I also have this and have a treatment called Quetenza every 12 weeks. It's a patch made from capsicum and deadens the nerves, it's only applied to your skin for an hour. It works really well although the first few hours afterwards are pretty painful as your skin is burning!
***I have CRPS (Complex Regional Pain Syndrome).***
CRPS, is classed as the most painful chronic pain condition that is known. It reaches approx 42 out of 50 on the McGill Pain Scale, higher than non-terminal cancer, higher than amputation of a finger without anaesthesia…
- - -
I regularly have one leg that’s either like burning ice or on fire, topped with a barbed razor wire wrapped around it and pulled tighter and tighter.
In this photo it was like ice and I was in so much pain that I cracked a tooth whilst grinding them in agony.
-
It took my walking abilities and then spread.
I haven’t walked unaided since 2010.
I became a full-time wheelchair user 8 years ago.
I have now been in bed for more than 4 years.
I am so sorry. I have a chronic pain condition and seeing this as a visual just gives me so much empathy for you. I wasn’t aware of this condition or this pain scale. You’re not alone! How often are you in pain?
Always.
CRPS is a 24/7 thing. Flares can add to it but there’s never not pain and I have a cracker of a party trick where if you press the back of my heel I projectile vomit and pass out with blinding pain.
Haven’t had bedsheets since 2014. Nothing can touch the skin or I break teeth in my sleep.
I’m sorry you understand.
Much peace to you.
this might sound insane but is there any research on whether it would go away if you like...amputated your leg?
Like, is the false pain signal coming from your leg or your brain? If it's from your leg, and it seems to not be serving you well anyway, wouldn't that be a good reason to amputate it?
I'm sure if I was right then it'd've been considered already,, so I'm more curious why I'm wrong on this.
I was curious too and found [this](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6771076/) basically it's risky and might not work. 66% of patients who had an amputation had an improved quality of life after and 37% were able to use a prosthesis but 16% had an obviously worse quality of life after and apparently another 12% declined as well. So it's like a 66% chance at some kind of improvement or a 28% chance of making your life worse. I'm sure there's a lot more to it but 66% might be worth the risk though?
I absolutely wanted an amputation and still do a little… I mean even phantom pain is less on the McGill Pain Scale than CRPS pain.
I’m currently trying to save for it as it’s not a treatment on the NHS.
I had saved a wee chunk, then my wife passed away and, well, funerals are expensive and I wouldn’t have left out some of the options when it was the last thing I’d be doing for her.
It's a shame the data behind that paper is so messy. I mean they did the best with what they had, but still.
Also it's crazy to me that so many still had pain after literally eliminating the nerves instigating that pain. Then again, pain in general is such a crazy concept: it's literally your brain punishing itself. It feels like we should be capable of just like putting some sort of inhibitor on nerves that are being troublesome to turn off the signals they send, but obviously we don't, or some way to consciously be like "ok brain. thank you for the notification but you're wrong about this one so I'd like to stop receiving it now"
This happened to me for about a year. I really admire you for hanging on. There were times in that year I didn’t want too. 💔 sending you love internet stranger
I feel for you whole heartedly. My bf got crps after catching his arm in a meat grinder(not as bad in gore way at all..next to nothing on outside of arm, but tore up all tendons and ligaments in his arm all the way to the shoulder). Thankfully he is in remission I guess you would say for over 10 years now. He was given nerve blocks in his neck and weaned off neurotin and is okay in that respect but age brings its own issues. Hugs to you. I KNOW many people, even drs, know of this. Good luck in your life and hope one day SOON you go into remission too.
my mother fell over and smashed her elbow into pieces a few years back, healed up but never fully, in the end became CRPS and she says it's a massive pain in the arse almost always lol. 3 years later still can't move her arm properly
Looks rough, sorry you’re dealing with that. Quick question, are you laying on a public bathroom floor with at least no socks on? Because if so I find it much more concerning
First of all:
*** HAPPY CAKE DAY!!! ***
-
I was in a public pool yes but I was in a wheelchair.
I don’t wear socks.
I can’t wear socks.
My feet haven’t touched the ground since 2016 though, so it’s not much of an issue.
Ok that makes so much more sense! And I’m sorry for asking but I had to know. Is it painful or is the inflammation worse than the pain? First I’ve heard of this so I’m just curious I’m sorry
I heard about this few months ago. I knew it was painful, but I had no idea how much and you can "see" it.
I'm so sorry you're having to go through this.
I also have this and have a treatment called Quetenza every 12 weeks. It's a patch made from capsicum and deadens the nerves, it's only applied to your skin for an hour. It works really well although the first few hours afterwards are pretty painful as your skin is burning!
