Complex regional pain syndrome or reflex sympathetic dystrophy

Posted by oldnana @oldnana, Mar 22, 2016

After knee replacement, I developed RSD (reflex sympathetic dystrophy). I have had severe pain in my legs for a year and half. Does anyone have suggestion as to how I may control this disease

@mary121658

@overwhelmed I'm so sorry you are going through this. I have RSD since 2012. I had a hip replacement and the surgeon cut my tibial, peraneal and sciatic nerves. I woke up screaming and with drop foot. I've been on methadone since then after getting a pain management Dr. Through my attorney. I was diagnosed by a neurologist with RSD. My pain management Dr is well known across the country for ketamine therapy. It works but you have to keep going back after the 5 days of treatment. I now after all this time can deal with the pain for a few months. There is no cure and no its not in your head however it can spread. I now have rotation to the hip in my left leg where it started and it has spread to my right foot and both hands. I too have tried to take my life with sleeping pills. It's not worth it. I want to live. I'm now in a wheelchair cuz I had the other hip replaced and almost 2 years later I got an infection that just wouldn't go away. I had 4 surgeries in the past 6 months. The infection has gone into the femur. My leg is 3 inches shorter than the other one which is useless. The hip has been completely removed after trying a spacer and numerous infections. Hence the wheelchair. I'm so sorry your husband is going through this with all the other problems you have. One other thing I won't get the spinal cord stimulator cuz I have a friend who did and the leads broke off and she had to have surgery again to remove it and get the leads out.. She got a new one put in and tells me that she is still in such terrible pain. Too close to the spinal cord for me. I wish you so much luck my dear. I know what you are going through with this disease. I pray your husband has a good recovery. God bless you both.

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Hey overwhelmed, I'm renee. Have crps from a broken ankle. Everything went crazy after that. Got diagnosed early. Had tons of nerve blockers and was on gabapentin. Nothing worked I took my life back by getting a spinal stimulator. I had almost lost my hand. When I got the implant my hand and arm were back 2 normal. Unfortunately it jumped to my other arm and my spine. I've had no problem with the implant I got it April 2018. And medical marijuana helps with keeping my stress down. But weather changes also effect my pain immediately. I keep a daily journal to c what helps and which days r bad.

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@rsnowflake

Hi I'm renee. I'm very familiar with crps, unfortunately I did a lot of research on my own and tried everything. The only thing that works for me was a spinal stimulator implant. And medical marijuana for some rest and sleep, not sure if either is something u will try but at least there are some options. Talk any time you want. I'd love to listen!

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Hello Renee. Thanks for your note. I have had one grandular nerve block and another in March. I was told about the pump but will not go that route. I have been prescribed some creams that are working very well along with a patch. No pharma drugs for me, I was told of a few that I can take at night. But due to another drug I must take, there may be a contradiction. I guess I can bear some pain over taking more pills. I use CBD in vaping form, cream and tincture, that helps take pain or anxiety edge off. It’s my new normal and I intend on moving forward. One thing I do have is inflammation In my knee so when I walk my leg feels heavy. Did you have this problem? What a nasty condition, sorry to hear you too are affected. Sucks.

Liked by rsnowflake

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Yes unfortunately it has effects on other parts of my body. I get sick more often than I used to, my doctor said it is normal with this disorder. It never has the same medical effects on each person that has it. So basically I do my own research and try to make it not change my life…… which sometimes it does. Not enough research because it's so rare. Again keep in touch. I'll always be hear to listen or trade information. Feel good today.

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About the jumping of pain, I believe my left knee is starting to be affected and my left breast starting with some gnarly pins and needles. I pray this does not continue.🙏🏻

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@rsnowflake

Yes unfortunately it has effects on other parts of my body. I get sick more often than I used to, my doctor said it is normal with this disorder. It never has the same medical effects on each person that has it. So basically I do my own research and try to make it not change my life…… which sometimes it does. Not enough research because it's so rare. Again keep in touch. I'll always be hear to listen or trade information. Feel good today.

