[Sharianne615]

I am a wife of a husband that has RSD, Im not really even sure where to start. My husband got hurt of the job September 24, 2010, he is/was a frieght handler for Fedex, The night he came home, I saw his ankle, and I knew right then and there something was really wrong, his manger did kno what happened but my husband is hard headed and didnt report it, and told his boss that he would be ok,

well after i saw him i told him that he needed to go to the hospital, so 4 hours later he decided he was goin to go, he came back home 3 hours later and said that he had a severe sprain, well i knew the it was more serious then that cuz i am a medical assistant, so he followed up with his orthopeadic dr and he put him in a boot and scheduled him for a MRI, so that was done and he went to the follow up with the MRI and his dr said WOW, you really did a number here, so then that dr refered him to another dr in the office that specialized more with ankles, so by the time he got to see that dr it had been a few months and just to remind u, my husband has been in his boot, so this new dr looked at his MRI and said that he has torn ligaments, tendons and achilles tendon,

so now he is put into therapy and given a corset brace, and he is told to start walking on it, his foot is still swollen and he can not bend his toes, move his foot left to right or up and down, so they started him on some meds, and made another follow up appt, so then after a couple follow ups, my husband keeps describing pain and well the dr said that the pain he is describing has nothing to do with his ankle, and the dr mentioned to me RSD and not to tell my husband cuz then it would be in his head and then he would "have" that, but as i read more and more, i started to relize that it is what he has, so then the dr finally diagnosed him with RSD.

He also refered him to a pain managment dr for the pain. This is not like the normal pain managment dr that has u come in ok heres ur meds on ur way, this dr actually trys to fix you and help you and doesnt want u to stay on meds. Ok well he started off with dialudid 4mg to get him under control with his pain and then dropped him to a 2mg, they also did spinal injections, which helped a little, then they did a spinal cord stimulator, which took a good amount of the pain away.

So now they have taken him off dialudid and put him on percocet 7.5 and my husband says that actually helps him. Now also within this time period, he has started to have these episodes i call them where he bobs his head up and down, stops breathing and then when it is done jus goes back to talking like it never happened, he has gotten worse with the episodes, and has gone to a neurologist, has done sleep studies, they did a video study on him EEG and cant figure out anything,, he is now on depacope i think its called which is for siezers, even tho the dr said he isnt having them but they are goin to treat him like he is. now these past couple of months, he has been sleeping alot and not wanting to do anything, does it get better????

[painman2009]

Hello my dear friend. I see the anguish you feel and the fear. this is a per person issue but we can share past issues we have had and maybe generalize and hopefully help you see the path he is on. The sleeping issue. well it could very well be the anti seizure meds he is on. I was on neuron tin and I could not stay awake to save my life. plus i swelled up sooo bad. finally they took me off it and kept me on percicept, amrix and naprelan. but replace the neuron tin with amitryptiline . I was no longer sleeping all the time. now I couldn't sleep until my body couldn't stay awake any longer and then i fell to for maybe 2-3 hours to then go sleepless again. then my shrink put me on LYRICA, another anti-convulsive and well i sleep at least 2-3 hrs a day because the combination knocks me out. now I may not always sleep 2-3 hours consecutive but still u take what you can get. but the lyrica Ive unfortunately noticed too late increases your appetite . so a hundred pounds later I noticed. that and no real cardio exercise also lead to high cholesterol, high blood pressure, and much larger cloths. mind you all these drugs to reduce the pain from a 10 to an 8. sometimes a little less. treatment for this beast is not a real science, it is the best possible guess work they have at the moment so for each treatment change i suggest you do a lot of research. weigh out pros and cons.(make sure you know all the cons(not all dr,s understand these) surgeries and further damage has been known to make RSD spread. and it does. I started with RSD in the lower right extremity. now it is below my waist. every thing. and has started in on my left arm plus my upper left part of my forehead.. the earlier the treatment the better the prognosis and response to treatment. and mind you this effects each person differently. also know that some dr,s give RSD stages while others disregard that entirely as symptoms aren't a check list on this. you can have all symptoms or only one and it is still RSD some people are at a level 10 pain all the time while others live i lower numbers(mind you no matter the level of pain it is still just as chronic and serious as every one else) RSD also hs effects on emotions, the mind, and is life altering to extremes. stress can make flares worse as well as aggregation temp changes humidity , vibrations, etc. do not panic as one of his main concerns is for you(I know this as I am always concerned that my wife is picking up my work load, or she feels useless to help etc. mind you . always be honest about your feelings as to do else wise can drive you nuts as well just don't panic(not easy) he is lost as are you this is a journey that must be taken 1 step at a time. and remember that this is a good place for you both its informative, its surreal, it helps keep things in perspective and a great place to release and find real support. I myself would have lost it if not of forums such as this, you will find great friends here and I'm sure it will help when you and or your husband can contribute to others. God speed and I hope this helps