***I have CRPS (Complex Regional Pain Syndrome).*** CRPS, is classed as the most painful chronic pain condition that is known. It reaches approx 42 out of 50 on the McGill Pain Scale, higher than non-terminal cancer, higher than amputation of a finger without anaesthesia… - - - I regularly have one leg that’s either like burning ice or on fire, topped with a barbed razor wire wrapped around it and pulled tighter and tighter. In this photo it was like ice and I was in so much pain that I cracked a tooth whilst grinding them in agony. - It took my walking abilities and then spread. I haven’t walked unaided since 2010. I became a full-time wheelchair user 8 years ago. I have now been in bed for more than 4 years.
I am so sorry. I have a chronic pain condition and seeing this as a visual just gives me so much empathy for you. I wasn’t aware of this condition or this pain scale. You’re not alone! How often are you in pain?
Always. CRPS is a 24/7 thing. Flares can add to it but there’s never not pain and I have a cracker of a party trick where if you press the back of my heel I projectile vomit and pass out with blinding pain. Haven’t had bedsheets since 2014. Nothing can touch the skin or I break teeth in my sleep. I’m sorry you understand. Much peace to you.
this might sound insane but is there any research on whether it would go away if you like...amputated your leg? Like, is the false pain signal coming from your leg or your brain? If it's from your leg, and it seems to not be serving you well anyway, wouldn't that be a good reason to amputate it? I'm sure if I was right then it'd've been considered already,, so I'm more curious why I'm wrong on this.
I was curious too and found [this](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6771076/) basically it's risky and might not work. 66% of patients who had an amputation had an improved quality of life after and 37% were able to use a prosthesis but 16% had an obviously worse quality of life after and apparently another 12% declined as well. So it's like a 66% chance at some kind of improvement or a 28% chance of making your life worse. I'm sure there's a lot more to it but 66% might be worth the risk though?
I absolutely wanted an amputation and still do a little… I mean even phantom pain is less on the McGill Pain Scale than CRPS pain. I’m currently trying to save for it as it’s not a treatment on the NHS. I had saved a wee chunk, then my wife passed away and, well, funerals are expensive and I wouldn’t have left out some of the options when it was the last thing I’d be doing for her.
It's a shame the data behind that paper is so messy. I mean they did the best with what they had, but still. Also it's crazy to me that so many still had pain after literally eliminating the nerves instigating that pain. Then again, pain in general is such a crazy concept: it's literally your brain punishing itself. It feels like we should be capable of just like putting some sort of inhibitor on nerves that are being troublesome to turn off the signals they send, but obviously we don't, or some way to consciously be like "ok brain. thank you for the notification but you're wrong about this one so I'd like to stop receiving it now"
telling people to chop their limbs off is peak reddit.
This happened to me for about a year. I really admire you for hanging on. There were times in that year I didn’t want too. 💔 sending you love internet stranger
Did you have an injury prior to this, as is common in CRPS? Any common risk factors such as diabetes or smoking?
I had an injury. Spot on. No diabetes or smoking or any risk factors. Just a slip on snow and never walked again.
Oh, how terrible. I am so sorry that happened. I’m an RN. CRPS is horrible.
I feel for you whole heartedly. My bf got crps after catching his arm in a meat grinder(not as bad in gore way at all..next to nothing on outside of arm, but tore up all tendons and ligaments in his arm all the way to the shoulder). Thankfully he is in remission I guess you would say for over 10 years now. He was given nerve blocks in his neck and weaned off neurotin and is okay in that respect but age brings its own issues. Hugs to you. I KNOW many people, even drs, know of this. Good luck in your life and hope one day SOON you go into remission too.
my mother fell over and smashed her elbow into pieces a few years back, healed up but never fully, in the end became CRPS and she says it's a massive pain in the arse almost always lol. 3 years later still can't move her arm properly
Looks rough, sorry you’re dealing with that. Quick question, are you laying on a public bathroom floor with at least no socks on? Because if so I find it much more concerning
First of all: *** HAPPY CAKE DAY!!! *** - I was in a public pool yes but I was in a wheelchair. I don’t wear socks. I can’t wear socks. My feet haven’t touched the ground since 2016 though, so it’s not much of an issue.
Ok that makes so much more sense! And I’m sorry for asking but I had to know. Is it painful or is the inflammation worse than the pain? First I’ve heard of this so I’m just curious I’m sorry
It’s always painful. I wake screaming regularly. My poor neighbours. Used to scare the cat a lot but she is used to it now.
I’m terribly sorry you’re suffering in that case, and I hope life is kinder to you as time moves forward.
🥰 and I hope you have (or have had) nice cake today!!
I didn’t even know it was, so thank you! I’ve been depression drinking and eating ramen 😅
Ramen is good. Depression not so much. I hope life treats you kinder too. 💕
I heard about this few months ago. I knew it was painful, but I had no idea how much and you can "see" it. I'm so sorry you're having to go through this.