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

@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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Have you heard of any one having it in there face and both eyes. The doctors do not know what they can do for me right now. I just like some relief from buring in my eyes. I also settled in my lower right rib cage. Really hard to do anything because some part of your body hurting bad.

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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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Hello @bear420, and welcome to Connect. I moved your discussion and combined it with an existing discussion taking place on CRPS. I did this so you could meet all of the other members discussing CRPS. If you are responding by email, I urge you to click on the VIEW & REPLY button at the bottom of this message so that you can read through the many messages posted by a lot of members about CRPS.

Thank you @janetdh for greeting bear420.

@bear420, I can hear the frustration and concern over the unknown. Have you considered getting a second opinion or having your current physician’s give you a referral for a second opinion? Are you currently taking any medications?

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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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Yes I am currently taking medication for this. I go back down to the University of Minnesota on April 7th again and they’re going to see what they can do. It just seems that nobody really has an answer for anything even on medication they’re all like it’s a guessing game. Being a single parent and makes it even harder but I’m glad my son old enough to take care of himself it’s just really hard when it’s in the eyes in the face and wears a person out for the day. I just hard to do anything cuz you can’t watch TV really hard to type on the phone so most of my messages are dictated on this phone right now everything is just more complicated right now.

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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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I sympathize, I wind up dictating on my phone a lot, too, because it’s in my left hand/arm. Are you going to a pain center? The one I went to did multiple kinds of therapy for CRPS…the pain was never gone but was more manageable, which made a big difference. (I’d still be going there if I could afford to go to the doctor.)

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What kind of therapies did they do for CRPS.

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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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I was wpndeing

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@bear420

What kind of therapies did they do for CRPS.

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Hi @bear420 – Besides medication, they treat CRPS with nerve blocks, acupuncture, biofeedback, a pain psychologist, a social worker, and are connected with physical & occupational therapists who are really experienced in treating CRPS. I had a lot less pain when I was going there, but I can’t afford it anymore (I have a bad insurance situation). The clinic is United Pain Center in downtown St. Paul, the doctor I saw there is Dr. Todd Hess. If you want to get a second opinion there, tell the desk you have CRPS because they treat a lot of other pain conditions.

I hope you find something that will help you. CRPS is awful. Hang in there!

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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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I’m sorry @bear420, I didn’t see your posts until tonight, but I hope my answer about therapies is helpful & I forgot to say, I hope your trip to the University of Minnesota went well.

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@bear420

What kind of therapies did they do for CRPS.

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I have tried nerve block and physical therapy but they did not help. Occupational therapy helps my hand some but lost most of my fine motor skills which sucks. My doctor’s appointment went kind ok they did not confirm or deny that it was CRPS. In increased one of my meds back in two months see how I am doing. Another two months with screwed up eye balls and face. I am also on different medications to see if that helps out. Right now I can sleep for three hours instead of two.

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@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

@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 look into acupuncture in our area we do not have no one and same with the pain psychologist. I guess that’s what happens when you live too far in the Northwoods. They said the new meds will take one month to increase to new dose and then hopefully in that month I’ll start feeling better. I just suckes right now it’s mainly a lot with my eyes and my face and nobody can seem to have an answer by just keep passing it down to someone else. Doctor’s think it might be CRPS but then they just cannot deny it or confirm what it is and that’s the hard part. So in mean time I have to wait another 2 months that before month total till I have another doctor’s appointment and then they will look more into it because I’ll be on my new meds full dose. Right now it just like living day-to-day and I never know what I’m going to wake up to. Half the time I never know what day I’m because with two to three hours of sleep in the middle of the night really can mess up a day.

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

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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’m sorry you don’t have any way to try those things up north. Hopefully the new meds will work for you. I have taken a couple that took a month or more to get up to full strength, so I know what you mean. The thing with CRPS is, even if they do tell you that’s what’s causing your face and eye symptoms, it’s just more questions…will it get better? When? What will work best for the pain? Will it spread more? etc. As you know. I hope the meds help with sleep, that’s one of the hardest things about this.

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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 am hopping that the new meds work but like you said it will take a month to know. Sometimes I do not want to know if CRPS has spread. I think it might be easier to deal with the unkown at least you have ideal what it may be. I have tried everything for sleep random nothing works for me either. Scariest part is I am starting to get adjusted to my goofy sleep schedule. I gusses coffee at two clock in morning not so bad because the house is still quiet.

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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’s true, at least the house is peaceful in the middle of the night. I understand why you might prefer not knowing if the CRPS has spread. It’s not very comforting to find out. The medication that has worked best for me is Topamax, but it doesn’t completely get rid of the pain, so my doctor suggested also taking Cymbalta. Not sure what to do, as it will be more side effects and more $ in prescriptions. I’ve heard some people do well on gabapentin or on Lyrica. I haven’t tried Lyrica. I didn’t take gabapentin too long because I couldn’t think straight on it. (But some people think Topamax is worse that way.) Also did you know some people get a spinal cord stimulator implanted for pain relief? I believe it’s for people who don’t have much luck with the medications. I met one person who has had good pain control with the implant but another didn’t think it helped much. I guess it’s like the drugs, different for everybody.

Liked by peggyj4411

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