i' afraid my hubby will leave me, i try to say ty for everything i love him dearly but he doesnt understand the pain, he thinks i'm laying and sitting too much, says he wont let pain ruin his life, i know he loves me, but he's started rolling his eyes at me and clearly not happy with this, all i can do is cry for fear today, anyone else here wiyh this problem? i try not to be negative and cant go out and about like he does.

lolo217, I'm a husband of a wife whose had RSD for 10 years. If he's rolling his eyes it may be because he does not understand the severity of this disease. How long have you two been dealing with this? Has he looked really deep into this condition? If he would like to talk to a spouse of one who has RSD pm me. It really saddens me to hear of love ones who drift, that includes friends, spouses and blood relatives.

Hi lolo! I am so sorry that you are dealing with this and that your husband doesn't get it. Like most non-RSD sufferers, he probably just doesn't understand it. If you haven't already done it, I think it would be a good idea for you to provide him with some information about RSD. I would also show him the McGill Pain Index (google it) - it has helped some of my family members understand the severity of the pain a little better. As my husband says, it really puts the pain levels in perspective.

I have had RSD for about 21 years now. I have been married 13 years and am so much worse off with it now than when I got married. Luckily my husband is more understanding, but some family and friends were not. Educating them helps. It is easy for someone not suffering from RSD to say that they wouldn't let the pain ruin their lives, they obviously do not get it and they need to be educated!

I wish you the best of luck with this.
Nanc

ty nanc i appreciate your thoughts and ty for the info on the mcgill pain index, i was feeling pretty lowly that day, we have been together 12 yrs now and hes always been great, he says ill get better, well not from what im reading! hopefully he will come around and start reading up on it. where is your rsd?

ty nanc i appreciate your thoughts and ty for the info on the mcgill pain index, i was feeling pretty lowly that day, we have been together 12 yrs now and hes always been great, he says ill get better, well not from what im reading! hopefully he will come around and start reading up on it. where is your rsd?

Hi lolo, I completely understand where you are coming from, I have many days like that too. The great thing is that you can find so much support and understanding here when you can't find it at home.

I have RSD in the right side of my face, both hands, left arm, left leg and right foot. It is possibly spreading to my other foot and internally, dr still unsure about it.

I think, since your husband has been pretty great, maybe some additinal education about RSD would help him. If you are treated early enough, and treated effectively, your chance of remission is greater. Can't remember if you said how long you've had it. I was in remission for a long time but the injury that brought it back was diagnosed way too late for treatments to help me.

Any time you need to vent or talk, pm me.

Take care!
Nanc

hello jimking ! ty for responding, i appreciate it alot. i was diagnosed about a month now, i still have the broken wrist too, guarding it like crazy, as there is no cast, bones didnt heal together, so surgery cant come soon enough. i will show him your letter, maybe he will get it, it hurts my heart that he sits on his pc and does not even look it up, hopefully he'll come around? i dont know what or whered i be without him. again ty and say a warm hello to the mrs from me, you're a wonderful husband jimking, where is her rsd, how did it happen? id pm you but havent figured it all yet? ty again very much, kind words go a long way

She broke her right wrist back in 2002 from a trip and fall. We were out of state at the time visiting family when it happened. She had her wrist temporarily set until we came home for her doctor to look at and treat. It turned out the set was not correct so she had the rebroke and reset.
To make a long story short my wife did not tell me about her RSD for two years although I knew something wasn't right. She's a private person so I didn't ask questions until she told me. Her fear was that I'd leave her because of it. I will say at the beginning I buried my head in the sand, not at all happy in what I was reading about RSD. Then she could no longer deal with uncaring doctors and work. She worked an additional 4 years before she called it quits. From there she really needed my help.

One month is not alot of time to learn to deal with this condition. However, It is in the early stage of this disease when you really want to aggressively treat this! My wife did not have that opportunity because she was misdiagnosed for two years. I strongly urge the both of you to manage stress very carefully because I have a strong belief that stress can cause as much pain in the long run than the broken bone itself. Your husband will have to learn not to transfer his stress onto you, and that is not easy because it took sometime for me to realize that I was putting stress onto my wife and not knowing it. Anyway I can ramble on and on but am currently at work. Don't hesitate to PM me.

ugh
wow! this sounds all too familiar omg, we lived in mn decided we couldnt take the long winters, got rid of our beautiful house, bought a 5th wheel and headed south, i regret only that i had a great dr. and tripping in my flipflops. so right now were stuck in missoui, i call it misery state. does yor wife still suffer with this and if i may ask what she does to deal with it? what state are you in? i cant believe they didnt diagnose it right away! im thinking of contacing a rsd attorney. goodnight for now. ty.

lolo217, it is quite common for RSD to be misdiagnosed or doctors knowing what it is and dismissing the patient without ever mentioning it to them. It's a can of worms many lazy doctors do not want to deal with. My wife's journey with doctors is long. Treatment at some of the best hospitals netted nothing. Even a world renowned facility turned into a nightmare. She is now on SSDI and medicare.

Most doctors seem not except medicare and those that do seem to be the bottom of the barrel. She has often been treated as a drug seeker. I've seen it first hand because I go to all her appointments as her advocate. Overall her treatment in the US dealing with RSD, from 1-10 I'd give her treatment a 5. She no longer visits doctors, she is no longer taking narcotics because she is tired of being humiliated, but that is her way of dealing with a bad situation, not everyone would do this and shouldn't. My wife does not hold doctors up on a pedistal and never did, even before her RSD. She's very shy and feels great guilt because of what it has done to her and others around her. So, she has little tolerance of doctors who roll their eyes at her.

She is in pain daily without fail, but she says the narcotics did nothing for her pain so who needs them. She moves around, cooks, garden, cleans the house if she can, it may take a month but she manages while I'm working. But I will say in her early days of RSD those pain meds were very important, no doubt about it. The pain in those days was driving her crazy and I'm not kidding one bit. Over time she seems to be able to control and or tolerate the pain better by lowering her stress level, diet and moving about as much as she can and avoiding situations that can trigger flares. Her energy level is low, she can only walk about a block or two and that is about it. She is not overweight, she looks much younger than her 54 years, and sweats constantly. Heat hurts her, the weather hurts her, coffee she loves!

We live in Virginia just outside of Washington DC. I hope everything works out for the better lolo217, don't let RSD control you, control it.