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

@daybyday

@bear420, I’m sending good energy your way. I hope the new & increased meds give you more relief over time, in my experience some of them take awhile to kick in. I got a lot of pain relief from acupuncture, but if you try it, make sure it’s someone your doctor recommends (because of the CRPS). The other thought is if your doctor would refer you to biofeedback or a pain psychologist, it might help you cope with the pain. Or there are CDs or free recordings online if you search “guided imagery for pain.”

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I have just started Tomax this year. The doctors just increased my dosage and kind of kicking my butt. I am also been on Gabapentin for some time. They help some with the pain but not much. Still hard to get out and do any thing especially when eyes are sensitive to light. I go to occupational therapy once a week to keep my hand some what moving. Lost most of my finer motor skill in my dominant hand which sucks. The spinal cord stimulators I heard they would have a 50-50 chance that they work but sometimes they make the pain worse.

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@daybyday

@bear420, I’m sending good energy your way. I hope the new & increased meds give you more relief over time, in my experience some of them take awhile to kick in. I got a lot of pain relief from acupuncture, but if you try it, make sure it’s someone your doctor recommends (because of the CRPS). The other thought is if your doctor would refer you to biofeedback or a pain psychologist, it might help you cope with the pain. Or there are CDs or free recordings online if you search “guided imagery for pain.”

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@daybyday I am not much of a regular on this string because thankfully chronic pain is not something I really have.
Drugs do react differently on different people though, that’s for sure. Oxycodone and oxycontin kept me awake all night when I had to take them a couple of times while I had cirrhosis. I don’t know if the cirrhosis was to blame or just my body. I had taken those drugs in the past with no sleeplessness, they did the typical thing and basically knocked me out a bit.
What I really want to know though, this string started with problems after a knee replacement. I have had one and will be having a second time in the not too distant future. Does anyone know how common it is to develop RSD? My knee that was replaced does hurt very much of the time but that’s because the surgeon did not do a good job I think.
JK

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@daybyday

@bear420, I’m sending good energy your way. I hope the new & increased meds give you more relief over time, in my experience some of them take awhile to kick in. I got a lot of pain relief from acupuncture, but if you try it, make sure it’s someone your doctor recommends (because of the CRPS). The other thought is if your doctor would refer you to biofeedback or a pain psychologist, it might help you cope with the pain. Or there are CDs or free recordings online if you search “guided imagery for pain.”

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If I go ahead with Cymbalta I’ll let you know how it works. Still deciding. Wouldn’t it be great to find a drug that would get rid of the pain & stiffness?? It’s good you’re getting OT, my doctor says it’s the most important thing for treating CRPS. I can’t go to OT right now but still do the exercises, if I don’t my hand stiffens up. The fine motor problem is still hard for me, I practice picking dry kidney beans and marbles out of a bowl of dry rice.

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@daybyday

@bear420, I’m sending good energy your way. I hope the new & increased meds give you more relief over time, in my experience some of them take awhile to kick in. I got a lot of pain relief from acupuncture, but if you try it, make sure it’s someone your doctor recommends (because of the CRPS). The other thought is if your doctor would refer you to biofeedback or a pain psychologist, it might help you cope with the pain. Or there are CDs or free recordings online if you search “guided imagery for pain.”

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That it would be awesome to find a drug fights and or slow down stiffness and other side effects of CRPS . Therapy helps my hand alot along with my wrist from stiffing up to bad. One thing I have problem with sometime the effected area starts to itch really baddly and can be rough sometimes. I do not know if that has ever happen to you at all.

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@daybyday

@bear420, I’m sending good energy your way. I hope the new & increased meds give you more relief over time, in my experience some of them take awhile to kick in. I got a lot of pain relief from acupuncture, but if you try it, make sure it’s someone your doctor recommends (because of the CRPS). The other thought is if your doctor would refer you to biofeedback or a pain psychologist, it might help you cope with the pain. Or there are CDs or free recordings online if you search “guided imagery for pain.”

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Yes! I also got tiny white dots on my hands sometimes – do you? Really itchy. Thankfully itching is a lot better but the skin still gets rough. Although, my skin is usually very smooth & shiny on the palm now, very weird-looking. I use a lotion called Cera Ve – it’s at Target, Walgreens, CVS, etc. It’s not cheap but you don’t need much so a bottle lasts a long time (I only use it on hands). It helps with the roughness, not so much with the itching. Putting the hand on something cool, or in cool water, helped me with the itching.

