It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


My husband was just diagnosed with RSD. It started two weeks ago after his hip going out and being adjusted at the chiropractor. His foot especially the top and his shin he says burns and if even the sheet rubs it in bed he is screaming. Then the muscles in his entire leg tighten and he has horrible muscle spasms. We have never heard of this before so while doing research I found this website. He has his first appt with a neuro surgeon this week and we have a lot of questions. The biggest thing is he is not a lay back person, he is ALWAYS doing something, he loves to hunt and play with the kids outside among other things. He/we are wondering how and if he will be able to enjoy these things again and also return to work. He works in a factory and is constantly on his feet, right now he can't bare to stand for more than 5 min he cant stand the thought of working and standing for 10 hours on concrete. Thanks for you help =) God Bless!
I just joined this site. I dont know how to chat,,,if at all possible. Ive talked to one person over the phone. A 32 yr old woman in San Fransisco who has spent over 250 thousand so far and is now in Europe to seek more help.

My wish list is to try the Hyperbaric oxygen chamber. less evasive but now I have to fight with insurance to get it approved. Trust me,, RSD is very rare. I have gone to people who say they are experts but have put Ice on my leg and you never put ICE on nerve damage. Please be careful and read all that you can. I lost control because I knew nothing about RSD. Kept saying,,,why me? how did I get this? what is this? Now I feel I know everything and that makes me more normal.

Take care and I can feel your pain. Your friends and family will never know what pain you are going thru. Sometimes I feel so alone but have to fight every second just to survive.

Michelle in San Diego
[QUOTE=Shelbie;4688608]I just joined this site. I dont know how to chat,,,if at all possible. Ive talked to one person over the phone. A 32 yr old woman in San Fransisco who has spent over 250 thousand so far and is now in Europe to seek more help.

My wish list is to try the Hyperbaric oxygen chamber. less evasive but now I have to fight with insurance to get it approved. Trust me,, RSD is very rare. I have gone to people who say they are experts but have put Ice on my leg and you never put ICE on nerve damage. Please be careful and read all that you can. I lost control because I knew nothing about RSD. Kept saying,,,why me? how did I get this? what is this? Now I feel I know everything and that makes me more normal.

Take care and I can feel your pain. Your friends and family will never know what pain you are going thru. Sometimes I feel so alone but have to fight every second just to survive.

Michelle in San Diego[/QUOTE]

