hubby doesnt understand
 

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
 

Welcome to Neuro Talk. You found a site that will listen. I have RSD or PN too, so I do understand the pain. Your husband needs some education about this. This is nothing faked, or something anyone would want to have in their lives. Compassion sometimes only happens when one gets sick themselves. We all do at some point have a medical issue. If you can take your husband with you to the doctor and let the doctor explain this to him, perhaps that will open his heart a bit. We need support in this, from our mates, and our friends. I will keep you in my thoughts and prayers. ginnie

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
:hug:

severe rsd (complex regional pain syn)
 

It will continue to be an issue. My husband has seen what happens when I have an episode. The only thing I can suggest is that you may have more than just this. Have your Ivig's done. In the meantime, you should go to a therapist that specializes in Pain patients. Honestly, your pain is real and he is adding stress..........not good for you to keep it in.

have him read this

Please read my life with RSD/CRPS

These are the things that I would like you to understand about me before you judge me.

Please understand
that being sick doesn't mean I'm not still a human being
I don't feel well often times and I might not seem like great company, but I'm still
me stuck inside this body.
I still worry about my kids and work and my family and friends, and I'd like to hear you talk about yours too.
Sometimes I want to talk about my illness sometimes I don't, so please don't roll your eyes when I talk about my pain and please don't pressure me to "get it off my chest" when I just want to pretend it doesn't exist.


Please Understand
the difference between "happy" and "healthy".
When you've got the flu you probably feel miserable with it, but I've been sick for years.
I can't be miserable all the time, in fact I work hard at not being miserable.
So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired I may be in pain. I may be sicker than ever.
Please, don't say, "Oh, you're sounding better!" as if I'm healed. I am not sounding better, I am sounding happy. Tomorrow I may sound worse again.



Please understand
that being able to function for an hour doesn't necessarily mean that I can keep it up all day. Doing everyday things, that everyone else takes for granted, exhausts my resources and I need to recover.
Imagine an athlete after a race. They couldn't repeat that feat right away either.
With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing. Maybe today, I can handle work and home, tomorrow it may be one or the other but not both. There is actually a name for this it's called postactivity payback and it sucks.
So, please try to keep in mind that I don't function like everyone else and just because I can do it today doesn't mean I can do it everyday.



Please remember
that the above paragraph can apply to just about anything, "sitting up", "walking", "thinking", "being sociable", and so on it can apply to everything that requires physical or mental effort. That's what a chronic pain illness does to you.


Please understand
that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen.
Please don't attack me when I'm ill by saying, "But you did it before!".
If you want me to do something, ask if I can and I'll tell you.
In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.



Please understand
that "getting out and doing things" does not make me feel better, and
can often make me seriously worse.
Reflex Sympathetic Dystrophy may cause secondary depression (wouldn't you get depressed if you were always in pain and exhausted?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.



Please understand
that if I say I have to sit down/lie down take these pills now, that I do have to do it right now, it can't be put off or forgotten just because I'm doing something. RSD/CRPS does not forgive.



Please understand
that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well, But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better.
It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness. I will go about the business of living, but I won't necessarily be happy about it either so please try to understand that there is a reason I'm a little crabby sometimes. I can't just hide in bed with my head under the covers because I don't feel good everyday. But I sure have tried to do just that.



Please If
you want to, you can suggest a cure to me, but please don't act as if
it's going to be my salvation. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest something at one point or another. Typically, it's just the same old snake oil in a new package.
If there was something that cured, or even helped, people with RSD/CRPS then we'd already know about it.
There is worldwide networking (both on and off the Internet) between people with RSD/CRPS, if something worked we would KNOW.
I'm happy to hear what you have to offer and if it's something that I haven't heard before, I'll take what you said and discuss it with my doctor.

Please understand
that getting relief from an illness like this can be very slow if not imposable.
People with RSD/CRPS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.



Please understand
that if I pull away from a touch or a hug. Its does not mean that I am anti-social. Or that I don't like you. It simply means that my body's ability to enjoy touch has changed and I am unable to greet people in a normal mater because of the chronic burning pain that RSD/CRPS causes.


I depend on you - people who are not sick for many things. But most importantly, I need you to understand me.


THANK YOU!

Is this something you wrote personally? It seems familiar. If it's something from another website please link to avoid copyright issues.

No I found it on the internet somewhere. said to use freely so i have posted it on some forums where people have had this sort of problem and I have had my family read it.

hubby doesnt understand
 

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.