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

@mary121658

@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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Hey overwhelmed, I'm renee. Have crps from a broken ankle. Everything went crazy after that. Got diagnosed early. Had tons of nerve blockers and was on gabapentin. Nothing worked I took my life back by getting a spinal stimulator. I had almost lost my hand. When I got the implant my hand and arm were back 2 normal. Unfortunately it jumped to my other arm and my spine. I've had no problem with the implant I got it April 2018. And medical marijuana helps with keeping my stress down. But weather changes also effect my pain immediately. I keep a daily journal to c what helps and which days r bad.

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@rsnowflake

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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Hello Renee. Thanks for your note. I have had one grandular nerve block and another in March. I was told about the pump but will not go that route. I have been prescribed some creams that are working very well along with a patch. No pharma drugs for me, I was told of a few that I can take at night. But due to another drug I must take, there may be a contradiction. I guess I can bear some pain over taking more pills. I use CBD in vaping form, cream and tincture, that helps take pain or anxiety edge off. It’s my new normal and I intend on moving forward. One thing I do have is inflammation In my knee so when I walk my leg feels heavy. Did you have this problem? What a nasty condition, sorry to hear you too are affected. Sucks.

Liked by rsnowflake

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Yes unfortunately it has effects on other parts of my body. I get sick more often than I used to, my doctor said it is normal with this disorder. It never has the same medical effects on each person that has it. So basically I do my own research and try to make it not change my life…… which sometimes it does. Not enough research because it's so rare. Again keep in touch. I'll always be hear to listen or trade information. Feel good today.

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About the jumping of pain, I believe my left knee is starting to be affected and my left breast starting with some gnarly pins and needles. I pray this does not continue.🙏🏻

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@rsnowflake

Yes unfortunately it has effects on other parts of my body. I get sick more often than I used to, my doctor said it is normal with this disorder. It never has the same medical effects on each person that has it. So basically I do my own research and try to make it not change my life…… which sometimes it does. Not enough research because it's so rare. Again keep in touch. I'll always be hear to listen or trade information. Feel good today.

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@rsnowflake

Yes unfortunately it has effects on other parts of my body. I get sick more often than I used to, my doctor said it is normal with this disorder. It never has the same medical effects on each person that has it. So basically I do my own research and try to make it not change my life…… which sometimes it does. Not enough research because it's so rare. Again keep in touch. I'll always be hear to listen or trade information. Feel good today.

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I've had RSD for 7 years now. It started after a total hip replacement. I woke up screaming and had drop foot. You are right about one thing. The weather plays alot with this disease. I live in Florida and when hurricanes comes near us and the barometric pressure changes my RSD is out of control. What started in my left leg is now in my right foot and both hands. I see a pain management Dr who uses ketamine to help me with the pain. He's wonderful. He's even on the news from Time to time. His name is Ashraf Hanna. He is in Clearwater Florida and sees people from all over the country.. I also developed Gastropyrisis. It's a disease where my stomach doesn't empty. Instead my food comes back up sometimes even when I'm sleeping. I take several medications for my stomach. I'm also taking gabapentin and methadone for my RSD. It does spread. I've met a few people who have it full body. The disease has been around for over 100 years. It started back in world War 2. Dr's couldn't understand why soldiers who had to have a limb amputated were in this insane pain. At the time they called it phantom pain. The patients were given high doses of morphine to control their pain. Sometimes it worked and others would scream constantly. It has only been a few years since the Fda began to recognize it as a chronic pain. I hope I've been able to answer your questions. If I can help I will… In peace ✌ ❤ 🌟 Mary

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@mary121658

I've had RSD for 7 years now. It started after a total hip replacement. I woke up screaming and had drop foot. You are right about one thing. The weather plays alot with this disease. I live in Florida and when hurricanes comes near us and the barometric pressure changes my RSD is out of control. What started in my left leg is now in my right foot and both hands. I see a pain management Dr who uses ketamine to help me with the pain. He's wonderful. He's even on the news from Time to time. His name is Ashraf Hanna. He is in Clearwater Florida and sees people from all over the country.. I also developed Gastropyrisis. It's a disease where my stomach doesn't empty. Instead my food comes back up sometimes even when I'm sleeping. I take several medications for my stomach. I'm also taking gabapentin and methadone for my RSD. It does spread. I've met a few people who have it full body. The disease has been around for over 100 years. It started back in world War 2. Dr's couldn't understand why soldiers who had to have a limb amputated were in this insane pain. At the time they called it phantom pain. The patients were given high doses of morphine to control their pain. Sometimes it worked and others would scream constantly. It has only been a few years since the Fda began to recognize it as a chronic pain. I hope I've been able to answer your questions. If I can help I will… In peace ✌ ❤ 🌟 Mary

