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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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05-30-2011, 11:13 PM | #1 | ||
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There are those marraiges that grow closer with challenges and stressors and those that drift apart. Who could say that RSD is not just that? The ultimate of lifetime distractions. We had it all going for us prior to my injury. It is now all gone. My business, our income, my dreams of an active participation, growing and enjoying time with my wife and daughter...at least as I had planned it prospectively. As much of a loss to all my accomplishments and dreams as it was for me, I am sure it was worse for my wife having to deal with the loss but not afflicted by the pain that delivered it; a confusing and empty dilema for her to be sure. In spite of it all, we have worked through the hardships and have amazingly and with much work grown closer and stronger as such. CRPS has shown us a part of life that was once taken for granted but now cherished. Any moments that we can share, as a family, that are joyfull and precious are now revered. Everyday is a challenge now, but with every challenge comes a potential gem of delight that was once not realized. Nothing is taken for granted. I hope that you an your husband can find the same! |
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"Thanks for this!" says: |
05-31-2011, 03:03 PM | #2 | ||
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Thanks Kathy, I am going to look into a therapist that can visit my home.
Dear Dubious, I agree, I believe that we have become a closer family because of the crps. My husband was working at a great job, making enough for us to live anywhere and get anything we wanted, now we struggle everyday to pay bills for the neccesities of life. I know that is a big concern for him, he feels like he can't provide for us. I try to show him everyday how much we still need him and how much I love just being around him, and our daughters go into his bedroom all day to tell him things and just to say I love you. I just hate that he is in so much pain and there is nothing I can do. Right now he is going on a few hours sleep everyday and having extreme pain in his right leg. I wish they would figure out something that could provide relief for all those suffering. Thanks again for all of your thoughts, hoping you have a good day. |
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"Thanks for this!" says: | Dubious (06-01-2011) |
06-02-2011, 11:31 PM | #3 | ||
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Hello I m new here and i am looking a support group that can understand what it is like to live with someone that have RSD! My husband was injured at work and the outcome was RSD. And oh my our lives have been turned upside down. He had his first surgery on Tuesday and it was neurostimlulation. And I really think he is in more pain now then he was before.
I am having a hard time learning to coop with all this. Because this is not the man i married. This man that lives in the same house as me is totally different. We have been married 5 years comes August. My husband is an amazing man smart fun and outgoing but this RSD he is grumpy never happy and no matter what I do I cant make him happy. How does one help the man they love and coop with all pain they are in? Please someone help me! |
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"Thanks for this!" says: | allentgamer (08-11-2011), nevadabound (06-08-2011) |
06-03-2011, 07:58 AM | #4 | ||
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Magnate
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KB welcome and I am sorry about your husband. I am sorry your husband is having such a hard time and taking it out on you. Is he under pain doctor treatment? Has he thought of seeing someone to help him cope mentally?
I think it is so important for both side of this to talk about how they feel. Keeping things inside is not helping anyone. You can tell your husband how you feel you can't make him happy. Ask him what could help him? I think for you as a loved one it is important for you to still enjoy life. I know this is hard but going out with a friend to dinner etc can really help you take a break so to speak and regroup. There are support groups for families and people who have rsd or other chronic conditions you may want to look into. |
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06-03-2011, 02:14 PM | #5 | ||
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Thank you for the reply. I have tried to look for groups on-line but i guess maybe I am looking i the wrong areas or something. I find ones that are for the person RSD but not for the loved ones.
