Husband has RSD....Any spouse out there feel sad?
 

Hi there,
My husband has had RSD for nearly 7 years ....we live in Iowa. I am just wondering if there is any spouse out there that feels lonely ever or just feels like 'there is no one like me'....without going into gory details I woudl first just like to know if there is anyone out there that feels like me.

I am sorry for your husband and the impact it has on you. I am not married but the closest person to me my mom is impacted so much by this. Have you thought of going to couples therapy? Do you have support for yourself? I think that is very key and also to try to do things you enjoy. You can email me if you want too. I have RSD but can listen.

I have RSD also but I understand your concerns... Iam and have always been on high alert for my illnesses' impact on my husband and children. It is awful and it has to be a daily concern... fully remembering that as our lives have changed, so has theirs...none of it is in my control and again, neither is it in their control... It is a sad story all the way around. How it impacts my husband .. Is different in how it impacts our children... My best thought is..try to counter balance this terrible bitter RSD pill with good...that is first realizing this is happening to each of us... you, and your family as a whole and finally..try not to let RSD take total control of your lives...keep the "mix" happy and wholesome..RSD does not deserve such important recognition!!!!

Hugs, Kathy

HI RSD wife

I have RSD and am bedridden with it. My husband stays home full time to care for me. He doesnt post here, but there are a few spouse that do.
I know what a struggle it is or a labor of love as my hubby says , to care for me. I know you husband appreciates all the extra work that is put on your shoulders and how much ou miss what your relationship use to be like. at least thats how we feel. we cant even be intimate at all and havent been since i got sick 6 years ago. so now we try to find other ways to have fun together, even a trip to walmart is having fun. ihave become more debilitated over the last few months, i cant even make it to church. he always trys to cook really yummy dinners and finds jokes to tell me and things to make m smile. Life is hard but he trys to make it better for me. I am sure your hubby values you and depends on you. Try to say encouraged and know that this has just unfortunately happend to him and its nothing he ever would wish to happen to himself or you. its just a part of life that has happened to us and we have to make the best of it.

Hi,
 

I lost my husband over 4 years ago. He became disabled before I did and I became disabled in 87. It wasn't just from the RSD though. I did ok until I got the RSD in 98 and then I went down hill. He took care of me more then I could him. I remember him saying he did ask my Dr. why they couldn't do something to help me. That probably teed off our Dr. for a day due to him working his *** off for both of us to keep us going. LOL

My husband was very good to me and my bank lady just told me last week that Bill and I were made for each other and I have heard that more times then I can count. We did have a connection that most people don't have but as I got more sick, I think it got harder on him to help me. He was amazing though, he was going and going up until the morning he had his anurism. Can't spell that. He went hunting the week before he passed away and we knew he wasn't going to make it for about 6 months. I didn't have that kind of energy or strength that he had.

They do get frustrated though. We both went to councelling seperately. I wanted him to be able to talk freely to a counceller. I would have not been good in couples councelling I'm sure. You have to be able to understand their feelings completely and be ok with them to do the couples thing through.

It's a lifelong illness that the whole family sees and lives with.

Ada

I know this probably isn't my place since marriage is different and I'm new here, so disregard this if I'm out of place in this thread. I have a really amazing girlfriend who I care about deeply and I know she feels the same, we've only been dating for 6 months but we've dated before in HS (we're both 20 I'm 3 yrs outta HS she's 2) and have known each other for a long time. She does so much for me, and I do anything I can to put a smile on her face and make her happy.. But I've been pretty useless for the last 90-100 days and have finally been diagnosed with this RSD stuff and they say it'll be at least a good month plus of treatment and PT if I'm lucky.. I'm always in pain and I feel like such a drag and I know she does her best to take care of me she really does but I feel like at her age she shouldn't have to worry about this at this stage of her life. Idk what I'm trying to say really just confused.

I think I know how you feel...
 

Hi RSDwife99,

I was searching on google to try and find someone else who felt like this. My husband has had RSD/CRPS for 3 years. It started in his right hand after a crush injury, then spread up his entire arm down to his right leg. His entire right side is affected and he is starting to feel it in his left side. He is in so much pain all the time, I try to do all I can to help him, and I understand that it is really hard for him, but no one is there to help me. I don't feel like I can talk to my family, they just don't understand everyday, all day dealing with this, and it is not his fault, I know that he is truly in pain and doing the best he can, but it is hard for other people to get that. I have two young daughters and I am attending college, went after he got hurt. Well I have rambled on enough, hope to hear back from you.

Rsdjaded rsd wife has not posted back in 2 months but I wanted to welcome you to the boards. There are others who have a loved one with rsd that post.
I am sorry about your husband. I know the impact too this has on you as a wife. Have you looked into group therapy for rsd or pain? Or therapy just by yourself? I think for both the suffer and the loved one it can help. It is hard for the outside person to understand this condition. Some will be supportive and some no matter how much education will never get it.
Is your husband in pain treatment? Very key. Also it is good that you are attending college. I think it is important for the loved one to have some things that they enjoy. It makes dealing with the rsd easier.

Thanks for replying. My husband is in pain management, so far nothing is helping very well. I have read everything I can about CRPS/RSD, and I continue to read everyday about it. I try to read about others with it, so that maybe something that has worked for them will help him. Throughout all my readings I was not able to find any other wives. I would like to go to therapy to talk about it, however with our financial situation, and with kids, it is just not feasable. I feel so helpless sometimes, but i don't want to talk about it with him because I don't want him to have to worry about something else, he has enough. It is nice to be able to vent on here, good luck to those dealing with the pain, hope you have a moment of relief.

Dear RSDjaded and All,
I am so touched by all your postings. As Lorigood243 posted "it is or a labor of love as my hubby says , to care for me." I nearly lost it on that one! It brought tears to my eyes for sure. I was thinking when you said due to your financial situation you cannot afford counseling...I was thinking if there is a Catholic Church in your area they sometimes have free (or a sliding fee scale) couselors. It is called Catholic Social Services. Some churches have them so call your nearest church rectory for info on where there is one in your area. I know they are nationwide. Also, contact any church in your area as they may have or have knowledge of others in the area such as a pastor of a church or support groups in the area. It is soooo important to get your emotional feelings out...even crying is very important as you are releasing negative feelings.

I was married for 9 years but have been single for the last 15 years or so (who's counting). I've been single with rsd so I have never had anyone to care for me. It is very lonely but I have a very strong son who is an amazing young man. He has endured alot (and lost a mom who was athletic and did everything with him) but has learned we all have to go through things and it is just how you deal with it that determines if you make it. After six years my family just doesn't get it at all and I am tired of continually trying to educate them. Today, my sister even said "Oh Monday is a holiday and your home health aid will be off." I just laughed because when you are disabled you NEVER have a day off. Each day blurs into the next one. But people that have not had any chronic condition just do not get it or they do get it but want to stay in denial over it all.

Please do not give up looking for a counselor. It is really important and for your kids too. I have learned as a mom that I have to take care of myself in order to take care of my son and others. Try to do things with your husband that he can do such as sitting in the park while the kids run around playing or watching a sunset. These things are free and will really keep you all together. It is the little things that get you through the day. I try to laugh each day and I pray alot. It gets me though it all. And I have a cat and dog that keep me laughing. They are my little angels here on earth. I hope we can help you here. We are here for anyone with rsd or chronic pain. Please do not hesitate to vent or ask for any help here. THis is the best group of friends you will ever want!!
Best of luck,
kathy d