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Thank you for your information I'm only 45 and I would love to get the ketamine treatment, but unfortunately I can't afford it and my insurance won't cover or reimburse any of it. I like near Philadelphia and have only heard amazing things about this clinic. And the clinic even tried to negotiate with my insurance, but with no luck. So at this point I have spinal stimulator that works for my arms. But it seems that my health has deteriorated since I've been diagnosed, which I have heard from some of the other people I've been speaking with. Feel free to chat anytime or just vent. Renee

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@rsnowflake

Thank you for your information I'm only 45 and I would love to get the ketamine treatment, but unfortunately I can't afford it and my insurance won't cover or reimburse any of it. I like near Philadelphia and have only heard amazing things about this clinic. And the clinic even tried to negotiate with my insurance, but with no luck. So at this point I have spinal stimulator that works for my arms. But it seems that my health has deteriorated since I've been diagnosed, which I have heard from some of the other people I've been speaking with. Feel free to chat anytime or just vent. Renee

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Hi I'm sorry you have this disease. It can be very complicated as yes it is different for everyone. You are still young. I'm 60 now and deal with it daily. I'm one of those people who get ketamine infusions and then within a few days the pain slowly comes back. I'm sorry your insurance won't cover it but I think if you get just an appointment with Dr Hanna to see if he can help with your problem it may be to your benefit. I've seen him work with people who have financial difficulties. Also you can get in touch with the Rsd/CRPS. Association in Connecticut. They also have helped people as well. Google for the phone number and ask to speak to Jim Broatch. He's the president.. He's a very kind man who talked to me a few times when I first got RSD. Good man. He's also on Facebook and there are groups of people who have RSD /CRPS. I really hope you can get in a good group. I personally don't want the stimulator. I have a dear friend who has it and she has gone through a few problems with it. The leads came off and she had to have the surgery again. I wish you luck with it and I hope it helps you. God bless ✌ ❤🌟 Mary Edwards

Liked by rsnowflake

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@mary121658

Hi I'm sorry you have this disease. It can be very complicated as yes it is different for everyone. You are still young. I'm 60 now and deal with it daily. I'm one of those people who get ketamine infusions and then within a few days the pain slowly comes back. I'm sorry your insurance won't cover it but I think if you get just an appointment with Dr Hanna to see if he can help with your problem it may be to your benefit. I've seen him work with people who have financial difficulties. Also you can get in touch with the Rsd/CRPS. Association in Connecticut. They also have helped people as well. Google for the phone number and ask to speak to Jim Broatch. He's the president.. He's a very kind man who talked to me a few times when I first got RSD. Good man. He's also on Facebook and there are groups of people who have RSD /CRPS. I really hope you can get in a good group. I personally don't want the stimulator. I have a dear friend who has it and she has gone through a few problems with it. The leads came off and she had to have the surgery again. I wish you luck with it and I hope it helps you. God bless ✌ ❤🌟 Mary Edwards

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Thank you so much for your kind words and helpful advice. I'll definitely try to contact your doctor and the rsd,/crps association in Connecticut. Please check in any time…I know many people don't know what this horrible disease is like. I had 2 c a neurologist, two psychiatrists, and rheumatologist and MY spinal surgeon and pain management specialist. To get the stimulator approved. But I have a 16 year old daughter who needs my 2b as healthy as I can. That's why I chose to get the spinal stimulator, I was like a pain level 10 every day, it saved my hand and got an 80% improvement in pain. God bless

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@rsnowflake

Thank you so much for your kind words and helpful advice. I'll definitely try to contact your doctor and the rsd,/crps association in Connecticut. Please check in any time…I know many people don't know what this horrible disease is like. I had 2 c a neurologist, two psychiatrists, and rheumatologist and MY spinal surgeon and pain management specialist. To get the stimulator approved. But I have a 16 year old daughter who needs my 2b as healthy as I can. That's why I chose to get the spinal stimulator, I was like a pain level 10 every day, it saved my hand and got an 80% improvement in pain. God bless

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Sorry wasn't sure I mentioned my name I'm Renee!😀

Liked by mary121658

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@rsnowflake

Thank you so much for your kind words and helpful advice. I'll definitely try to contact your doctor and the rsd,/crps association in Connecticut. Please check in any time…I know many people don't know what this horrible disease is like. I had 2 c a neurologist, two psychiatrists, and rheumatologist and MY spinal surgeon and pain management specialist. To get the stimulator approved. But I have a 16 year old daughter who needs my 2b as healthy as I can. That's why I chose to get the spinal stimulator, I was like a pain level 10 every day, it saved my hand and got an 80% improvement in pain. God bless

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Well I'm happy to help anyway I can. Hopefully you can get a few sessions with Dr Hanna and get ketamine treatment.. There are many ways to get help. I'm here for you. Keep in touch and let me know how you are doing. Peace ✌ love ❤ and light 🌟 I send you.
Always, Mary Edwards @@

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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 am so very sorry you are suffering.

