1. < Chronic Pain

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

Interested in more discussions like this? Go to the Chronic Pain Support Group.

cheris | @cheris | Feb 25, 2017
In reply to @rmeddings "I massaged with vitamin E early on, quite often, my scars are minimal. I still massage..." + (show)
@rmeddings

I massaged with vitamin E early on, quite often, my scars are minimal. I still massage often, simply because it temporarily helps the pain

Jump to this post

I don,t know if you have given thoughts to second opion or if you need the other knee done. Just putting it out there. I had Dr. Trousdale at Mayo Clinic ROchester do my knees and he is excellant.

REPLY
JK | @contentandwell | Feb 26, 2017
In reply to @rmeddings "I massaged with vitamin E early on, quite often, my scars are minimal. I still massage..." + (show)
@rmeddings

I massaged with vitamin E early on, quite often, my scars are minimal. I still massage often, simply because it temporarily helps the pain

Jump to this post

@cheris, I am not sure if this post was intended for me or someone else, but I will have the second knee done and I have tremendous in the surgeon that I have carefully chosen this time so hopefully things will be better. I'm happy to hear that your experience with Dr. Trousdale went so well.
JK

REPLY
JK | @contentandwell | Feb 26, 2017
In reply to @overwhelmed "Just a follow-up to my reference of the cancer diagnosis that my husband had just received..." + (show)
@overwhelmed

Just a follow-up to my reference of the cancer diagnosis that my husband had just received not long before my last post. Unfortunately, after becoming sick about three weeks ago, we found out that he only has weeks to live. His cancer started in his colon, went to the liver, lungs and bone.....all without any symptoms until 3 weeks ago. Now he is in liver failure. He has been my support for the past 8 years in dealing with CRPS until we had exhausted all treatments....& now he is going to die in a matter of weeks!!! I just want to go with him...It should have been me...I have been hoping to die as a means to escape this terrible pain. I do not have a life, it is merely an existence!!!! I will be left alone with no family and only one friend that has continued to be my friend through CRPS.

Jump to this post

@overwhelmed, I am so sorry to hear about your husband. I can only imagine how difficult this must be for you. Thankfully you do have at least one friend who is supportive. My son and daughter are not local so I would need to rely on others if in this situation. I learned when I had my transplant that some of the friends I thought were my closest friends had no use for me while I was recovering. It was a real learning experience. I hope you can get the support you deserve and need.
JK

REPLY
JK | @contentandwell | Feb 26, 2017
In reply to @rmeddings "Hi I had bilateral total knee surgery Jan 26 2016. I had custom knee implants by..." + (show)
@rmeddings

Hi
I had bilateral total knee surgery Jan 26 2016. I had custom knee implants by Conformis. My surgery went well, PT went well, however, I have never gone a day without pain since surgery. Burning pain up and down both legs for a long time, now pain is mostly localized to the knees. I have tried spinal blocks, gabapentin,lyrica,cymbalta, topical cremes. Nothing has really helped, my nights are always the worst, many sleepless nights in the past year. I am now trying acupuncture, which seems to help a bit. Can anyone help, at times I just feel so desperate !!

Jump to this post

@mari, I am curious, why not the ocean? I am looking forward to getting away, hopefully to someplace ocean side, although I know I cannot go out in the sun during mid-day at all due to the immunosuppressants. There is something so calming about the ocean.

REPLY
mari | @mari | Feb 26, 2017
In reply to @rmeddings "Hi I had bilateral total knee surgery Jan 26 2016. I had custom knee implants by..." + (show)
@rmeddings

Hi
I had bilateral total knee surgery Jan 26 2016. I had custom knee implants by Conformis. My surgery went well, PT went well, however, I have never gone a day without pain since surgery. Burning pain up and down both legs for a long time, now pain is mostly localized to the knees. I have tried spinal blocks, gabapentin,lyrica,cymbalta, topical cremes. Nothing has really helped, my nights are always the worst, many sleepless nights in the past year. I am now trying acupuncture, which seems to help a bit. Can anyone help, at times I just feel so desperate !!

