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DiscussionComplex regional pain syndrome or reflex sympathetic dystrophy
Chronic Pain | Last Active: Oct 3, 2023 | Replies (185)Comment receiving replies
Replies to "Hi I had bilateral total knee surgery Jan 26 2016. I had custom knee implants by..."
Yes, I do have a tens unit , which I use daily. It helps while in use, but no lasting benefits.
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?
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.
@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
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.
@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
<br><br><br><br><br>you are smart. The first knee I did almost nothing to exercise and <br>get stronger. The second knee did lots of exercises to gain strength and I <br>totally know that was a huge help.<br> <br><br>
@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.
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.
how about a TENS OR EMS UNIT?<br>Mari