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

@colleenyoung

Hi @overwhelmed,
Thank you for this comprehensive post about CRPS
Here is the video link to the research you mentioned, done by Sean Mackey, MD, PhD, is a Professor of Anesthesiology at Stanford University Published on Mar. 19, 2013.

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Watched the video. It was great. A lot of good information

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Welcome new members @tonyagann and @jonjon812 to this discussion group about complex regional pain syndrome (CRPS). We look forward to getting to know you. Where does CRPS affect you? How do you manage the pain?

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I was diagnosed with CRPS in my left shoulder. Has anyone ever had it in their shoulders. I had it in my ankle when I was 13 and it went into remission and now it’s back. I feel almost like I’m being bullied by my doctors. I had a nerve block in my neck to see if it would help and while I was waking up the doctor told me the next one he wants me to do while I’m awake with a local anesthetic. I thought he was crazy. I had a panic attack when they went for the IV. Now I’m not a baby when I come to needles, it was the thought of them navigating through my neck with a needle. Later while I was at physical therapy my physical therapist informed my mom that I should probably see a counselor and that the doctor who did my nerve block doesn’t think it CRPS. So can you help me understand why he would want to do another never block if it’s not CRPS and why awake. My PT says it’s rare to have it in the shoulder because it usually goes into the hands and feet. I’m very frustrated and tired of hurting.

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@penny2017

I was diagnosed with CRPS in my left shoulder. Has anyone ever had it in their shoulders. I had it in my ankle when I was 13 and it went into remission and now it’s back. I feel almost like I’m being bullied by my doctors. I had a nerve block in my neck to see if it would help and while I was waking up the doctor told me the next one he wants me to do while I’m awake with a local anesthetic. I thought he was crazy. I had a panic attack when they went for the IV. Now I’m not a baby when I come to needles, it was the thought of them navigating through my neck with a needle. Later while I was at physical therapy my physical therapist informed my mom that I should probably see a counselor and that the doctor who did my nerve block doesn’t think it CRPS. So can you help me understand why he would want to do another never block if it’s not CRPS and why awake. My PT says it’s rare to have it in the shoulder because it usually goes into the hands and feet. I’m very frustrated and tired of hurting.

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Hello @penny2017, welcome to Connect. You may notice I moved your discussion and combined it with an existing discussion on CRPS/RSD. I did this so you could could meet the existing members that are already discussing CRPS. If you are replying by email, I suggest clicking on VIEW & REPLY so you can see the whole discussion and jump in where you feel comfortable. @penny2017, if you are comfortable sharing, did you end up having the nerve block in your neck and did it help?

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@penny2017

I was diagnosed with CRPS in my left shoulder. Has anyone ever had it in their shoulders. I had it in my ankle when I was 13 and it went into remission and now it’s back. I feel almost like I’m being bullied by my doctors. I had a nerve block in my neck to see if it would help and while I was waking up the doctor told me the next one he wants me to do while I’m awake with a local anesthetic. I thought he was crazy. I had a panic attack when they went for the IV. Now I’m not a baby when I come to needles, it was the thought of them navigating through my neck with a needle. Later while I was at physical therapy my physical therapist informed my mom that I should probably see a counselor and that the doctor who did my nerve block doesn’t think it CRPS. So can you help me understand why he would want to do another never block if it’s not CRPS and why awake. My PT says it’s rare to have it in the shoulder because it usually goes into the hands and feet. I’m very frustrated and tired of hurting.

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The nerve block was in my neck, it lasted maybe 2 days.

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hi sorry i just got done doing a trial run of ketamine infusion 5 day back to back at the highest doses ever given without the coma so far its working great i gotta do a documentary on pain n ketamine high dosage.

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@janetpr

One way to control RSD is to undergo therapy, whereby you retrain the brain to understand that there is no cause for pain, by exposing yourself to the pain intentionally. After a short while your brain will realize there is in fact no injury or cause for pain and you can go about your normal life. However, every so often it will rear it’s ugly head and you’ll have to do the therapy. I am a cronic pain sufferer, however, at least I do not have to deal with this all the time anymore. Hope this helps.

