I'm in rural Kentucky. A doctor refused to change my cast and caused CRPS. Now I have been left flapping in the breeze. The pain is unbearable sometimes. As long as I have dogs, I will fight. But every single day I either want to die or cut my hand off. To top it off, I can't seem to get ANY help at all. I'm given drugs that do not work and the big blow off. I will never trust another doctor as long as I live, which may not be that long.
I had a similar experience where it was set w no anaesthetic and showed it wasn’t aligned but nobody cared. Went to another state, saw a different surgeon who explained it was set the wrong way. Have had 2 ops, it has helped as I can at least use my hand now. Still have some pain but not the intense hornets nest of burning that drove me insane. I hear and felt everything you’re saying. Ketamine infusions also helped.
22:00 Ground Hog’s Day on repeat! I’ve been warrior-ing CRPS since 2012 and this is all I can say to someone that just can’t get there head around how can someone survive horrid pain 24/7/365. The Ground Hog’s Day movie, but literally every singe minute of every day. There is no break from the pain.
Thank you . I read everything I can and listen. I’m 6 months in off diagnosis and it’s horrible. But I’m a warrior and hope for the best . Thank you 😊 take care
I’m so glad more Doctors are talking about CRPS, I’m going on almost 17 years since diagnosed, upper extremities, started with crushed injury to my right hand. I have done every treatment available for condition, the way I describe mine feels like lava, the burning is so intense and the symptoms are so debilitating, when I get a really bad flair my brain feels like the filaments on a light bulb vibrating really high and very fast I can hear it inside my head, see very bright flashes that look like as if they coming out from my eye lids and then I hear a loud click my whole body jerks I go completely blank on my brain and my brain slowly stars booting up again slowly, lots of brain fog and disorientation, my symptoms sometimes are mildly under control, they always comeback with vengeance, I had a spinal column stimulator that was removed after 5 years, the incisions scar tissue burns now, I get put under when I get epidurals and after a week the area they injected burns and throbs for months, if I get a mammogram the pain last for month, blood work the area they put the needle in feels as if limb is falling off from the pain, mine keeps worsening and it has travel to my feet. I just started a treatment with a thera-laser, I had 6 sessions so far and it help with my spine, my spine always felt as if lava was the spinal fluid flowing in it, is no burning like that since first treatment but the other symptoms continue, my skin burns, also extremities get freezing cold, to many symptoms to list. The worst of my complains is that I don’t know if I’m sleeping or awake, I smile when I’m with people but my insides are constantly screaming so loud from the pain I can hear a word anyone else is saying, that’s life every day for someone with CRPS. I love that more doctors are making videos and there’s more awareness about it and like I say to my pain management and any physician I get a chance to tell, when I said you have no idea what this is like or feels like, I mean it, and other patients with CRPS will agree. I have 4 children many decades ago, 2 without epidurals, labor pain will be a walk in the park.
I definitely found Ketamine infusions helpful with the burning. My wrist was not set properly. It was so painful, I knew the bones needed better aligning .. 2 operations on it def helped to realign the bones along w ketamine has helped alot.
I have CRPS from wound that partially severed my perennial nerve left leg in 1990s Need help VA Dr.s have changed my meds and left me bedridden for six months, etc.
Thankyou, those photos are very helpful. My blood felt like cement moving round the burning hornets nest. My wrist was not set properly. First they put a heavy half cast on the breaks for 11 days being in a rural area. They then set it w no anaesthetic and left it unaligned. OMG what a nightmare. I went to another state to see a surgeon who had to do an osteotomy on radial and osteotomy on the ulnar, excising the tip and shorten the ulnar in the forearm. Definitely helped but still not quite right. Ketamine definitely helped me too.
In January 2022, my life changed, stroke in my thalamus. CRPS from a thalamic stroke is cruel and quality of life is low. I spend most days being tortured by being electrocuted, burned alive, and my left hand being dragged on a hot sidewalk. What do I do to handle, I tuck myself into my brain and stare at something on the wall. Maybe if I dont move and very tiny breaths, I won't be found. But usually I run, run to get away. Temperature changes are worst, if it rains I'm curled in a ball screaming. I also have other complications from my stroke, but this torture pain eats away at you, your brain, and takes someone who used to love life to this shell of a person. This is a cruel way to live. My poor body has been in this state for over a year. Thank you for the video..
I think so . Sadly I think some people can get it from quite minor or routine sources. I got it from a large metal tank crushing my foot/ ankle , but I’ve heard of patients that have CRPS from a blood transfusion. I wish you the best on getting care 🧡
I have crps in my left food for years the docs made me out to be crazy. And a bone scan said I have OA. it’s been 4 years nothing has changed it’s for sure crps
Doesn't help it from getting worse, just helps with pain, and depression. It only lasts a few weeks I've heard, maybe a month for some. You have to keep going in. I'm trying to get mine covered as we speak. It can run you into the thousands very quickly, but from what I've seen, it helps tremendously good luck, I hope you get some kind if relief if you have crps 😊
Yes I definitely found ketamine infusion helpful in reducing the burning pain. It’s weird, don’t notice right away but it changed over time. Dr Chopra a CRPS specialist also has great videos on RUclips. Apparently the glial cells are activated w CRPS and they release very toxic chemicals causing intense pain inside the nerve. Ketamine blocks the pain pathway to the brain from the central nervous system. That’s what I heard from his lecture.
I'm in rural Kentucky. A doctor refused to change my cast and caused CRPS. Now I have been left flapping in the breeze. The pain is unbearable sometimes. As long as I have dogs, I will fight. But every single day I either want to die or cut my hand off. To top it off, I can't seem to get ANY help at all. I'm given drugs that do not work and the big blow off. I will never trust another doctor as long as I live, which may not be that long.