I don't think @janetpr meant it is "all in your head" as a "psychological" issue but rather the "physiological" process that takes place in the body with CRPS. Our brain is amazing but also complex, it drives the central nervous system throughout our entire body.

In CRPS, the brain makes pathways to the effected are of our body that is out of proportion to the injury which occurred. The new pathway send pain signals, in which we stop using that area, then glia cells (and free radicals) build up and the process continues, the brain keeps sending signals. By using the area, it is painful but can build a new pathway and tell the painful pathway there is no injury and try to reverse. In explaining it to others, I sometimes refer to phantom limb pain. The pain is very real, the brain is indeed sending pain signals, but out of proportion to what actually exists.

I am very open to both traditional, alternative, functional medicine and research the underlying scientific & physiologica basis for any treatment.

Nice lecture from Dr. Chopra at CRPS /RSD Conference.

My preteen daughter was diagnosed with CRPS (foot) and after weeks of sifting through medical research, abtracts, watching lectures and presentations, speaking with others I've personally come to conclusion for treating her. Build new pathways to the brain by desensitizing "moving & using" her foot. Relearning to walk again. It is a slow process, takes time and perseverance. It is also painful for her but she is improving. In fact, on days she isn't moving, the pain seems to be worse at night.

I am corresponding with other patients and parents of children w CRPS & CRPS patients all over the country and the world. Several are treating their children at Pediatric Pain Rehab Programs such as Boston's Children's, Nemours Orlando, Seattle Children's, Philly CHOP, etc. which 4-5 week daily programs 9-4p, outpatient. I believe there is a program for adults at Mayo. Still a long way to go and teaching her how to manage her disease and equipping her with tools in the future.

She is in outpatient physical therapy, PT at home ~ off crutches now but walking tip toe on her effected foot. Still painful but a little less and gaining function.
Not for everyone, but many patients respond to this treatment, retraining the brain and makes a new pathway to the brain regarding pain response.
Kind Regards.

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@dmac5

@overwhelmed, I am so very sorry you are suffering.

I don't think @janetpr meant it is "all in your head" as a "psychological" issue but rather the "physiological" process that takes place in the body with CRPS. Our brain is amazing but also complex, it drives the central nervous system throughout our entire body.

In CRPS, the brain makes pathways to the effected are of our body that is out of proportion to the injury which occurred. The new pathway send pain signals, in which we stop using that area, then glia cells (and free radicals) build up and the process continues, the brain keeps sending signals. By using the area, it is painful but can build a new pathway and tell the painful pathway there is no injury and try to reverse. In explaining it to others, I sometimes refer to phantom limb pain. The pain is very real, the brain is indeed sending pain signals, but out of proportion to what actually exists.

I am very open to both traditional, alternative, functional medicine and research the underlying scientific & physiologica basis for any treatment.

Nice lecture from Dr. Chopra at CRPS /RSD Conference.

My preteen daughter was diagnosed with CRPS (foot) and after weeks of sifting through medical research, abtracts, watching lectures and presentations, speaking with others I've personally come to conclusion for treating her. Build new pathways to the brain by desensitizing "moving & using" her foot. Relearning to walk again. It is a slow process, takes time and perseverance. It is also painful for her but she is improving. In fact, on days she isn't moving, the pain seems to be worse at night.

I am corresponding with other patients and parents of children w CRPS & CRPS patients all over the country and the world. Several are treating their children at Pediatric Pain Rehab Programs such as Boston's Children's, Nemours Orlando, Seattle Children's, Philly CHOP, etc. which 4-5 week daily programs 9-4p, outpatient. I believe there is a program for adults at Mayo. Still a long way to go and teaching her how to manage her disease and equipping her with tools in the future.

She is in outpatient physical therapy, PT at home ~ off crutches now but walking tip toe on her effected foot. Still painful but a little less and gaining function.
Not for everyone, but many patients respond to this treatment, retraining the brain and makes a new pathway to the brain regarding pain response.
Kind Regards.

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Fascinating! Hypnosis is a way to re-process how we experience pain. It is a powerful intervention. I use some of what another hypnotist uses. A process of giving the "pain" ( I prefer discomfort) a number ; then hypnotically a color and shape. Then back and forth imagine color is lighter; shape is softening and discomfort is decreasing. Then color is fading; shape is much softer; discomfort is fading…back and forth. Re-processing pain… works. Best, Jan

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