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I need surgery on the thumb joint on the hand with rsd in it. Long ago diagnosed and treated early. I am hoping to find a doctor that can treat my thumb without placing a cast on it for six weeks. The doctors in my area have no knowledge re rsd, as per their own admission.
Hoping someone here can help me, but as I just signed on, it appears that to make contact with someone with the same experience will be extremely hard. Hope not. Thankfully, I don't have to take high doses of pain killers often and then I just stack up on over the counter drugs. Good luck.

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@medic7054

I take Lyrica as well, but at a much higher dose…..300mg 4xday for Idiopathic Peripheral Neuropathy. I developed neuropathy following a spine injury in 2003. I had two spinal stimulators placed in 2008, but they were only affective for 5 years. I was on opiods for 8 years as well. Last spring I went through Mayo’s Pain Management Center which got me off the opiods and taught me how to manage the pain with only OTC meds and Lyrica. I am currently managing things pretty well with infrequent “bad ” days.

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I am have crps in both feet i am going to the Pain rehab program next week. It is good to hear some who has gone thru the program.

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@sandratao

I need surgery on the thumb joint on the hand with rsd in it. Long ago diagnosed and treated early. I am hoping to find a doctor that can treat my thumb without placing a cast on it for six weeks. The doctors in my area have no knowledge re rsd, as per their own admission.
Hoping someone here can help me, but as I just signed on, it appears that to make contact with someone with the same experience will be extremely hard. Hope not. Thankfully, I don't have to take high doses of pain killers often and then I just stack up on over the counter drugs. Good luck.

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I have RSD and the surgery was done of a mass removed in my thumb which lead to where I lost mobility in the rest of my fingers however with therpy I gained the some mobility but still have weakenss sensitivity sharp pains and cant make a first . Now my hand surgery was done in April. I too take tramadol and Gabapentin. I applied for disability but Do you think that even though some look at us and cant see our pain that we can win our case when it comes to trying to get your disability I'm 43 years old

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@cyme

I have RSD and the surgery was done of a mass removed in my thumb which lead to where I lost mobility in the rest of my fingers however with therpy I gained the some mobility but still have weakenss sensitivity sharp pains and cant make a first . Now my hand surgery was done in April. I too take tramadol and Gabapentin. I applied for disability but Do you think that even though some look at us and cant see our pain that we can win our case when it comes to trying to get your disability I'm 43 years old

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Also I forgot I had a nerver block on August 28 and it helped with the pain to a certain degree but for only 2 days and the pain is back

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@penny2017

The nerve block was in my neck, it lasted maybe 2 days.

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I had nerve block in my neck August 28. I dont want to do another either. The pain did go away for about 2 days but now I'm feeling the pain again but I will say not as bad as it was. But its painful

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@cyme

Also I forgot I had a nerver block on August 28 and it helped with the pain to a certain degree but for only 2 days and the pain is back

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@cyme Again, get an attorney. If there is any question, you won't get a nickel if you do not have an attorney, and Medicare pays the attorney.

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I had an implant in my back which has helped a bit and take gabapentin. Dr Beuer in Florissant. Mo. Christian Hospital NE

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@penny2017

I was diagnosed with CRPS in my left shoulder. Has anyone ever had it in their shoulders. I had it in my ankle when I was 13 and it went into remission and now it’s back. I feel almost like I’m being bullied by my doctors. I had a nerve block in my neck to see if it would help and while I was waking up the doctor told me the next one he wants me to do while I’m awake with a local anesthetic. I thought he was crazy. I had a panic attack when they went for the IV. Now I’m not a baby when I come to needles, it was the thought of them navigating through my neck with a needle. Later while I was at physical therapy my physical therapist informed my mom that I should probably see a counselor and that the doctor who did my nerve block doesn’t think it CRPS. So can you help me understand why he would want to do another never block if it’s not CRPS and why awake. My PT says it’s rare to have it in the shoulder because it usually goes into the hands and feet. I’m very frustrated and tired of hurting.

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Yes in hands, shoulders, arms neck. Nerve block nothing. I had the implant in back with only local. Whew. It helped a bit and a bit with spinal defects. Not a big change but some.
Dr Beuer Florissant. Mo. Christian Hospital NE. He may be able to suggest a doctor or pain clinic where u live.

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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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