I had a similar experience where it was set w no anaesthetic and showed it wasn’t aligned but nobody cared. Went to another state, saw a different surgeon who explained it was set the wrong way. Have had 2 ops, it has helped as I can at least use my hand now. Still have some pain but not the intense hornets nest of burning that drove me insane. I hear and felt everything you’re saying. Ketamine infusions also helped.
22:00 Ground Hog’s Day on repeat! I’ve been warrior-ing CRPS since 2012 and this is all I can say to someone that just can’t get there head around how can someone survive horrid pain 24/7/365. The Ground Hog’s Day movie, but literally every singe minute of every day. There is no break from the pain.
Thank you . I read everything I can and listen. I’m 6 months in off diagnosis and it’s horrible. But I’m a warrior and hope for the best . Thank you 😊 take care
Me too 😢
Trauma related
Hoping you push through this changing thing
I feel for you
Thank you for the info. Helpful, as learning the ortho doctors do not treat it, and shuffle you around to other doctors who don't have much knowledge.
I’m so glad more Doctors are talking about CRPS, I’m going on almost 17 years since diagnosed, upper extremities, started with crushed injury to my right hand. I have done every treatment available for condition, the way I describe mine feels like lava, the burning is so intense and the symptoms are so debilitating, when I get a really bad flair my brain feels like the filaments on a light bulb vibrating really high and very fast I can hear it inside my head, see very bright flashes that look like as if they coming out from my eye lids and then I hear a loud click my whole body jerks I go completely blank on my brain and my brain slowly stars booting up again slowly, lots of brain fog and disorientation, my symptoms sometimes are mildly under control, they always comeback with vengeance, I had a spinal column stimulator that was removed after 5 years, the incisions scar tissue burns now, I get put under when I get epidurals and after a week the area they injected burns and throbs for months, if I get a mammogram the pain last for month, blood work the area they put the needle in feels as if limb is falling off from the pain, mine keeps worsening and it has travel to my feet. I just started a treatment with a thera-laser, I had 6 sessions so far and it help with my spine, my spine always felt as if lava was the spinal fluid flowing in it, is no burning like that since first treatment but the other symptoms continue, my skin burns, also extremities get freezing cold, to many symptoms to list. The worst of my complains is that I don’t know if I’m sleeping or awake, I smile when I’m with people but my insides are constantly screaming so loud from the pain I can hear a word anyone else is saying, that’s life every day for someone with CRPS. I love that more doctors are making videos and there’s more awareness about it and like I say to my pain management and any physician I get a chance to tell, when I said you have no idea what this is like or feels like, I mean it, and other patients with CRPS will agree. I have 4 children many decades ago, 2 without epidurals, labor pain will be a walk in the park.
I definitely found Ketamine infusions helpful with the burning. My wrist was not set properly. It was so painful, I knew the bones needed better aligning .. 2 operations on it def helped to realign the bones along w ketamine has helped alot.
I have CRPS from wound that partially severed my perennial nerve left leg in 1990s
Need help
VA Dr.s have changed my meds and left me bedridden for six months, etc.
Thankyou, those photos are very helpful. My blood felt like cement moving round the burning hornets nest. My wrist was not set properly. First they put a heavy half cast on the breaks for 11 days being in a rural area. They then set it w no anaesthetic and left it unaligned. OMG what a nightmare. I went to another state to see a surgeon who had to do an osteotomy on radial and osteotomy on the ulnar, excising the tip and shorten the ulnar in the forearm. Definitely helped but still not quite right. Ketamine definitely helped me too.
Thank you!
I have CRPS of the lower right extremity. Mine presents as cold however.
In January 2022, my life changed, stroke in my thalamus. CRPS from a thalamic stroke is cruel and quality of life is low. I spend most days being tortured by being electrocuted, burned alive, and my left hand being dragged on a hot sidewalk. What do I do to handle, I tuck myself into my brain and stare at something on the wall. Maybe if I dont move and very tiny breaths, I won't be found. But usually I run, run to get away. Temperature changes are worst, if it rains I'm curled in a ball screaming. I also have other complications from my stroke, but this torture pain eats away at you, your brain, and takes someone who used to love life to this shell of a person. This is a cruel way to live. My poor body has been in this state for over a year. Thank you for the video..
I’m so sorry you also know the need to tuck yourself into your brain to hide away from your body and the rest of your brain.
See if you can try ketamine through a pain clinic. I found it very helpful. I hope you get some relief.
Can you get CRPS after a spinal fusion?
I think so . Sadly I think some people can get it from quite minor or routine sources. I got it from a large metal tank crushing my foot/ ankle , but I’ve heard of patients that have CRPS from a blood transfusion. I wish you the best on getting care 🧡
I have crps in my left food for years the docs made me out to be crazy. And a bone scan said I have OA. it’s been 4 years nothing has changed it’s for sure crps
I have heard ketamine in anesthesia helps prevent CRPS from getting worse from surgery.
Doesn't help it from getting worse, just helps with pain, and depression. It only lasts a few weeks I've heard, maybe a month for some. You have to keep going in. I'm trying to get mine covered as we speak. It can run you into the thousands very quickly, but from what I've seen, it helps tremendously good luck, I hope you get some kind if relief if you have crps 😊
Yes I definitely found ketamine infusion helpful in reducing the burning pain. It’s weird, don’t notice right away but it changed over time. Dr Chopra a CRPS specialist also has great videos on RUclips. Apparently the glial cells are activated w CRPS and they release very toxic chemicals causing intense pain inside the nerve. Ketamine blocks the pain pathway to the brain from the central nervous system. That’s what I heard from his lecture.