who are struggling with mental health issues.

Again due to my experiences .

So please dont loose hope.

All the very best.

Dave

[AuntieH]

That was very nice and thoughtful to share with all of us! God bless!