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

@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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Am taking those medications as well for neuropathy with limited success. Spinal blocks and topical creams not at all. There are two types of therapy that are not as readily available but you might want to look into them. One uses ketamine–can be administered as troches (lozenges) or delivered intravenously. The other is called scrambler (or Calmar) therapy. It is an electric pulse treatment much more focused than using a tens unit. It is being used in Italy and there is a doctor in Rhode Island who has brought it to the U.S. I know what a struggle it is when medications don’t work–be strong. If the surgeon is the doctor that is trying to treat nerve pain and damage you need to go to a neurologist and/or a pain management specialist. Surgeons sometimes think that they have the answers. They don’t.

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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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When I had PT in pool, everyone there said pool pt is better than dry PT. I told Dr. that I like to walk strongly in low water in ocean, he did not think I was ready for it at that time.

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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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Thanks

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

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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 don’t really think you should be concerned about the Conformis knee. I really believe my problem is, how my body reacted to the trauma of surgery to my nerves. I will admit, however that I have wondered about all different possibilities.Chronic pain does strange things to your mind,I believe. I do sometimes think of trying to get another surgeon to evaluate my situation at this point. I know it would be difficult to do, Most Dr’s do not want to get involved.Would you be willing to give me the name of your surgeon, the one who was involved in the development of the Conformis knee ?

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@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

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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.

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@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

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@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

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@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.

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@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

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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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@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.

Liked by mary121658

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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 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
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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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.

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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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@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

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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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@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.

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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.

Liked by mary121658

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@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.

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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.

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