Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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1st Personal CRPS/RSD Story

The 1st Personal Story!

2020-03-11

First Personal Complex Regional Pain Syndrome Story

Finally after some online social media posts, on Facebook & Twitter, the first personal complex regional pain syndrome story has emerged from our Burning Nights CRPS Support Facebook community page.

Here is the first personal CRPS story from Chuck in the UK…

Hi first off I would like to introduce myself! My name is Chuck well Charles but you know, when I was born I nearly died from strangulation of my umbilical chord and I was pulled out of my mum with forceps!! In 1986 I was diagnosed with Diabetes Militias, Type 1 so from age 5 I have had to inject, because of my diabetes my immune system is shot so ever since my 7th birthday I have had to cope with M.E. as well. So a lot of time laying around with my body and brain not working properly.

In 2004 while I was working I slipped on a mini-disc player and fell 20 steps down, I chipped my ankle bone and the muscle pinged this off, I couldn’t get up but was heaped on the curb outside while a taxi was rung, nice huh? No ambulance just heaped on the curb like a bin bag!! 

I arrived at hospital and they took an x-ray it and then plastered my leg, the whole time the plaster was on my foot was painful but I thought it was just the chipped bone, eventually after two weeks they changed the cast to a walking cast and told me to walk on it as much as I could, only problem was I couldn’t put my foot down I told the Dr this when I saw him and got a shock when they removed the cast my foot was twisted and bright blue in colour!

I was told I needed physiotherapy, so off we went to the physio department , no appointments for six weeks, great! I got home and mum and dad came home from holiday, mum took one look at my foot and cried!!! I said I was told I needed physio, and that there weren’t any appointments available but luckily I had private insurance, so off we went to the nearby private hospital and saw the physio, in we went and we saw this lovely bloke who had been a physio for the parachute regiment. He took one look at my foot and said he was ordering x-rays and a scan of my foot and also that he wouldn’t touch it till I had seen a consultant. He said he knew what it was but couldn’t tell us until a Dr had seen us.

2 days later we were seen by a Dr and he said that I had Reflex Sympathetic Dystrophy now known as Complex Regional Pain Syndrome – CRPS. He said I needed physio and a pain block, we waited and waited for our pain block over two months and nothing then finally we got our appointment only one trouble my blood sugar had gone low before the procedure and as I was having the anaesthetic they couldn’t do it, so a night in hospital it was. They finally did they block and when I woke I was in agony it had made it worse, the idiots had injected into the foot itself!! He said OK we will do an epidural to give u some pain relief and then the physio can help u!! I was crying with pain nothing was touching it!! I kept buzzing for the nurse in agony and the epidural had numbed my right leg and not the left one, his answer to this put a stool under my right side so the epidural would go into my left leg epic fail, dad said this was stupid and rang a friend of his, he came in and said there is nothing we can really do!! GREAT!!! 

The nice nurse who had been looking after me had looked up CRPS on the web and said to me that she had found the best private Dr for this condition. We managed to get an appointment and he said I did have an extreme version of CRPS and that the twisting was due to this. He said I needed an epidural pain block so the physio could work with me and I could get some sleep!! 

I had so many procedures within 18 months it was ridiculous but somehow the pain went down and I managed to work unaided again and get back to work.

In 2008 I had a break down and I piled on the weight and I went from 17 stone to 24 stone, not good for my foot! I started an extreme exercise programme walking, cycling anything to try and lose weight I didn’t realise my meds and comfort eating were doing me damage.

In 2010 the CRPS came back in a big way I couldn’t walk, I couldn’t put a sock on I couldn’t have anything resting on my foot, I needed crutches to walk – yes the CRPS was back and this time even more extreme!! 

I rang the doctor and he tried an epidural – it did nothing, he said we could try a nerve block, this did nothing he said last ditch effort was to see if the medical insurance would pay for a Spinal Cord Stimulator, they said YES! So I went for it! I was so nervous I didn’t really like the idea of it, so I went into another hospital to have it done. They woke me up and turned on the stimulator, I screamed like nothing on this planet!! It was doing the opposite. It was making my pain worse. So they tried three other settings and again it did nothing but cause more extreme burning and pain!! He finally pulled it, I was in tears that it had failed. I was groggy from the anaesthetic but I needed the one person you can always depend upon – my mum!! She came in and we went home.

The doctor rang us two weeks later and said on the NHS side, he could try a Chlonodine and Ketamine infusion, but he said it was very dangerous substances I was in so much pain I just wanted it gone. we tried this block and it numbed my foot to be fair BUT it pushed the CRPS up into my knee!! My knee was now spasming!! Not good and after a week on the drip I was sent home. Only because they needed the High Dependency Units bed did they rush me to get up on my feet. I got up and my right ankle turned and with my immense weight the crutches broke I ended up on the floor!! I felt so stupid and no one could get me up, my dad arrived heaved me up and into a wheelchair and took me home!!!

That was 4 years ago since I walked properly.

Now I am in a wheelchair permanently and in pain permanently. During this period I also lost the sight in my eye due to diabetic retinopathy, so overall it has been a massive roller coaster.

This is my story so far. On the bonus side I have lost 7 stone so I’m back to 16 stone now.

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A very big THANK YOU to Chuck for allowing Burning Nights CRPS Support to post his personal CRPS story on the blog here on the website.

If anyone else would like to send us their personal complex regional pain syndrome story then please do get in touch with us. Please feel free to post, comment or share this personal CRPS story so other CRPS sufferers know there are other people in their situation and you are not alone.

Last Updated: 13/07/2019

LET’S SPREAD AWARENESS of CRPS! 
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About the Author
As the Founder of Burning Nights CRPS Support, I want to help all those affected by this devastating condition which includes those living with CRPS, their relatives, partners, carers and friends. I'm also barrister, advocate & have lived with Complex Regional Pain Syndrome (CRPS) since 2003. I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!

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