it is a very hard situation- to see your love one go thru and theres really nothing we can do except be there but i know my husband is not the same guy i married either- he's sad- angery- hurting- and he wants to do things but rsd just brings him down and the pain is so strong- my life has changed as well, and brings me to tears seeing him this way and hearing of others going thru this nightmare called rsd.. but what we can do is be the strongest we can be its hard especially if you have little childern i do not and you taking on a lot more responabilyt is tiredsome and hard,, theres really no words to say to help fix anything just support and venting- and making new friends with the same and each other being there in times we need support.

Please!!!!!!!get a second or third opinion regarding implantation of SCS. Many CRPS patients desperately seeking relief have opted for SCS without exhausting all other avenues only to worsen and spread their CRPS. If your husband is one of the many who are permanently damaged by SCS, removing the devise will not reverse the spread of CRPS. Please do not be blinded by desperation and seduced by hope. Both of those feelings are at the top of the list for causing CRPS patients to undergo risky and regrettable procedures.

I am so glad that your husband was able to have a good day!! As you can probably see it is the pain that makes him the way he was acting, it does terrible things to them and sometimes they don't know how to channel all of that. It took my husband about 2 years, and even now on his really bad days, I know to just keep quiet,( well as quiet as we can, the kids are pretty good too, they seem to really understand, even at 4 and 6,)and give him space. As far as how my hubby is doing, I try not to think about it, but here we go. He has the CRPS on his entire right side, including internal, and he now has increased pain on the left side, so it will be full-body soon. The spread from his right hand to right leg took about 8 months, and he has been having pain in the left side for about 3 months now. He was fighting to keep his right wrist straight, even though he told me every day how hard it was, but on June 1 it bent and he can't straighten anymore. He has been walking with a cane for 3 months now. The way I know his level of pain is that he has not gone fishing in over 3 weeks. My hubby LOVES to fish, he would fish everyday last year, this season he has gone about 10 times. It makes me very sad, but I just keep hoping that something will click and he can be pain free.
I agree with ballerina, although I thought you meant a pain pump. No matter what any doctor says, do the research yourself. You are the best ally your husband has.

I'm so very sorry, that I've just picked up on this thread, and not sure I saw the original writer stop back in... (My fault).

But, the last thing any of us RSD's want (especially a husband) is pity. We need happiness to surround us, and don't let our pain to stop you!

Forget feeling sorry! Forget it!
You're feeling sorry for yourself! Not for him!
(Sorry for being so bold, but, truth is the only way to be).

So, pick up, and get on with YOUR life!
Did you depend on Him too much?
Maybe.

Get up, Get on, be Happy!

That's all I can tell ya!

I'm the husband with RSD.

Pete

ASB

I am very offended by your post, I do feel sorry that my husband has to deal with this pain everyday. It is horrible that he is stuck in bed all day and can not go out and fish like he loves, or even do any of the things he enjoyed. I don't give him pity, I support him as much as I possibly can and I try to make his day as happy as I can. Just because I feel sorry for him does not make me act any different towards him. I do EVERYTHING in the household, outside work, take care of a 4 and 6 year old, go to school full-time, and take care of him. I don't feel sorry for myself, I don't have time to!

i was going to write somthing but it was not going to be something nice to that post BRAVO to you jaded , its very rude and when he said we feel sorry for ourselves... I DONT THINK SO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! maybe thats the kind of people he has around him to make him bitter......................................

Hats off to you and all of the others that provide care, work both in an outside of the home and raise small children at the same time! We are talking leaping tall buildings with a single bounds!!!!!!!!!!!!!!!

Hi there. I think I understand what both you and Pet are saying, even if there hasn't been a meeting of the minds between you: so far.

What the spouse in pain needs more than anything is compassion and empathy. And what neither of you need is to wistfully hold on to the way things used to be or might of been.

It brings to mind something that I wind up posting every year or so, but one that bears repeating. It is drawn from Jack Kornfield's wonderful book, After the Ecstasy, the Laundry, and the experience of Ram Dass (f.k.a. Richard Alpert, PhD. of Harvard, before he got expelled way back when along with Tim Leary for spreading too much good cheer through the land). A good friend of mine was at the public talk Ram Dass gave in San Francisco where these words were delivered, at what I understand was one of the first public talks Ram Dass gave following his stroke. They appear online in a collection of Unitarian sermons, having been apparently redacted to avoid copyright issues:

Ram Dass, is an American spiritual teacher who suffered a catastrophic stroke in 1997. About a year later he said, "For years I practiced the path of service. I wrote books about learning to serve, about how to help others. Now it is reversed. I need people to help me get up and put me to bed. Others feed me and wash my bottom. . . . But this is just another stage. . . . If I think I'm the guy who can't play cello or drive or work in India, I would feel terribly sorry for myself. But I'm not him. . . . I have a new life in a disabled body. This is where I am. We've got to be here now. We've got to take the curriculum."

http://home.att.net/~usnh/20040502.html

It is hard to let go of the things we planned for all our lives, but take the curriculum we must. And in the case of the non-injured spouse, that means being open, first and foremost, to experiencing the pain of the other. To the extent he can tolerate it, put your arms around your husband and hold him close. The couples that do well at this are those who maintain their emotional union. You too will take strength from it.

Mike
(RSD spouse with a full-time working wife, a trial lawyer who comes home at night to a second career, making sure the trains run on time for our now teenage sons.)

I thank you for posting that Mike. It is very hard to let go of the things we used to be able to do. 99% of the time I can follow those words, to live in what we have now. But there are some days that I get overwhelmed, then I look at my husband, and I just keep pushing. I try to remember that today is just one bad day, and tomorrow for me will be ok. I think we both try to be strong for one another, and our kids. I know everyone tries the best they can every day, some days we succeed better than others.

It has been such a relief to me personally to be able to post on here, and to glean the thoughts and advice from others. I thank you all, and hope those in pain, and those close to them have a good day

I know that you all have been here fro a long time but i want to invite you all to my husbands site mypainlife.com but he started his site to help vent and to learn to be that better person. I know that I and many others are members of more then one site.
Just check it out and give him that feedback that all want.

He is getting grumpy again and yes i do pity him but that is no excuse for soem of the actions that he does. All I can do is pray for him at this point. Because I cant take him saying that everything that is wrong is my fault. I m human too,

I continue to pray for all you and keep up all in my prayers