Michelle,
Thanks for your good advice! It seems like I've been online nonstop for days now reading what I can on it. Its alot to take in, but i appreciate your input!
[QUOTE=rrtz;4691027]...the id I usually use for posting on boards is "rrtzmd"...for some reason, this board refused to allow any id that had the letters "md" in it...very strange...anyway, trust me when I say I know what I'm talking about...and if you desire confirmation, simply go speak to or write to a neuroscientist at any nearby university...they would probably be more than happy to spend a few minutes explaining why the "Calmare" can't possibly do ANYTHING it claims...however, I wouldn't deny anyone the opportunity to try it -- with the admonition that they would be wise to request a money back if not satisfied guarantee...[/QUOTE]
sorry still dont know if you suffer from rsd or not but since you are so strong against this I have called many rsd support groups and have asked for their research on it mant have said they will go back and sw their members, in addition I have also contacted multiple neurologists to get their take.. I really dont know how or where you get your info but it peaks my curiosity as this may hold non invasive non drug treatment ... i will say thjank you for this pushes me tt do further research ..all of us rsd sufferers need choices and i hope that this can be one.(not for me cause it is expensive ) but others who may afford it could benefit if this turns out to be a true possible alternitive.
god speed
funny thing...Sharp ortho surgeon & Sharp Hospital were the people who ignored me while in the hospital. 3 hrs after waking up felt the pain & started having electrical shocking seizures. They all ignored me. Not one nurse ever called my doc. When doc came in he never answered my questions. Treated me like I had leprosy. Sharp is very big here and not one person knows anything about RSD. Even the physical therapists ignored me for over 1 month until I grabbed a P.T. by the arm and said SOMETHING is wrong with me. They all knew me from my 1st knee replacement and I was a perfect patient. But the 2nd surgery while doing P.T. all I did was cry because I couldnt do any of the exercises. However,,,I will now contact my primary care doc and look into the Calmare treatment. Would also like to try Hyperbaric Oxygen Chamber. I just joined for Grace site. I would like to start writing AMA, all hospitals and insurance companies to get them to take RSD seriously.
Ive told my primary care doc to Youtube RSD and see what "we people" go thru. I still dont know how this site works lol But I come here daily now and appreciate all info that everyone can share.
wow. it is amazing how dr are affraid of us..thy dont know and all of a sudden think of their ins policy... sorry you had to go thru that ,,alot of us have seen the same im sure. with me the hosp just wanted me out said here are some pain killers let me give you a boost through a needle then sent me on my way..sorry just to break!!( my neurologist just called to check on me..you cant find drs like him, he admitts to not knowing near enough about my issue but he trys his best to make sure i get the best treatment .. im lucky with that) and he also answered me re calmare said that it is experimental really rght now with no reall time tested results and though it is promising he would prefferr iI stick with the tried and true first.. and when it is time he will send me to hosp for spec surgery and they will ahve the answers for that) any way back to hosp.. they actually sent me home after my accident with pain killers an ace bandage and crutches ,,completly ignoring my purple cold foot that had no pulse...as it turne out i had a blood clot. as well as bone bruising and a chiped bone in the ankle, we are on a manufacturing line when it comes to er services or hospitals...no human factor any more... but like i said i found a really caring dr in fact i have 3 and one office that are just reallly good. i wish you all the best and prey you can find a dr who will look out for you...good luck and god speed
[QUOTE=painman2009;4691711]wow. it is amazing how dr are affraid of us..thy dont know and all of a sudden think of their ins policy... sorry you had to go thru that ,,alot of us have seen the same im sure. with me the hosp just wanted me out said here are some pain killers let me give you a boost through a needle then sent me on my way..sorry just to break!!( my neurologist just called to check on me..you cant find drs like him, he admitts to not knowing near enough about my issue but he trys his best to make sure i get the best treatment .. im lucky with that) and he also answered me re calmare said that it is experimental really rght now with no reall time tested results and though it is promising he would prefferr iI stick with the tried and true first.. and when it is time he will send me to hosp for spec surgery and they will ahve the answers for that) any way back to hosp.. they actually sent me home after my accident with pain killers an ace bandage and crutches ,,completly ignoring my purple cold foot that had no pulse...as it turne out i had a blood clot. as well as bone bruising and a chiped bone in the ankle, we are on a manufacturing line when it comes to er services or hospitals...no human factor any more... but like i said i found a really caring dr in fact i have 3 and one office that are just reallly good. i wish you all the best and prey you can find a dr who will look out for you...good luck and god speed[/QUOTE]
called today..Calmare $125 per session at 10 sessions , CASH only lol I said,,what? no credit cards? I will find out more info because I asked the normal questions like...have you ever treated anyone with RSD? Did it help? Of course the answers were yes. I have doubts ..Read about the Hyperbaric Chamber helping stroke, autism, MS & rsd patients. Will try because of less invasive. Insurance wont cover that either. I will have to have my doct go peer to peer for that referal. Every day I get so mad. Im starting to make plans to start writing everyone. Isnt there a national list of how many RSD people are out there? I do feel better when I vent here. Thanks for listening to me. Im studied out today. Hope this gets back to painman
Love you all
[QUOTE=Shelbie;4691998]called today..Calmare $125 per session at 10 sessions , CASH only lol I said,,what? no credit cards? I will find out more info because I asked the normal questions like...have you ever treated anyone with RSD? Did it help? Of course the answers were yes. I have doubts ..Read about the Hyperbaric Chamber helping stroke, autism, MS & rsd patients. Will try because of less invasive. Insurance wont cover that either. I will have to have my doct go peer to peer for that referal. Every day I get so mad. Im starting to make plans to start writing everyone. Isnt there a national list of how many RSD people are out there? I do feel better when I vent here. Thanks for listening to me. Im studied out today. Hope this gets back to painman
Love you all[/QUOTE]
hey sorry usally on earlier but having really bad day..rsd just exploded on me completely consuming both legs.. a little scare with how fast that went and also having hard time standing on feet.. already fell once tdy.. drs tell me dont stand..4 kids to take care of how do i "not"stand as well as drive ..wich is real fun..apin is crazy and rapid temp changes are sanity testing also the swelling feels like its not going to stop...i have pt tonite ..thts going to be fun...sorry.. that is cheap when i called i was told 7,000 cash no ins for 4 vivts..thehyperbaric chamber sounds promising pleas let me know what they say im looking for what ever non narc and non invasive procedire i can find thank you...god speed and hopes for pain free days
yep, doc is out of the country right now & will call me back when he is in town. I talked to the girl answering the phone. She said she & another girl actually run the machine. I watched a video on how it works. Im going to talk to my primary care doc at Sharp to see if she can call & get info before I get taken. However...I am desperate now as it is in my feet now and my back has terrible spasms. Also under my right rib cage is weird muscle movement. Hope its not in my organs. Ketamine I think is my only hope





All times are GMT -7. The time now is 02:26 AM.





© 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!