[CZZ74]

Hi I wanted to see if anyone had a "new" accident that fired up there exsisting rsd.

How bad was the flare,?

how long did it last?
and what elements of rsd did it bring back(alloydina, lesions, edema, burning etc)

at what force that you had somewhat under control?

and again how long did the "return" last?
with my last fall, I am back to gasoline type burning on jy knee- I honestly had forgotten just hw bad it was. Now alloydina active over both legs particarly knees, and severe edema and lesion. Thank you DC

[kladams86]

Hi DC

I, too have had accidents that caused a flare-up. My RSD started in my foot. I had been in remission for about 3 years, but then a motorized wheelchair (1,000 lbs) rolled over the same foot, and it caused a relapse. It went back to the burning pain (but always freezing cold), swelling, sweating, color-changes, etc. It only lasted about 4 months because I was quickly put onto a new medicine (had been on neurontin for 5 years, and they switched me to lyrica) and it helped a bunch and i went back into remission.

Just about a year ago, though, I broke my ribs. They weren't healing well, so a new dr. decided to do cortisone shots around my sternum. He hit a nerve, and CRPS 2 began in my chest. I have the gasoline burning feeling, as well as electric shock pains and stuff. I have discoloration and an indent about 2 inchest long and an inch wide where the cortisone was injected in my chest. I'm still dealing with it, which is really frustrating, because it feels like it's getting worse every day.

I hope that you are able to get some relief. Know that remission IS possible. Just keep fighting and keep staying strong!

[CZZ74]

Originally Posted by kladams86

Hi DC

I, too have had accidents that caused a flare-up. My RSD started in my foot. I had been in remission for about 3 years, but then a motorized wheelchair (1,000 lbs) rolled over the same foot, and it caused a relapse. It went back to the burning pain (but always freezing cold), swelling, sweating, color-changes, etc. It only lasted about 4 months because I was quickly put onto a new medicine (had been on neurontin for 5 years, and they switched me to lyrica) and it helped a bunch and i went back into remission.

Just about a year ago, though, I broke my ribs. They weren't healing well, so a new Dr. decided to do cortisone shots around my sternum. He hit a nerve, and CRPS 2 began in my chest. I have the gasoline burning feeling, as well as electric shock pains and stuff. I have discoloration and an indent about 2 in chest long and an inch wide where the cortisone was injected in my chest. I'm still dealing with it, which is really frustrating, because it feels like it's getting worse every day.

I hope that you are able to get some relief. Know that remission IS possible. Just keep fighting and keep staying strong!

Thanks kla- sorry to hear of all your pain, yes exactly so aggravating isn't it. I was so surprised at the intensity. I think RSD is opportunistic. It took about 3 days for "IT" to find my knee injuries but when it did it just went at them with a vengeance. I too get the electrical shock ls- but for me they are a warning sign a lesion is starting. nothing is worse in the pain department than a lesion for me. Take care and thank you again. dc

[loretta]

Originally Posted by CZZ74

Hi I wanted to see if anyone had a "new" accident that fired up there exsisting rsd.

How bad was the flare,?

how long did it last?
and what elements of rsd did it bring back(alloydina, lesions, edema, burning etc)

at what force that you had somewhat under control?

and again how long did the "return" last?
with my last fall, I am back to gasoline type burning on jy knee- I honestly had forgotten just hw bad it was. Now alloydina active over both legs particarly knees, and severe edema and lesion. Thank you DC

Hi DC, I am so sorry your RSD is back. I also had the blessing of having two remissions. following pt and massage therapy. Original RSD came following surgery. Each remission was about 1 1/2 years. I didn't know I had RSD, just was told frozen shoulder. Was water skiing and felt pull in hand-swelling, discoloration, loss of use, alloydina, edema, frozen hand-misdiagnosed as RA, then changed Drs. and diagnosed RSD. That was almost 10 years ago. I did get part use of hand back, about 50% and thankfully have full use of other hand , legs, feet. Have full body and internal RSD-I know that is not what you want to hear, but it doesn't always go full body. Sooner the treatment the better. Do you have a Dr. experienced in RSD.
I didn't get a good Dr. for another 4 years after the water skiing accident.
Then I fell at a gas station and ruptured a disk in neck. I don't think I had found the good Dr. yet.
I know physical therapy and massage therapy helped me. Tens Unit and Desensitizing- take 5-6 plastic bowls and put cotton, rice, coffee grounds, pieces of fabric, etc run your hands, feets thru different bowls. It gradually desensitizes , which is a good thing.
I agree with you on the lesions. I won't go thru that pain and cleaning without being in hospital. Mine got bad infections.
Please don't assume you won't go back into remission- It is very possible, I just had such a long delay in diagnosis, so wasn't on treatment besides pt and massage, which actually twice put me into remission.
We can, and so sorry you are going thru this. Keep in touch, we learn so much from each other and the encouragment and support is wonderful. Thinking of you, your friend, loretta

[hannah1234]

KLA- WOW I have heard nothing but bad things about injections. I am soo sorry, and for him to hit a nerve makes it a thousand times worse. Hang in there!

