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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

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lizzyisme | @lizzyisme | Jan 17, 2019

Six months of physical therapy, over the counter pain creams, Alleve, exercising.

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lizzyisme | @lizzyisme | Jan 17, 2019

Ty for suggesting existing group!

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cyme | @cyme | Jan 18, 2019

I was told by rehabilitation therapist I dont have to be like this REALLY I been dealing with CRPS almost a year in march I have had 2 nerve blocks and refuse to do spinal injection it started from a surgery with my hand and people say things like oh you got arthritis they dont understand but I hope we all can get some relief soon

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1 reply
lizzyisme | @lizzyisme | Jan 18, 2019
In reply to @cyme "I was told by rehabilitation therapist I dont have to be like this REALLY I been..." + (show)
@cyme

I was told by rehabilitation therapist I dont have to be like this REALLY I been dealing with CRPS almost a year in march I have had 2 nerve blocks and refuse to do spinal injection it started from a surgery with my hand and people say things like oh you got arthritis they dont understand but I hope we all can get some relief soon

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I don’t recall any reference of negative outcomes of a TKR/ nerve damage when I was speaking to surgeon and reading literature. Therefore, I surprised and a bit angry that I am now going through this CRPS pain. I have told myself and husband that I will not do pain management via more nerve blocks and associated Opioid medications. That’s a road I do not wish to enter. I guess we all will have to find what works for us.

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1 reply
rsnowflake | @rsnowflake | Feb 15, 2019
In reply to @lizzyisme "I don’t recall any reference of negative outcomes of a TKR/ nerve damage when I was..." + (show)
@lizzyisme

I don’t recall any reference of negative outcomes of a TKR/ nerve damage when I was speaking to surgeon and reading literature. Therefore, I surprised and a bit angry that I am now going through this CRPS pain. I have told myself and husband that I will not do pain management via more nerve blocks and associated Opioid medications. That’s a road I do not wish to enter. I guess we all will have to find what works for us.

Jump to this post

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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1 reply
rsnowflake | @rsnowflake | Feb 15, 2019
In reply to @mary121658 "@overwhelmed I'm so sorry you are going through this. I have RSD since 2012. I had..." + (show)
@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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lizzyisme | @lizzyisme | Feb 15, 2019
In reply to @rsnowflake "Hi I'm renee. I'm very familiar with crps, unfortunately I did a lot of research on..." + (show)
@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!

Jump to this post

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.

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rsnowflake | @rsnowflake | Feb 16, 2019

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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2 replies
lizzyisme | @lizzyisme | Feb 16, 2019

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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mary121658 | @mary121658 | Feb 18, 2019
In reply to @rsnowflake "Yes unfortunately it has effects on other parts of my body. I get sick more often..." + (show)
@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.

Jump to this post

@lizzyisme @rsnowflake oweflake

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