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@daybyday

@bear420, I’m sending good energy your way. I hope the new & increased meds give you more relief over time, in my experience some of them take awhile to kick in. I got a lot of pain relief from acupuncture, but if you try it, make sure it’s someone your doctor recommends (because of the CRPS). The other thought is if your doctor would refer you to biofeedback or a pain psychologist, it might help you cope with the pain. Or there are CDs or free recordings online if you search “guided imagery for pain.”

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Hi @contentandwell – RSD or CRPS (same thing) is considered a rare disease, so it’s not common to develop it. The most common trauma associated with it is a wrist fracture immobilized in a cast (although people do develop it following other injuries – mine was the wrist scenario, but with others it could be a leg injury). Still, it’s a rare disease. RSD/CRPS symptoms & signs are typically: pain out of proportion to the injury, that doesn’t go away as the injury heals, as well as hypersensitivity (some patients can’t tolerate a breeze on their skin), swelling, lack of mobility near the site of injury (my hand froze into a claw at first), muscle and bone loss, and noticeable differences between the affected limb and the healthy limb in skin color, temperature, sweating, hair and nails. If you are having persistent pain in the knee you had replaced, but it’s not severe and you don’t have some other symptoms, chances are it’s not RSD/CRPS. If you do have a lot of the symptoms, ask an orthopedic surgeon you trust (maybe not the one who did the knee replacement that hurts) – an ortho should know what to look for. Re: medications, so true, we all do react differently. Interesting that you had such different reactions to the same drugs! I hope your second knee replacement goes well.

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@daybyday

@bear420, I’m sending good energy your way. I hope the new & increased meds give you more relief over time, in my experience some of them take awhile to kick in. I got a lot of pain relief from acupuncture, but if you try it, make sure it’s someone your doctor recommends (because of the CRPS). The other thought is if your doctor would refer you to biofeedback or a pain psychologist, it might help you cope with the pain. Or there are CDs or free recordings online if you search “guided imagery for pain.”

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I will have to try that on my hand but the worst part of the itching is on my head and face. That makes it really really hard to lay down on you head and sleep. Have you ever tried hydroxyzine generic name they use it for anxiety. I found that pain and anxiety feed each other so that one has help me out. I do not know if you are on any regular pain meds or not. I take hydroxyzine and pain pill middle of night when I wake up hoping to gain another one to two hours of sleep. To bad you can not get different insurance that will help pay for this. Makes person wonder what happened to affordable health Care act. Do you live in Minnesota or Wisconsin because Wisconsin you can get state insurance depends on your income.

Liked by dobe112

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Been dealing with this for years, pain over the top, effect every way of life, is moving thru out my body. Need advice and help to stop this disease. I am allergic to most drugs and most pain medications too. I live in a hell but get up every morning and keep going ,but for how much longer I don’t know? Any help will be welcome ty

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@jacquelinedei

Been dealing with this for years, pain over the top, effect every way of life, is moving thru out my body. Need advice and help to stop this disease. I am allergic to most drugs and most pain medications too. I live in a hell but get up every morning and keep going ,but for how much longer I don’t know? Any help will be welcome ty

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Hello @jacquelinedei and welcome to Connect. I moved your discussion and combined it with an existing discussion on RSD/CRPS. I did this so you could meet the other members already talking about the same things you are experiencing. If you are responding by email, I suggest scrolling to the bottom and clicking on the VIEW & REPLY button so that you can go to the site and read through the messages from other members.

@jacquelinedei, you said you are allergic to most drugs and pain medications, what sort of therapies are you using to try and cope with the pain?

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@daybyday

@bear420, I’m sending good energy your way. I hope the new & increased meds give you more relief over time, in my experience some of them take awhile to kick in. I got a lot of pain relief from acupuncture, but if you try it, make sure it’s someone your doctor recommends (because of the CRPS). The other thought is if your doctor would refer you to biofeedback or a pain psychologist, it might help you cope with the pain. Or there are CDs or free recordings online if you search “guided imagery for pain.”

