Anyone ever have RSD?

[DawnCt1]

Or the new name CRPS (complex regional pain syndrome)??? If so, what was y our experience and did it go away?? It is "sympathetic mediated pain" which causes mottling, tissue and joint swelling of a limb usually distal to the point of trauma or surgery.

 

[Obi-Wan Pinobi]

I think that is one of the problems Lauri is dealing with. I seem to remember the RSD but not the CRPS. Basically she goes through bouts where it feels like someone is putting out a cigarette on her or burning her with a curling iron and the affected area gets red and shiny. Is that what you are talking about? If so, she takes Gabapentin to try to keep it in control.

 

[mom2taylorandemily]

We have a very close family friend who has this. His was caused by an accident where his had was crushed, and the Dr.'s tried to mend, and he was left with RSD. It is actually getting worse for him, it is now radiating down both arms now, not just the injured hand.

 

[DawnCt1]

I think that is one of the problems Lauri is dealing with. I seem to remember the RSD but not the CRPS. Basically she goes through bouts where it feels like someone is putting out a cigarette on her or burning her with a curling iron and the affected area gets red and shiny. Is that what you are talking about? If so, she takes Gabapentin to try to keep it in control.

That's it. I too am taking gagapentin and going to PT 3 times a week. Has she made any progress? How long has she had it? Mine is in my right hand. I can get the swelling and the redness down with massage and rubbing with a rough towel, and now I am use a loofa sponge on my palm. I am also carrying a 3 pound weight with me. It looks funny when I go to the mall with a 3 pound weight and put it down on the counter to sign my name. I also "scrubb" a surface with pressure for about 7 minutes 3 times a day. The improvement is short lived but in the three weeks that I have been working at it, I have had significant improvement. Of course when I wake up in the morning I can't make a fist even if I force my fingers into it but I can work up to it. I am using capsacian cream at night to irritate the area and deplete "P factor" whatever the heck that is. The goal is to reset the nervous system so the pain goes back to where it belongs.

 

[DawnCt1]

We have a very close family friend who has this. His was caused by an accident where his had was crushed, and the Dr.'s tried to mend, and he was left with RSD. It is actually getting worse for him, it is now radiating down both arms now, not just the injured hand.

It usually happens more after trauma than surgery. I have heard that it can spread to the unaffected limb.

 

[BibbidiBobbidiBOO]

Wow Dawn, sorry to hear about this. I have never heard of it. I hope yours goes away!

 

[soccerfreak_08]

My cousin was diagnosed with it after being in a car wreck. she has it in her right arm and it is beginning to spread to her shoulders and other arms. I don't know that much about it except that she is in severe pain if someone touches her arm/shoulder.

 

[CindyBeth]

I had it in my foot after I broke my 5th metatasal(sp?). It was many years ago and wasn't fun! I did finally get rid of it but from the time I broke my foot to when I last had a symptom was 1 year. It is slow going. I didn't realize that they had a new name for it.

Taking the medicine for it is new too. They didn't have that for me. I also loved(being sarcastic) how they told me that there is no set cure, they just try things to see what works!

I had severe pain in my foot and it would alternate between being cold and blue to hot and swollen.

The things I tried, lots, I may have forgotten some. They are: moist heat, physical therapy(ultrasound, electric, exercises), biofeedback, nerve blocks(they probably helped the most, but I dislike them!)

So keep working at it and just know that it is slow! But you can recover from it!!!!

 

[DisneyMommyMichelle]

oh my gosh..i have nothing to offer but hugs!

 

[DawnCt1]

I had it in my foot after I broke my 5th metatasal(sp?). It was many years ago and wasn't fun! I did finally get rid of it but from the time I broke my foot to when I last had a symptom was 1 year. It is slow going. I didn't realize that they had a new name for it.

Taking the medicine for it is new too. They didn't have that for me. I also loved(being sarcastic) how they told me that there is no set cure, they just try things to see what works!

I had severe pain in my foot and it would alternate between being cold and blue to hot and swollen.

The things I tried, lots, I may have forgotten some. They are: moist heat, physical therapy(ultrasound, electric, exercises), biofeedback, nerve blocks(they probably helped the most, but I dislike them!)

