Hi! Has anyone else got complex regional pain syndrome (CRPS) or similar?

Hello I have just been diagnosed with CRPS, 2 weeks ago so I'm at the beginning of this journey. I just wanted to let you know that I understand some of the issues you have with this diagnosis 

Mine started after rupturing a ligament in my ankle after going over on it last July. I really wasn't expecting the diagnosis, I thought it might just need a clean out and the ligament fixing so it was a bit of a shock

I feel angry that's its happened to me and worried about the future. Its stopped me living my normal life and some days I'm really down. I'm trying to be positive and I need to adjust to the diagnosis and try to accept it and live with it not fight against it

Hi, 
I was diagnosed with Functional Neurological Disorder and Complex Regional Pain syndrome. I'm wheelchair bound and in pain constantly. Even slightest touch can cause severe pain, including water when I Shower. However the battle to get any support has been difficult. I was told by a pain specialist to stop pain killers, and to accept that I would be in pain, and be happy I was able to live. When I asked if  thought this is living a good quality of life, I was told we will refer you to a psychologist who will help you accept and cope better. 
The new NOT very "NICE" guidelines on chronic pain have just left GP's not ability to treat individual circumstances. 
It's a one size fits all approach, which focuses on the socio-medical problem of previous over prescribed opiates. 
Many things in the guidelines such as acupuncture are not available. Psychology support is limited and huge waiting lists. Will only focus on your behaviour around pain, not the causes. I found the links and some advice useful. However when you aren't able move for pain, it's difficult to live life and just accept it.

I was given antidepressants, pregabalin for nerve pain. Was given a patch, which I became severely allergic to.(which actually helped!) Had to stop, but they then refused to give any other analgesia.
Eventually following over 1 year of battles, and opinions I am on oral opiates, my pain , sleep, mood are improved, if not gone, better. 

My advice to anyone is speak openly to health professionals about the impact pain is having.
Don't let them tell you what you should do, feel, expect.

Pain is what experience,  and the impact to you is real. 

If I hadn't of fought, it was overwhelming and I could not have carried on. I was lucky to have family and strength. A physiotherapist who listened and a doctor who treated me as an individual, and not as NICE recommended as a class of patients who should all be treated the same.

Hi. My journey started 6 years ago when I got up off of the sofa and something 'popped' in my right arm. I went through a variety of tests and lots of physio, to be told that I had cubital tunnel syndrome. CRPS was mentioned but not diagnosed. My physio fought my corner and I had ulnar nerve release and transposition of the ulnar nerve in Sept 2021. Fast forward to 18 months ago and I began to get the same symptoms and issues in my left arm. Finally saw a pain consultant September last year and finally diagnosed of having compressed ulnar nerve in both arms, along with CRPS in both arms. I have taken all the nerve pain meds and now on the last one I can be prescribed for nerve pain, Nortriptyline. 
Every day is a pain day and the more I try to do the higher the pain level! 

I've started mirror therapy but I'm not sure it suits me, I have schizoaffective disorder and autism and my brain doesn't seem to understand this form of treatment. My foot is still very painful, goes ice cold, purple, bright red and like sunburn and a new issue, cramp and spasms. I still can't walk without crutches and wear a boot because I can't wear a shoe or bend my ankle.
I just want to go back to normal