Jump to this post

I was Forcefully walking in knee hi water. I thought I was really doing good for my knee - but Forcefully is the operative word. Yes i agree - There is something so calming about the ocean. that’s why - even tho I have a home in S C West, AZ -  my heart is still in CA. I wish u well. Mari<br>Mari<br><br>

REPLY
blindeyepug | @blindeyepug | Feb 26, 2017
In reply to @rmeddings "Hi I had bilateral total knee surgery Jan 26 2016. I had custom knee implants by..." + (show)
@rmeddings

Hi
I had bilateral total knee surgery Jan 26 2016. I had custom knee implants by Conformis. My surgery went well, PT went well, however, I have never gone a day without pain since surgery. Burning pain up and down both legs for a long time, now pain is mostly localized to the knees. I have tried spinal blocks, gabapentin,lyrica,cymbalta, topical cremes. Nothing has really helped, my nights are always the worst, many sleepless nights in the past year. I am now trying acupuncture, which seems to help a bit. Can anyone help, at times I just feel so desperate !!

Jump to this post

Water exercise is really the best exercise for any of us who have pain but need to keep moving to prevent it from getting worse. I think water PT is the best, also. It can be a hassle - getting in a suit and getting wet and all - but the rewards are worth it to me. I highly recommend water therapy.

REPLY
JK | @contentandwell | Feb 26, 2017
In reply to @rmeddings "Hi I had bilateral total knee surgery Jan 26 2016. I had custom knee implants by..." + (show)
@rmeddings

Hi
I had bilateral total knee surgery Jan 26 2016. I had custom knee implants by Conformis. My surgery went well, PT went well, however, I have never gone a day without pain since surgery. Burning pain up and down both legs for a long time, now pain is mostly localized to the knees. I have tried spinal blocks, gabapentin,lyrica,cymbalta, topical cremes. Nothing has really helped, my nights are always the worst, many sleepless nights in the past year. I am now trying acupuncture, which seems to help a bit. Can anyone help, at times I just feel so desperate !!

Jump to this post

@mari Hmm, when I walk/jog in the pool I do it fairly forcefully. What did your doctor say was wrong with that?
My son lives in southern CA, two blocks from the beach and loves it.
JK

REPLY
JK | @contentandwell | Feb 27, 2017
In reply to @rmeddings "Hi I had bilateral total knee surgery Jan 26 2016. I had custom knee implants by..." + (show)
@rmeddings

Hi
I had bilateral total knee surgery Jan 26 2016. I had custom knee implants by Conformis. My surgery went well, PT went well, however, I have never gone a day without pain since surgery. Burning pain up and down both legs for a long time, now pain is mostly localized to the knees. I have tried spinal blocks, gabapentin,lyrica,cymbalta, topical cremes. Nothing has really helped, my nights are always the worst, many sleepless nights in the past year. I am now trying acupuncture, which seems to help a bit. Can anyone help, at times I just feel so desperate !!

Jump to this post

@blindeyepug, I agree, it really is a good way to get exercise but the hassle of getting in a bathing suit, then having to change to dry clothes afterwards, I sometimes dread it. Many of the people in the classes use the hot tub afterwards but I am paranoid about that despite the club being extremely clean and the water is tested very frequently. My "reward" is going into the sauna for about five minutes.

REPLY
bear420 | @bear420 | Mar 23, 2017

I I've been diagnosed with CRPS 2 years ago from a high ankle sprain it has spread to my right arm and now to my face and my eyes. I was wondering has anyone else had this happen to. It is very hard to live with us cuz you never know where it's going to go next. What really sucks is now I can't drive that far or you and get my son out on his trip anywhere even though he is 16 I can drive. I lost ability to write because of the fact in my right hand so I lost a lot of stuff and now I'm trying to retrain my left hand to do everything.

REPLY
8 replies
janetdh | @janetdh | Mar 23, 2017
In reply to @bear420 "I I've been diagnosed with CRPS 2 years ago from a high ankle sprain it has..." + (show)
@bear420

I I've been diagnosed with CRPS 2 years ago from a high ankle sprain it has spread to my right arm and now to my face and my eyes. I was wondering has anyone else had this happen to. It is very hard to live with us cuz you never know where it's going to go next. What really sucks is now I can't drive that far or you and get my son out on his trip anywhere even though he is 16 I can drive. I lost ability to write because of the fact in my right hand so I lost a lot of stuff and now I'm trying to retrain my left hand to do everything.

Jump to this post

Yes. It is so frustrating and scary. It's path is distinct to each individual. Mine travelled from right ankle to left knee to left hand to right hand to right knee to nose and lleft cheek to sphincters. Go figure! I use hand controls in my car. Try not to let me get too down.

REPLY
View MoreView Less
Please sign in or register to post a reply.