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@lizzyisme @rsnowflake oweflake

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@rsnowflake

Yes unfortunately it has effects on other parts of my body. I get sick more often than I used to, my doctor said it is normal with this disorder. It never has the same medical effects on each person that has it. So basically I do my own research and try to make it not change my life…… which sometimes it does. Not enough research because it's so rare. Again keep in touch. I'll always be hear to listen or trade information. Feel good today.

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I've had RSD for 7 years now. It started after a total hip replacement. I woke up screaming and had drop foot. You are right about one thing. The weather plays alot with this disease. I live in Florida and when hurricanes comes near us and the barometric pressure changes my RSD is out of control. What started in my left leg is now in my right foot and both hands. I see a pain management Dr who uses ketamine to help me with the pain. He's wonderful. He's even on the news from Time to time. His name is Ashraf Hanna. He is in Clearwater Florida and sees people from all over the country.. I also developed Gastropyrisis. It's a disease where my stomach doesn't empty. Instead my food comes back up sometimes even when I'm sleeping. I take several medications for my stomach. I'm also taking gabapentin and methadone for my RSD. It does spread. I've met a few people who have it full body. The disease has been around for over 100 years. It started back in world War 2. Dr's couldn't understand why soldiers who had to have a limb amputated were in this insane pain. At the time they called it phantom pain. The patients were given high doses of morphine to control their pain. Sometimes it worked and others would scream constantly. It has only been a few years since the Fda began to recognize it as a chronic pain. I hope I've been able to answer your questions. If I can help I will… In peace ✌ ❤ 🌟 Mary

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@mary121658

I've had RSD for 7 years now. It started after a total hip replacement. I woke up screaming and had drop foot. You are right about one thing. The weather plays alot with this disease. I live in Florida and when hurricanes comes near us and the barometric pressure changes my RSD is out of control. What started in my left leg is now in my right foot and both hands. I see a pain management Dr who uses ketamine to help me with the pain. He's wonderful. He's even on the news from Time to time. His name is Ashraf Hanna. He is in Clearwater Florida and sees people from all over the country.. I also developed Gastropyrisis. It's a disease where my stomach doesn't empty. Instead my food comes back up sometimes even when I'm sleeping. I take several medications for my stomach. I'm also taking gabapentin and methadone for my RSD. It does spread. I've met a few people who have it full body. The disease has been around for over 100 years. It started back in world War 2. Dr's couldn't understand why soldiers who had to have a limb amputated were in this insane pain. At the time they called it phantom pain. The patients were given high doses of morphine to control their pain. Sometimes it worked and others would scream constantly. It has only been a few years since the Fda began to recognize it as a chronic pain. I hope I've been able to answer your questions. If I can help I will… In peace ✌ ❤ 🌟 Mary

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Thank you for your information I'm only 45 and I would love to get the ketamine treatment, but unfortunately I can't afford it and my insurance won't cover or reimburse any of it. I like near Philadelphia and have only heard amazing things about this clinic. And the clinic even tried to negotiate with my insurance, but with no luck. So at this point I have spinal stimulator that works for my arms. But it seems that my health has deteriorated since I've been diagnosed, which I have heard from some of the other people I've been speaking with. Feel free to chat anytime or just vent. Renee

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@rsnowflake

Thank you for your information I'm only 45 and I would love to get the ketamine treatment, but unfortunately I can't afford it and my insurance won't cover or reimburse any of it. I like near Philadelphia and have only heard amazing things about this clinic. And the clinic even tried to negotiate with my insurance, but with no luck. So at this point I have spinal stimulator that works for my arms. But it seems that my health has deteriorated since I've been diagnosed, which I have heard from some of the other people I've been speaking with. Feel free to chat anytime or just vent. Renee