So keep working at it and just know that it is slow! But you can recover from it!!!!

Cindy Beth, You don't know how encouraged I feel that this can go away! Thank your for posting. A year is temporary for me and if I keep working at it and looking for a treatment that might work, I think it will go away too. My orthopedist thinks it will but that it will be slow going. I can't handwrite with my right hand but I can sign my name now so that is progress. I am really reluctant to have a nerve block, I hate needles. My hand is always warm and a mottley red. It is also always swollen.

 

[DawnCt1]

Wow Dawn, sorry to hear about this. I have never heard of it. I hope yours goes away!

I never heard of it either....until I got it. I went to a health support board to find out about it but I was very discouraged. No one there has gotton better. 90% of them don't work. When one girl posted that she was cured they jumped all over her for giving "new comers" false hope. She said that hers went away and it had been gone for 5 years so she felt like she was cured. Then the "threats" came; "if you get injured again, it will come back with a vengence"! Now tell me, who wants to go to a board like that?

 

[BibbidiBobbidiBOO]

I never heard of it either....until I got it. I went to a health support board to find out about it but I was very discouraged. No one there has gotton better. 90% of them don't work. When one girl posted that she was cured they jumped all over her for giving "new comers" false hope. She said that hers went away and it had been gone for 5 years so she felt like she was cured. Then the "threats" came; "if you get injured again, it will come back with a vengence"! Now tell me, who wants to go to a board like that?

It may be that the people who post on these types of health boards are the extreme worst outcomes. I have kind of found that out myself on a board about "endometrial ablations" that I was reading. I think more people post on these specific boards when things have gone wrong. Others have gone on with their life and don't post! Keep up a positive attitude, I am sure you will do well!

 

[DawnCt1]

It may be that the people who post on these types of health boards are the extreme worst outcomes. I have kind of found that out myself on a board about "endometrial ablations" that I was reading. I think more people post on these specific boards when things have gone wrong. Others have gone on with their life and don't post! Keep up a positive attitude, I am sure you will do well!

I agree. It was my first exposure to a health support board, I guess I have been lucky. I thought through it and figured why would anyone who got better go there unless it was to offer encouragement based on their own experience. I saw what happened when "Jen" did so. It wasn't warmly received. I was happy to hear it and I told her so.

 

[debbi801]

Yes and it has never gone away completely. Although, mine is in my foot. Got it after breaking my heel bone 3 years ago. PT helped considerably, as do exercises I do at home. Meds never did much for me.

I still get intermittent flare ups, especially if I've been doing a lot of walking and/or standing.

 

[dennis99ss]

I have never had it, but, I did do some research on it when it came up a time or two in some matters I was dealing with.

The simple way for me to describe wjhat I was told about RSD, is that the body's nerves act as a highway system. If you have something that causes pain in your foot, the nerves transmit the message up the legs, to the spinal cord, to the brain, and then back down again. When the person is suffering from RSD, the pain symptom makes it up the highway, but, then it gets stuck in traffic on the loop, and continues to go around and around, although the initial pain causing episode has since stopped sending the signal that pain is present.

It used to be, just a couple of years ago, that medication was ineffective, as a result of the nerve involvement. Sounds like they may have isolated the trigger a little better.

The syndrome has been around forever, but, I think it was first identified during WWI or WWII, but it was misunderstood. I think in the 80's or 90's the medical community started to realize that RSD was an actual new syndrome, as opposed to other pain syndromes or motivations.

Good luck with it.

 

[CindyBeth]

Cindy Beth, You don't know how encouraged I feel that this can go away! Thank your for posting.

I hope that I did encourage you! Since it takes awhile to get rid of this, just keep postivie and celebrate any little improvement!!!!

Two things I want to tell you,

1st - I had 2 nerve blocks, and like I said before, I disliked it alot, BUT I had the most improvement after each one. They did make a big difference! So keep that in mind, even don't you don't like needles. And actually for my foot, they had to put it in my back, so you don't even have to see what they are doing.

