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

@jp37019

Hello Everyone,

I found this forum doing a Google searching for my knee pain. My sister-n-laws mother has RSD and advised me to check in to it. In April of this year (2018) I underwent a Lateral release, chondroplasty and had a piece of cartilage removed from my left knee after a fall on concrete at work and a tear to my patellar tendon. 4 days after the surgery I ended up in the hospital literally screaming in pain.( My Dr. thought it best to cover my drain hole from the surgery earlier that day when I went to see him about the small blood clots coming out and since my leg was leaking so much blood.) He had to do an emergency drain of my knee later that evening, due to the amount of build up. (My knee swelled up larger than a cantalope, so fast and bad that my skin was splitting open). The pain was so unbearable. I cried for 10 hours straight. I stayed 4 days in the hospital after he drained my leg that night. When they were moving me from the gurney of the ambulance bed, ( yes, I went to one hospital and they had to transfer me to another), I had no support for my left knee and leg, so it was just flopping around. I felt something snap inside my knee. I tried to tell the doctor and staff that something snapped but they wouldn't listen to me. The Dr. also did not wait for the numbing medicine to kick in before draining my knee. He just gave me the numbing shot, waited about 3 secs and plunged in the plunger. They had 5 nurses holding me down. My brother and husband had to leave the room because they couldn't bare me screaming the way I was. It was a horrible experience.

I was released 4 days later. I ended up doing over 12 weeks of physical therapy. My leg just wasn't healing well. The Dr. said the only thing he could do was to do exploratory surgery on my knee since nothing was showing up on my scans or xrays. I said absolutely not! I have lost range of motion in my knee. I can no longer, kneel, bend, squat, carry anything over 5-10 lbs, stand for more than 30 mins at a time, have to get up every hour to move my knee if sitting and I walk with a cane.

I went to a 2nd doctor, for a 2nd opinion after the first wanted to re-operate. My knee has been in more pain since before the operation. I get shooting pains in the right side of the knee, ( not the side operated on) and my patellar tendon that was ripped constantly hurts. I have this deep throbbing pain all the time, with a burning sensation. When I take a shower, the water feels like it is burning my knee. The left side of my knee all of a sudden developed this dark line out of nowhere. The burning sensation radiates down in to my calf muscle and shin bone. It also radiates to the tibula where the tendon operated on connects. The pain radiates up in to my thigh muscle, and a lot of the times when I am walking I get such an intense pain in my knee, that if I don't stop walking and grab something my knee will give out on me. The 2nd doctor said he wouldn't advise another surgery now, but that within the next 10 yrs I would more than likely have to have a full knee replacement. The 2nd doctor has told me that the reason I have pain, is that I had a small amount of arthritis before the surgery, and that after the surgery my arthritis is what is causing me pain. I don't believe him. It makes absolutely no sense!!!! I worked in a factory, bending, squatting, standing for 10 hours and I had no issues!!!!

I was given a cortisone shot to my knee and that did not work.

I am also diabetic and have diabetic neuropathy. They are trying to say it is arthritis with a combination of the neuropathy. I don't believe that. I have never had pain in my knees before. Only my feet. I just don't know what to do. I can no longer work at my job, am now on unemployment. The 2nd doctor gave me a disability rating of 3% to the knee, 1% whole body impairment, so I can't even file for disability. How can I have only a 1% disability when I can no longer do anything that I could before? I am already Bipolar/Depressed and now my depression is getting so bad. My shrink thinks I may have PTSD from the experience I had to undergo when they drained my knee. I am seriously going crazy that no one believes I am in this much pain all the time. I have asked for something stronger than NSAIDS, but they won't give me anything. I don't want Opioids. I just want to go a day without having to massage my knee all the time.

I am sorry for the long post/rant. I would just like to know what to do? My sister-n-laws mother say she believes I have RSD, because I have most of her symptoms. How do I ask my doctor without making it look like a suggestion that I may have RSD? I am going stir crazy. I have never been one for not doing something! I can't even bend down in my gardens anymore. I am 40 yrs old. Please advise! Thank you all,

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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

Liked by Lisa Lucier

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I 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.

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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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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

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@janetdh

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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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

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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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@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

Liked by Lisa Lucier

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@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