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@Hello daybyday! So sorry to read about your awful pain; I can empathize 100% and then some. I have suffered severe chronic pain my whole life, (I am 67) and most of those years were spent frantically searching for some relief. It was fruitless until a pain management specialist joined my rheumatologist’s office. He changed my life. Fast forward a few years–I had a spinal neurostimulator implanted about 4 years ago. Prior to that, the pain doctor tried me on all the opiods without much success. The neurostimulator was implanted after 3 epidurals failed to help the pain very long. Getting a spinal stimulator is a drawn–out process. First you have to have to get a temporary one implanted for a few days. If it helps, you get the permanent one. Was it worth it? Sometimes it helps, sometimes it doesn’t. I use a Fentanyl patch and take Neurontin, Tylenol and Requip for Restless Legs Syndrome. Our pain sources are different, daybyday, but pain is pain. Getting a neurostimulator implanted is certainly worth a shot for you. But I can honestly say I don’t know if this implant really helped me. I don’t think I helped you very much, but I had to share my experience with this gadget. Good luck with whatever you choose! Have a good week! Sincerely, Peggy

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@jacquelinedei

Been dealing with this for years, pain over the top, effect every way of life, is moving thru out my body. Need advice and help to stop this disease. I am allergic to most drugs and most pain medications too. I live in a hell but get up every morning and keep going ,but for how much longer I don’t know? Any help will be welcome ty

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Lyrica, Neurontin, tramadol, Trazodone, Cymbalta, Savella, gabardine, Amitriptyline, anything with a tyline not good for me !! all pain meds last one I can take is morphine now. reaction is anaphylaxis and hives inside and out I have allergic reaction. there are more drugs too but these are the ones off the top of my head. In hopes that one would help and that one of the doctors possible new what they were doing instead of just throwing drugs at me. I was hurt on the job in 2008 here Work force safety loves to push drugs down your throat. they have really taken there toll on me I hate drugs the will not let me do OT PT or alterative medication. I do yoga , and bio tens and I have a wave machine to but all seem to be getting less and less help. pain is going up and up. I keep as active as I can. nerve issue in my right arm.

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@jacquelinedei

Been dealing with this for years, pain over the top, effect every way of life, is moving thru out my body. Need advice and help to stop this disease. I am allergic to most drugs and most pain medications too. I live in a hell but get up every morning and keep going ,but for how much longer I don’t know? Any help will be welcome ty

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I was wondering if you have tried a pain psychologist. I have heard they are really good to help with pain management. Some clinics are starting to use Ketamine, pain pumps, and injections . I do not know if you have tried these or are allergic to any of thsrs.

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Get the book PUTTING OUT THE FIRE new hope for RSD/ CRPS by Dr Katinka van der Merwe just out in 2016 she is here in the states.

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@daybyday

@bear420, I’m sending good energy your way. I hope the new & increased meds give you more relief over time, in my experience some of them take awhile to kick in. I got a lot of pain relief from acupuncture, but if you try it, make sure it’s someone your doctor recommends (because of the CRPS). The other thought is if your doctor would refer you to biofeedback or a pain psychologist, it might help you cope with the pain. Or there are CDs or free recordings online if you search “guided imagery for pain.”

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@daybyday, thanks for your response. I am quite sure that the knee that has been replaced just hurts because of other factors, as I said in my original posting. I discovered that the surgeon had used the same knee he has been using for 30 years! I am quite sure that in that amount of time there have been advances. The knee just hurts, pretty much always, but it is not excruciating. Its flexibility is really poor too.
I was just curious about RSD because I will be having the other knee replaced, probably within the next six months. It was scheduled for May but I postponed it because that knee has become bearable most of the time, thanks to exercise, and I just could not think of another lengthy period of inactivity again, so soon after my liver transplant.
JK

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@rmeddings

How was it determined that you actually had crps versus a problem with your implant ??

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I did not have implant I was hurt on the job. it was after a surgery was performed. I was not better in fact I got worse the pain increased 100 % and has been . the discoloration, in my arm and hand spams I have several cold . there is a lot more as the disease’s progress too. other issues raise its ugly head to, stomach ,OIC due to pain meds, muscle spam, itching, burning pain, and this also moves this book goes into all that explain how and what RSD/CPRS is .

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