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@@rsnowflake

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@rsnowflake

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Hi I'm sorry you have this disease. It can be very complicated as yes it is different for everyone. You are still young. I'm 60 now and deal with it daily. I'm one of those people who get ketamine infusions and then within a few days the pain slowly comes back. I'm sorry your insurance won't cover it but I think if you get just an appointment with Dr Hanna to see if he can help with your problem it may be to your benefit. I've seen him work with people who have financial difficulties. Also you can get in touch with the Rsd/CRPS. Association in Connecticut. They also have helped people as well. Google for the phone number and ask to speak to Jim Broatch. He's the president.. He's a very kind man who talked to me a few times when I first got RSD. Good man. He's also on Facebook and there are groups of people who have RSD /CRPS. I really hope you can get in a good group. I personally don't want the stimulator. I have a dear friend who has it and she has gone through a few problems with it. The leads came off and she had to have the surgery again. I wish you luck with it and I hope it helps you. God bless ✌ ❤🌟 Mary Edwards

Liked by rsnowflake

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@mary121658

Hi I'm sorry you have this disease. It can be very complicated as yes it is different for everyone. You are still young. I'm 60 now and deal with it daily. I'm one of those people who get ketamine infusions and then within a few days the pain slowly comes back. I'm sorry your insurance won't cover it but I think if you get just an appointment with Dr Hanna to see if he can help with your problem it may be to your benefit. I've seen him work with people who have financial difficulties. Also you can get in touch with the Rsd/CRPS. Association in Connecticut. They also have helped people as well. Google for the phone number and ask to speak to Jim Broatch. He's the president.. He's a very kind man who talked to me a few times when I first got RSD. Good man. He's also on Facebook and there are groups of people who have RSD /CRPS. I really hope you can get in a good group. I personally don't want the stimulator. I have a dear friend who has it and she has gone through a few problems with it. The leads came off and she had to have the surgery again. I wish you luck with it and I hope it helps you. God bless ✌ ❤🌟 Mary Edwards

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Thank you so much for your kind words and helpful advice. I'll definitely try to contact your doctor and the rsd,/crps association in Connecticut. Please check in any time…I know many people don't know what this horrible disease is like. I had 2 c a neurologist, two psychiatrists, and rheumatologist and MY spinal surgeon and pain management specialist. To get the stimulator approved. But I have a 16 year old daughter who needs my 2b as healthy as I can. That's why I chose to get the spinal stimulator, I was like a pain level 10 every day, it saved my hand and got an 80% improvement in pain. God bless

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@rsnowflake

Thank you so much for your kind words and helpful advice. I'll definitely try to contact your doctor and the rsd,/crps association in Connecticut. Please check in any time…I know many people don't know what this horrible disease is like. I had 2 c a neurologist, two psychiatrists, and rheumatologist and MY spinal surgeon and pain management specialist. To get the stimulator approved. But I have a 16 year old daughter who needs my 2b as healthy as I can. That's why I chose to get the spinal stimulator, I was like a pain level 10 every day, it saved my hand and got an 80% improvement in pain. God bless

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Sorry wasn't sure I mentioned my name I'm Renee!😀

Liked by mary121658

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@rsnowflake

Thank you so much for your kind words and helpful advice. I'll definitely try to contact your doctor and the rsd,/crps association in Connecticut. Please check in any time…I know many people don't know what this horrible disease is like. I had 2 c a neurologist, two psychiatrists, and rheumatologist and MY spinal surgeon and pain management specialist. To get the stimulator approved. But I have a 16 year old daughter who needs my 2b as healthy as I can. That's why I chose to get the spinal stimulator, I was like a pain level 10 every day, it saved my hand and got an 80% improvement in pain. God bless

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Well I'm happy to help anyway I can. Hopefully you can get a few sessions with Dr Hanna and get ketamine treatment.. There are many ways to get help. I'm here for you. Keep in touch and let me know how you are doing. Peace ✌ love ❤ and light 🌟 I send you.
Always, Mary Edwards @@

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