I had surgery which caused my rsd in Janurary. I had a series of stellate ganglieon blocks until May when I finally got to my doctor where I am still. June 6th I had my SCS implanted. After that I was in remission for 6 months!!!!!!!! Some people say that they have spread with the SCS but my doctor is so careful in giving extra anesthetic, and post operative and pre op care. So after I was in remission for 6 months, I was in Oregon at my sisters house, and I was cooking boiling an artichoke and I took it out with tongs and the water came through and burnt my arm. My arm then within a matter of minutes flared up, and I felt it spreaed across my back of my shoulders, down my back, and an hour or so later when i stood up my leg was weak and on fire.

I then got back home and my dr and I decided to go forth with ketamine because of such the rapid spread that wasnt getting under control. It was one of the scariest times of my life. So we got ketamine, and I had to do a series of it, and then about every 3-5 weeks for the next five months after that. I was FINALLY at a point of where I was human again, I was off 6 of the meds I was on, and only on one to sleep and Cymbalta, and was an energizer bunny after each infusion because I felt good. So I was at the point of my infusion was lasting over 6-7 weeks!!! which is awesome!

So I had been needing my wisdom teeth out for two years, they were growing under my molars and had SOOO many sleepless nights because of them. So I was finally at a good place in life, I decided to get them out. I could only get one side at a time, so my left side came out. We did a nerve block before with my doctor, and I went straight over to my surgeon. My surgeon spoke with my doctor prior to the surgery, and not the anesthesiologist, and I think i wish i would of had him speak to him as well. My oral surgeon is an anesthesiologist, but he felt more comfortable bringing in someone to do my anesthesia. He was the best dental anesthesiologist in the Beverly Hills area, according to a few people so I decided to go with him. All was good until I woke up. all i thought was my rsd is back... but its not burning but this HURTS WAY MORE THAN ITS SUPPOSED TO. I have not had any burning pain in the last 4 days shy of a month, but its pain thats unreal. If you read my other post that I posted it will give more info.

Oh and also, somewhere in this time when I was in remission, I was ironing my sweater for church, and the steam came out from the iron like there was pressure built up and then it melted my skin on my stomach by my belly button. Literally melted it down. That burn hurt soooo bad. I had ketamine a few days after to prevent a flare in my back, arm or leg which it did!!! but the skin was still melted and still had to heal, and as we all know anything with rsd makes it 100000 times more painful!!!!!

I think everytime we flare it just depends where it is and how it comes, if we have another surgery, if we have a burn, ETC. I hope I was able to answer your question a little... there is always HOPE... as hard as it is to see over the mountain, we have to have faith that we will get there. Right now, I am in so much pain and am in the doubt that it will ever get better. but typing this out gave me a little encouragement to keep on going after all I have been though. If you have any questions at all feel free to ask me more...

[CZZ74]

[QUOTE=hannah1234;664601]KLA- WOW I have heard nothing but bad things about injections. I am soo sorry, and for him to hit a nerve makes it a thousand times worse. Hang in there!

I had surgery which caused my rsd in January. I had a series of stellate ganglieon blocks until May when I finally got to my doctor where I am still. June 6th I had my SCS implanted. After that I was in remission for 6 months!!!!!!!! Some people say that they have spread with the SCS but my doctor is so careful in giving extra anesthetic, and post operative and pre op care. So after I was in remission for 6 months, I was in Oregon at my sisters house, and I was cooking boiling an artichoke and I took it out with tongs and the water came through and burnt my arm. My arm then within a matter of minutes flared up, and I felt it spread across my back of my shoulders, down my back, and an hour or so later when i stood up my leg was weak and on fire. Thank you again so much Hannah, i hope things improve for you very soon. I truly do feel your pain- except i can not imagine how your stomach must hurt. as i have said before and you said RSD is so opportunist- when i have a new injury it may take a day or two but when it finds it the pain goes from normal to surreal. Thank you again so much. dc

I then got back home and my Dr and I decided to go forth with ketamine because of such the rapid spread that wasn't getting under control. It was one of the scariest times of my life. So we got ketamine, and I had to do a series of it, and then about every 3-5 weeks for the next five months after that. I was FINALLY at a point of where I was human again, I was off 6 of the meds I was on, and only on one to sleep and Cymbalta, and was an energizer bunny after each infusion because I felt good. So I was at the point of my infusion was lasting over 6-7 weeks!!! which is awesome!