2nd - Two years ago, I severely sprained the ankle on the same side that I had the RSD on. I had even gone on vacation with it before I realized how bad it was(did it just a couple of days before). I made it so much worse and had swelling, brusing and discoloration from my toes up to my knee. After the trip, the dr. wanted to put me in a plaster cast. I did some research on RSD before seeing the dr. (Cuz' I was soooo scared it would return!!!!) and learned that plaster casts can help cause the RSD to return! So I wouldn't let him, got an air cast instead and kept the cast off as much as possible. Anyways, the RSD did not return!!!! So, even if you have had it once it is possible that it won't come back! Sorry so long!!!!

 

[DawnCt1]

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2nd - Two years ago, I severely sprained the ankle on the same side that I had the RSD on. I had even gone on vacation with it before I realized how bad it was(did it just a couple of days before). I made it so much worse and had swelling, brusing and discoloration from my toes up to my knee. After the trip, the dr. wanted to put me in a plaster cast. I did some research on RSD before seeing the dr. (Cuz' I was soooo scared it would return!!!!) and learned that plaster casts can help cause the RSD to return! So I wouldn't let him, got an air cast instead and kept the cast off as much as possible. Anyways, the RSD did not return!!!! So, even if you have had it once it is possible that it won't come back! Sorry so long!!!!

I am going to keep up with the PT and if I don't see gradual improvement, I will resort to the nerve block. For me, the primary concern isn't the pain, I don't like the pain, but I can deal with it. Its the loss of function. I am not surprised that the plaster cast would contribute to RSD. My doc said its the combination of severe pain and immobility. In my case, my shoulder movement had to be restricted because of the tendon tears, and attachment to bone. The RSD came on rather suddenly as well. I noticed increased sweating under my right arm within a week. I thought of the sympathetic nervous system but dismissed it as improbable. The hand swelling started soon after my first post op visit. The Physical therapist dismissed it as normal post op swelling. I am now going to another PT. My surgeon was angry that it wasn't noticed. I am also encouraged that yours didn't come back, even with a severe injury. Thanks again!

 

[miste76]

DawnCT- I also have been diagnosed with RSD. I was diagnosed after ankle surgery in the summer of 1999. It took me several months to be able to put a sock on (without pain killers), I spent 6 months using crutches and spent another 6 months using a cane.
I was in the army when this happened... and physical therapy may have been helping a little... but there were no obvious improvements. I had two spinal blocks and one block at the ankle. There were many different drugs that I was prescribed, I was sent through a pain management class and had many people that made me feel like I was crazy.
Approx one year after the surgery, I seperated from the army and made up my mind to get through my problems. It took a long time and I still have some minor problems (I have flare-ups that are usually associated with stress) but overall, I can function normally. I can't predict when I'll have an episode- but when I do it's usually short lived, maybe a day or so.)
Keep a good outlook on things. It was easy to feel sorry for myself when it first happened... especially when I did internet research about people that had RSD spreading to their whole body. Mine didn't spread... and whether or not it's medically possible (I don't know) I feel as though I mentally overcame my condition.
Oh yea, and don't let it ever spoil a trip to WDW... I just used a wheelchair when I was too sore to walk. My family and I still had a great time that year!!!

 

[Claire L]

Just found this thread!

I also have RSD aka CRPS from an assault 3 1/2 years ago. I am slowly getting better but do have set backs every now and then, sometimes for no known reason. I ahve 3 guanethidine blocks about 5 to 6 months after the injusy and various other test but now mainly just physio and hydrotherapy (which is not often as there in no where near me that does it). It initially affected my left arm/shoulder but has had a knock on effect into my back and neck, it did rotate my spine at one point quite badly and although better it is not back to how it was before!

Anyway take care.

Claire

 

[DawnCt1]

Thanks for posting. I started accupuncture last week. I have had two treatments but will not let him put the needles iin my affected side. I did notice sensations on the affected side during the procedure. The last time he did areas on my back and I noticed nothing. In fact it seemed that I had a lot more stiffness in my fingers the next day. Today, I am doing better than yesterday. At least accupuncture works for appetite cravings so I can stick to my diet. (Atkins). Maybe I need to be in ketosis to shock my CNS. Nothing makes sense about this problem. The good news is I don't have hypersensitivity of my skin anymore. My finger joints are sore when I force my hand closed or open but I am not "in pain" like so many with RSD. My issues are mobility and function.