I have tried to talk to him about it and most of the time it is like talking to a wall. i understand that he is in a lot of pain and he is under the care of a pain management dr. but nothing seems to help. This monday is the day that the trial period for the neurostilulation is over and the lead comes out. But that just means more pain just in a different area of the body. I feel so lost in his life. and going out with friends is not really something that I can do. no one to watch our little man and no one to be here for my husband while I am gone. |
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06-03-2011, 02:16 PM | #6 | ||
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I have tried to talk to him about it and most of the time it is like talking to a wall. i understand that he is in a lot of pain and he is under the care of a pain management dr. but nothing seems to help. This monday is the day that the trial period for the neurostilulation is over and the lead comes out. But that just means more pain just in a different area of the body. I feel so lost in his life. and going out with friends is not really something that I can do. no one to watch our little man and no one to be here for my husband while I am gone. |
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06-03-2011, 09:25 PM | #7 | ||
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Don't give up. Speaking as a person with RSD. We feel so helpless, and hurt that we have this disease and that we have put this burden on you. It is not what you are doing or what you are not doing... it is the pain talking. There are days when I just say please dont be around me because I am snappy and hurting so bad I cant handle it and dont want to be mean to anyone. It takes alot more out of a man to not be able to take care of his family. I will type more later, but dont feel like it is you. That is the number one point of advice I have for you. Learn to forgive yourself, and come back and talk here. Eveyrone here is so warm and understanding. There are many people who are the spouses, mothers, of the person with RSD. Any topic and question you have or feeling you have... trust me... we are going through it right along side you or have been through it over and over, and can help you get along with what has helped us. The most important thing is to never give up either... my family never gives up on me, and learn to forgive even if he is being mean I know what its like being the mean person and it breaks my heart becuase its like something comes out in me that is so frustrated and I take it out on the people around me. Just forgive take a deep breath, and this is the BEST place online for you to get support. Honestly. I am 21 and have had RSD for 3 1/2 years and have been through lots of emotions ups and downs, and continue to go through it. Just hang in there, and feel free to message me if you ever need an ear or anything. THere have been so many times that I have gotten a message from somebody on days when I felt hopeless, and I felt so not alone anymore. Hang in there and know love and prayers are being sent your way. Welcome to the fam
Hannah ps: one thing to think about is him getting on cymbalta. It is a miracle pill that helps me and all my friends with RSD manage mentally with the pain. If I didnt take it, oi.... lets just say I take it happily. Look into that.. it supposedly helps with pain, and works with the receptors that fight pain, and is an antidepressant, because lets get real... this is DEPRESSING!!! And even if it doesnt help with the pain it helps with our mood managing the pain and relationships around us. All my friends who have RSD take this, and we couldnt imagine not. oh and 60mg of it! |
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06-04-2011, 01:32 AM | #8 | ||
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Magnate
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KB through the over 4 years I have had this condition my emotions and coping have went in every direction. I had periods where I would take my frustrations out on my support. Also my moods and behavior was everywhere. Can your husband see a therapist for the mental aspects of this? Being on meds for the mental side and having someone to talk to can really help in terms of coping with this condition.
Does your husband need care all the time? I just ask cause you said that no one would be there for him. It is one thing if he is unable but if he is able to do on his own I think it is important for him to. It is ok for him to need help and ask for it but things he can do on his own for his mental and physical well being he should. Is there anyone you can ask to watch your child even for a few hours? It really sounds like you need some you time. When I was talking about groups I meant in person ones. I know they are hard to find for families. You are more then welcome to post on here and if you want an email buddy I am here too. There are other family members who post on here and actually it helps me as a suffer. I see how it impacts our loved ones and I try to respond to the loved ones in my life in a better way. |
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"Thanks for this!" says: | dd in pain (08-10-2011) |
06-05-2011, 01:28 AM | #9 | ||
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Junior Member
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Hannah- Thank you so much. And i hate to say this but my husband is one them. Or I guess i should say that he is suppose to be taking them. when I bring it up to him it is a huge fight and I hate fighting with him.
He goes back to the Dr on Monday so I am really hoping that we will get some good news. He is is having the leads removed from his back. I m not sure if the Neurostimlulation is the answer for him. I see him in more pain now then I did before! I really do feel so lost in this world of RSD. I feel so sorry for the people that are dealing with this and has been dealing with it for years 9 months for me and all I can do is complain. I guess i need to work on being a better wife. I don't know what the heck I should do |
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"Thanks for this!" says: | dd in pain (08-10-2011) |
06-08-2011, 11:10 PM | #10 | |||
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