So I had been needing my wisdom teeth out for two years, they were growing under my molars and had SOOO many sleepless nights because of them. So I was finally at a good place in life, I decided to get them out. I could only get one side at a time, so my left side came out. We did a nerve block before with my doctor, and I went straight over to my surgeon. My surgeon spoke with my doctor prior to the surgery, and not the anesthesiologist, and I think i wish i would of had him speak to him as well. My oral surgeon is an anesthesiologist, but he felt more comfortable bringing in someone to do my anesthesia. He was the best dental anesthesiologist in the Beverly Hills area, according to a few people so I decided to go with him. All was good until I woke up. all i thought was my rsd is back... but its not burning but this HURTS WAY MORE THAN ITS SUPPOSED TO. I have not had any burning pain in the last 4 days shy of a month, but its pain thats unreal. If you read my other post that I posted it will give more info.

Oh and also, somewhere in this time when I was in remission, I was ironing my sweater for church, and the steam came out from the iron like there was pressure built up and then it melted my skin on my stomach by my belly button. Literally melted it down. That burn hurt soooo bad. I had ketamine a few days after to prevent a flare in my back, arm or leg which it did!!! but the skin was still melted and still had toheal, and as we all know anything with rsd makes it 100000 times more painful!!!!!
I think every time we flare it just depends where it is and how it comes, if we have another surgery, if we have a burn, ETC. I hope I was able to answer your question a little... there is always HOPE... as hard as it is to see over the mountain, we have to have faith that we will get there. Right now, I am in so much pain and am in the doubt that it will ever get better. but typing this out gave me a little encouragement to keep on going after all I have been though. If you have any questions at all feel free to ask me more...

I]heal, and as we all know anything with rsd makes it 100000 times more painful!!!

Hannah, thank you for sharing your painful journey and all the hope you are amazingly still hanging on to. I pulled the quote about with rsd it makes things 100000 times more painful because it is so so true.when I am in ER they just can not fathom how such minor injuries or 6 attempts to get an iv in can cause my BP to go sky high from pain. its insane. I have never been in remission. Somehow what i wrote confused everyone and i apologize, what amazed me with this new injury is that i didn't realize i was down a notch or two in severe pain- because what this injury i went back up to where it is totally unacceptable. like a constant 9. I am medicated with big guns to stay at 6 and still often break through to an 8/ But this did make me remember that i was in the 9 pain before for 10 to 12 hours a day. so i guess i am in remission from that . And Dr. schwartzman did get my alloydina completely under control in 2005-2007. So.. I do have more to be thankful for than I realized till this injury. I do have to see the orthopedic specialist for me knees but moved it to next week as this week i have the sleep apnea test which i feel are more important, even though my knees are not working since the fall.

[CZZ74]

Originally Posted by loretta

Hi DC, I am so sorry your RSD is back. I also had the blessing of having two remissions. following pt and massage therapy. Original RSD came following surgery. Each remission was about 1 1/2 years. I didn't know I had RSD, just was told frozen shoulder. Was water skiing and felt pull in hand-swelling, discoloration, loss of use, alloydina, edema, frozen hand-misdiagnosed as RA, then changed Drs. and diagnosed RSD. That was almost 10 years ago. I did get part use of hand back, about 50% and thankfully have full use of other hand , legs, feet. Have full body and internal RSD-I know that is not what you want to hear, but it doesn't always go full body. Sooner the treatment the better. Do you have a Dr. experienced in RSD.
I didn't get a good Dr. for another 4 years after the water skiing accident.
Then I fell at a gas station and ruptured a disk in neck. I don't think I had found the good Dr. yet.
I know physical therapy and massage therapy helped me. Tens Unit and Desensitizing- take 5-6 plastic bowls and put cotton, rice, coffee grounds, pieces of fabric, etc run your hands, feets thru different bowls. It gradually desensitizes , which is a good thing.
I agree with you on the lesions. I won't go thru that pain and cleaning without being in hospital. Mine got bad infections.
Please don't assume you won't go back into remission- It is very possible, I just had such a long delay in diagnosis, so wasn't on treatment besides pt and massage, which actually twice put me into remission.
We can, and so sorry you are going thru this. Keep in touch, we learn so much from each other and the encouragment and support is wonderful. Thinking of you, your friend, loretta

Hi Loretta, thank you so much for posting- it not that it is back its that parts of it that were undercontrol have come back at level 9 its like the tape has decided to start at the begining and replay on that limb. my pain is still high reguarly controlled by alot of pain meds but things like alloydian severe severe burning are aback with a vengence. Im sure with time it will calm down .As far as full body pain and internal rsd Ihave had that for several years now since before the coma treatment. My pelvic area , intenstins are the worst internal area for me and lungs and ribs. more recently I can add irregular heart beat and the fluctating blood pressure from moderatly high to extremely low. Thank you for posting it is always great and helpful to hear from you. sincerely dc