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Complex regional pain syndrome or reflex sympathetic dystrophy
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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@jp37019 I am so sorry for what you are going through, I can almost feel your pain because I was in terrible pain before my first TKR (total knee replacement). When I finally saw a doctor to have it done and the surgery was a couple of months off, I got off the phone and got tears in my eyes because I didn’t think I could possibly wait that long. I had a terrible limp too. At this point I have had both knees replaced. The pain, from what I understand, is generally on the inside side of the knee, where it sounds like yours is.
If your knee is that bad, why won’t they do a TKR now?
I have heard/read that the current feeling is that if a TKR is definitely in your future it is best to do it without waiting. The reason probably does not apply to you though. It’s because if they replace it before it degenerates to being really bad the recuperation is less difficult. If you are in that much pain I don’t understand why they want to wait. Maybe you need a third opinion from a doctor at a different hospital - doctors at the same hospital often do not want to disagree with other doctors at the same hospital. My husband had an ankle problem and he saw FIVE doctors before he got a good diagnosis and that doctor performed surgery and fixed the problem.
Also, with the opioid crisis doctors are very reluctant to prescribe them, and that really is the only option other than NSAIDS. The feeling now is that ibuprofen is pretty close to the opioids in ability to help with pain.
I hope you are able to find the source of your extreme pain and get some relief. Please keep us informed.
JK
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1 ReactionI got rsd after a hip replacement in 2012. The surgeon cut 3 nerves in my spine. I woke up screaming in pain and I saw a neurologist who did nerve conduction studies and found the severed nerves. He is the one who diagnosed me with Rsd. I've been suffering for 6 years now with that wrenching pain however I have a pain management Dr who is well known around the world for his use of ketamine for the pain of rsd. I can say IT WORKS!!!! I have met people from Switzerland who have come to Dr Hanna for some relief. He's the best thing that has ever happened to me. He talks to you about what you are going through and he gives you his opinion on what he believes he can do to help you. My advice is give him a try. You will get some relief. It will never go away completely but there's no cure. His name is Dr Ashraf Hanna. He is located at the Florida spine Institute on Drew St. In Clearwater, Florida.. You can call and get an appointment. If you are interested get back to me and I'll help you in any way I can. Good luck with this pain. I myself have never experienced anything like this pain in my life. I wish you much luck.
There is a chance that you nerve damage which can cause a pain so unbearable at times. It's called Rsd. I got it after a total hip replacement. I have also tried every drug you did. I've had this Rsd since 2012. I was lucky enough to have a great pain management Dr. He is the only one who I have ever heard that uses ketamine for Rsd. It helps immensely. I take 1 opiate which he has lowered the dosage due to the big conflict of interest with the DEA AND FDA. Ketamine has just been an acceptable method of pain relief. If you would like detailed information please get back to me. I wish you much relief for your pain
I got rsd from a Thr. I have severed nerves which I have been dealing with horrific pain for 6 long years. I have an awesome pain management Dr and he uses ketamine. He has given me the troches as well as the IV ketamine. In fact I am getting ketamine infused on the 17th and 18th of this month. It is one of the only things that I have gotten relief from this terrible disease. I was diagnosed by a neurologist within the first few months. Now I have staged and can't touch my own leg. After ketamine I feel great sometimes I've had relief for a few months but it always comes back. There is no cure. I hope you find relief. The Dr I see is in Clearwater, Florida. He is amazing. Good luck to you. @janetdh
@bear420 I have rsd /Crps since 2012. It started in my left leg after a Thr. Nerves were cut. I woke up screaming in pain and also with drop foot. I was diagnosed with Rsd by a neurologist within the first couple months. The pain is horrible. Yes you are right it can spread. It has moved into my right foot and both hands. I also got gastropareysis from it. It is by far the worst pain I've ever felt. It changes the way you feel, think and live. I'm now in a wheelchair after the other hip was replaced and kept getting infected. After 4 surgeries in the past 6 months all due to infections all hip components have been completely removed. I don't have a hip on the right side now. That's why I am in a wheelchair. I get ketamine infusions for the RSD pain. It really helps me a lot. The pain comes back but I do get relief. The longest I have been able to go without the ketamine is 3 months. That's how long I spent in rehab building upper body strength. If I can help let me know. I've learned a lot about this disease. God bless
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1 Reaction@oldnana hi I totally understand what you are going through. I had a hip replacement in 2012 and woke up screaming. The surgeon had cut 3 nerves. I had nerve conduction study done by a neurologist and was diagnosed with RSD also. I have an amazing pain management Dr who uses ketamine infusions for the pain. It works but unfortunately for me the pain returns after about a month. He is well known and has patients across the country who come for ketamine therapy. If you want I can give you his name, number and address. He's located in Florida. I hope I was of some help. It's a horrible disease. Good luck to you
@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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1 ReactionNo advice, first time I have read about procedure. Please keep us posted, since I had another sleepless night with continuous pain 7 months after TKR. Thanks for sharing.
Has anyone had this experience of continuing pain around replaced joint? Due to have a genuclar block on the 23rd of this month. Any advice?
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1 ReactionHello @lizzyisme. You may noticed I combined your discussion with an existing discussion titled, "After knee replacement, I developed CRPS (RSD)." I did this so you could both read through all of the messages members have posted on the topic you are asking about, but also so those members see your message and come back to share their thoughts with you.
@lizzyisme, you mentioned you are trying a genuclar block, would you mind sharing what other treatments you have tried that nave not worked?
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