[betsykk]

After three years,countless treatments and much thought, we brought our daughter to San Diego for twoweeks with Dr Sajben (www.painsandiego.com)
we are so happy with the results and thrilled with dr sajben and her commitment to rsd and chronic pain.
It is expensive but totally worth it.i only wish we had tried this sooner.

[nalakity]

These are some of the nicest and helpful words I have heard on RSD support. Painman2009, you are truly an inspiration. I just wanted to let you know that your kind words made me feel better too. Thanks

Originally Posted by painman2009

Hello my dear friend. I see the anguish you feel and the fear. this is a per person issue but we can share past issues we have had and maybe generalize and hopefully help you see the path he is on. The sleeping issue. well it could very well be the anti seizure meds he is on. I was on neuron tin and I could not stay awake to save my life. plus i swelled up sooo bad. finally they took me off it and kept me on percicept, amrix and naprelan. but replace the neuron tin with amitryptiline . I was no longer sleeping all the time. now I couldn't sleep until my body couldn't stay awake any longer and then i fell to for maybe 2-3 hours to then go sleepless again. then my shrink put me on LYRICA, another anti-convulsive and well i sleep at least 2-3 hrs a day because the combination knocks me out. now I may not always sleep 2-3 hours consecutive but still u take what you can get. but the lyrica Ive unfortunately noticed too late increases your appetite . so a hundred pounds later I noticed. that and no real cardio exercise also lead to high cholesterol, high blood pressure, and much larger cloths. mind you all these drugs to reduce the pain from a 10 to an 8. sometimes a little less. treatment for this beast is not a real science, it is the best possible guess work they have at the moment so for each treatment change i suggest you do a lot of research. weigh out pros and cons.(make sure you know all the cons(not all dr,s understand these) surgeries and further damage has been known to make RSD spread. and it does. I started with RSD in the lower right extremity. now it is below my waist. every thing. and has started in on my left arm plus my upper left part of my forehead.. the earlier the treatment the better the prognosis and response to treatment. and mind you this effects each person differently. also know that some dr,s give RSD stages while others disregard that entirely as symptoms aren't a check list on this. you can have all symptoms or only one and it is still RSD some people are at a level 10 pain all the time while others live i lower numbers(mind you no matter the level of pain it is still just as chronic and serious as every one else) RSD also hs effects on emotions, the mind, and is life altering to extremes. stress can make flares worse as well as aggregation temp changes humidity , vibrations, etc. do not panic as one of his main concerns is for you(I know this as I am always concerned that my wife is picking up my work load, or she feels useless to help etc. mind you . always be honest about your feelings as to do else wise can drive you nuts as well just don't panic(not easy) he is lost as are you this is a journey that must be taken 1 step at a time. and remember that this is a good place for you both its informative, its surreal, it helps keep things in perspective and a great place to release and find real support. I myself would have lost it if not of forums such as this, you will find great friends here and I'm sure it will help when you and or your husband can contribute to others. God speed and I hope this helps