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

@colleenyoung

Hey @rowan. Thanks for checking in and bringing @oldnana back into the conversation. I, too, would like to hear how @medic7054 and @overwhelmed are doing? @salena54, we haven’t heard from you for a while either.

@rowan, how are you doing these days?

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@colleenyoung

Hey @rowan. Thanks for checking in and bringing @oldnana back into the conversation. I, too, would like to hear how @medic7054 and @overwhelmed are doing? @salena54, we haven’t heard from you for a while either.

@rowan, how are you doing these days?

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Welcome back @medic7054. It looks like you tried to post something, but the message is blank. 🙁 Can you try again please? We’d love to hear from you.

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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 !!

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@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 !!

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how about a TENS OR EMS UNIT?
Mari

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@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 !!

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Yes, I do have a tens unit , which I use daily. It helps while in use, but no lasting benefits.

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@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 !!

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Hello @rmeddings, and welcome to Connect. I moved your discussion and combined it with an existing discussion about RSD development after a knee replacement. If you are responding by email, I suggest clicking on the VIEW & REPLY button so that you can see the entire discussion that has taken place about the things you are currently experiencing.

I would like to invite back to the discussion @medic7054, @rowan, @salena54, @janetpr, and @oldnana as they had great talking points about RSD and managing pain.

@rmeddings, what has your surgeon or physician said about your pain? Does he or she think there are any other causes?

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Justin
All I’ve been told by my surgeon is that it is probably nerve damage due to the surgery. He has tried to help me, but seems at a loss as to what to do. He still feels I will get over this at some point, but has no idea when. If I could choose again , I would never have this surgery. I had high expectations of doing well, never dreamed of having so much trouble.

I will try to find the other discussions, that you speak of.
Thank You !

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@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 !!

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I still have pain every day. I currently take 150mg of Lyrica twice a day and 60mg of Cymalta once a day. I take Ibuprofen often and take Oxcodone on really bad days. I am scheduled to start Ketamine infusions the first of April. I will have infustions 5 days the first week and 5 days the following week. I recently had elective surgery and requested they put Ketamine in IV. After this surgery, I went four days with no pain so I believe this treatment could really help me. These four days are the only time I have been pain free in 2 1/2 years. After these infusions, I will not know how long it will last, hopefully the rest of my life.

Liked by rmeddings

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I have had both knees replaced. I have the pain also but it comes and goes. Damp cold weather makes it worse. My DR. told me probably nerve damage. Most times it slowly goes away after a year. What I have found that really helps is massage. Use vitamin E oil. My pain always improves after I massage both knees. It also helps the scar heal and the skin gets nice and soft. My scar from last March is hardly visible. The scar from last month is looking good also. My biggest problem now is SI pain that makes it hard to get around and exercise. Does anyone have a problem with that? Doing physical therapy with the electric pulses and heat which has helped a lot and planning on an injection. Hopefully it will continue to get better.

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@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 !!

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@rmeddings, I’m sorry to hear about your constant pain. I had a knee replacement in June of 2013. At first it seemed good but I never got the flex they expect patients to get despite a longer than typical period of PT, and now it simply hurts a lot. I am planning a second knee replacement sometime soon and hope for better. I chose my original surgeon hastily because I was in pain 24/7 and desperate. The surgeon I am going to this time immediately knew who did my first replacement when he saw the xrays and apparently my original surgeon has been using that knee for 30 years and is one of the few who still does. Let’s face it, in 30 years there have been improvements.
That said I am planning on getting a conformis knee also. The ortho surgeon I go to is one of the developers of the conformis knee. He offers you choices, such as the Depuy knee also, but I have heard such positive results from other with the conformis knee that I want to go with that one. Your experience does frighten me a bit.
I hope you find something that will help to alleviate the constant pain. Living in constant pain gets very depressing I think. I find that I can take pain, even severe, for a limited amount of time but when I know it is going to be a long time it makes it all the worse. I used to have severe migraines lasting three to four days and that was exhausting.
I don’t know where you live, but if you happen to be in the Northeast you might want to consider this orthopedic surgeon. I have heard he is wonderful at fixing bad replacements. Of course revisions are more difficult that original replacements so it is not something done without a lot of forethought.
JK

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@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 !!

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My first knee replacement was hard . Lots of pain and swelling so movement was really restricted I could barely bend my knee. Started walking in the pool and everything did much better. Did the other knee two months ago and had great range of motion from the start no swelling or that tight band around the knee pain I had so I think every knee just reacts differently.

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@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 !!

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@cheris, I have been doing pool exercises since long before the knee replacement and resumed them as soon as possible after it. I do them more frequently now and thanks to that my knee that is in need of replacing is doing better. My ortho says that the exercises I am doing are the best things for the knee and I am sure he is right. I don’t think I’m limping these days — if so not badly.
I’m so glad to hear your second knee went better than the first. Around here most of the better doctors will not do two at the same time but I have heard from people who have had them both done that one can be great and other not so much so you never know. I just want some strength back in the knee that needs doing.
JK

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@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 !!

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you are smart.  The first knee I did almost nothing to exercise and
get stronger. The second knee did lots of exercises to gain strength and I
totally know that was a huge help.
 

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@rmeddings

Justin
All I’ve been told by my surgeon is that it is probably nerve damage due to the surgery. He has tried to help me, but seems at a loss as to what to do. He still feels I will get over this at some point, but has no idea when. If I could choose again , I would never have this surgery. I had high expectations of doing well, never dreamed of having so much trouble.

I will try to find the other discussions, that you speak of.
Thank You !

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@rmeddings, I moved your post in to an existing discussion and combined it as well. Some other members have chimed in on your post. If you are replying by email I reccomend clicking on the blue VIEW & REPLY button and it will take you directly to the discussion I moved it to and you will be able to see everyones great and welcoming responses!

Liked by Ballred

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@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 !!

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@cheris, well all of that exercise and PT didn’t help much. I even did 8 days in rehab after the replacement. My current surgeon does not recommend rehab because rehab centers tend to not be as careful about germs as hospital, and of course for me now that is even more important being on immunosuppresants.

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