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@overwhelmed

Sorry janetpr, but I think your recommendation is careless and based on old school thinking of RSD- now actually referred to as CRPS- Complex Regional Pain Syndrome. Although nowhere have I ever seen recommended to “expose yourself to the pain intentionally”. That’s a new one.
Most of us who have been coping with CRPS for a while now (I have had it 8 years now) have heard it all. Especially experienced at some doctors still of the mindset that CRPS is Psychological disorder brought on by the person themselves. The most comprehensive study and informative site that I have come upon recently is that of Sean Mackey, MD, PhD, is a Professor of Anesthesiology at Stanford University Published on Mar. 19, 2013. Unfortunately, because I am new to this site it will not allow me to input the URL, however I am sure you can find the YouTube “Treatment and Research: What’s New?”
I consider myself fairly lucky, in that it only took 9 months to be diagnosed. However, unlucky in that my family physician took way to long to refer me to the Orthopaedic Surgeon who diagnosed me. You see the first 3 months are key to possibly being cured of the condition.
I was then referred on to an Anesthesiologist to have many, many nerve blocks, which for myself, only served to “numb” the pain until the block wore off. I also was on multiple medications including gabapentin & hydromorphone which did not agree with me. I did get into a trial for ketamine infusions over the period of 5 days, which I had great hopes for, however it did not have any affect on me. I most recently “applied” for the Spinal Cord Stimulation “SCS” surgery, which although only 50% success rate, I may be one of the “successful” 50%!! Unfortunately, due to having a Head Director of the Pain Centre who was one of those doctors that has not kept up to the “validation” of CRPS/RSD. refused my diagnosis of CRPS (even though my CRPS diagnosis had been validated by many doctors including Neurosurgeons, Neurologists, Anesthesiologists, & the original Orthopaedic Surgeon). She did agree that I had some kind of neuropathic condition, but then booted me out of the Pain Centre with no diagnosis. Hardly acceptable being that I am from Canada & the Hospital is the only one offering this type of treatment! I am in the midst of filing a complaint…however it most likely will have no implications, & not just because the Director just retired from the hospital.
I am currently managing my pain (which is in my left leg up to my hip & my right to my knee- beyond my knee I have Meralgia Paresthetica) with Hydromorph Contin 1200MGs/day, Cymbalta 120MG/day, Lyrica 600MG/day, Fentanyl 50MCG (patch) every other day, hydromorphone 8MG- max 10/day & Quinine Sulfate 200MG. I do have more but they are for managing most of the side effects. I also suffer from migraines which I take Cambia for.
Last year when they had me take an MRI in preparation for the SCS surgery they found two very large cysts on my ovaries which they originally did nothing for until I ended up in the Emergency Department by ambulance at 3 a.m. with ovarian torsion! But because I already had children & a hysterectomy they decided not to perform surgery. They are now just managing with Visanne.
Due to all of the dry mouth caused by the medications I just had to have oral surgery and have 14 teeth removed, Now I have dentures!!!!
Finally to add insult to injury, my husband who has been my primary care giver for the past 8 years ended up in the hospital in pain two weeks ago. After some blood work, a CT scan and a colonoscopy we found out he has colon and bile duct cancer!! I am fear that they have not caught it early enough…my husband is very jaundice and in a whole lot of pain. It took two weeks to get an appointment date for the Oncologist-Radiology which is tomorrow afternoon. Another one is with the Surgical Oncologist I believe.
I really don’t know how much more I can take. I have almost ended my life several times, as I cannot see continuing to live with this pain for the rest of my “natural” life. Now I am so conflicted,,, I need to be here for him, however I am not much use…We are not much use to each other at this point.
Regardless, I hope the information I have provided regarding CRPS helps someone. Just don’t take the diagnosis “It’s all in your head” and please, please do not inflict pain intentionally upon yourself!! Good Luck!

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@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.

Liked by rsnowflake

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@lizzyisme

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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No 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.

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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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@lizzyisme

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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Hello @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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Six months of physical therapy, over the counter pain creams, Alleve, exercising.

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Ty for suggesting existing group!

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I was told by rehabilitation therapist I dont have to be like this REALLY I been dealing with CRPS almost a year in march I have had 2 nerve blocks and refuse to do spinal injection it started from a surgery with my hand and people say things like oh you got arthritis they dont understand but I hope we all can get some relief soon

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@cyme

I was told by rehabilitation therapist I dont have to be like this REALLY I been dealing with CRPS almost a year in march I have had 2 nerve blocks and refuse to do spinal injection it started from a surgery with my hand and people say things like oh you got arthritis they dont understand but I hope we all can get some relief soon

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I don’t recall any reference of negative outcomes of a TKR/ nerve damage when I was speaking to surgeon and reading literature. Therefore, I surprised and a bit angry that I am now going through this CRPS pain. I have told myself and husband that I will not do pain management via more nerve blocks and associated Opioid medications. That’s a road I do not wish to enter. I guess we all will have to find what works for us.

Liked by rsnowflake

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@lizzyisme

I don’t recall any reference of negative outcomes of a TKR/ nerve damage when I was speaking to surgeon and reading literature. Therefore, I surprised and a bit angry that I am now going through this CRPS pain. I have told myself and husband that I will not do pain management via more nerve blocks and associated Opioid medications. That’s a road I do not wish to enter. I guess we all will have to find what works for us.

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Hi I'm renee. I'm very familiar with crps, unfortunately I did a lot of research on my own and tried everything. The only thing that works for me was a spinal stimulator implant. And medical marijuana for some rest and sleep, not sure if either is something u will try but at least there are some options. Talk any time you want. I'd love to listen!

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