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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Old 05-28-2011, 03:03 AM #11
daniella daniella is offline
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RSDjaded this is my opinion about families coping with our condition from my experience with my mom. My mom tries to protect me by not showing her emotions etc through my condition. I know though that she cries from all I got through and the impact it has on her life. I would rather her talk to me about it then me worry about her hiding things. I also think when you don't talk about things it builds up inside and it comes out in anger or makes one more depressed. I think it is also important to find somewhat happy things you both can do together. It can be hard but like when I was living near my mom we would play board game or watch a comedy show etc.
Have you looked into if you insurance covers therapy? Mine does not but some do. Also there are free support groups for rsd and chronic pain in general. My mom went to one.
Kathy I can really relate to you and feeling alone. I am also single and live now in a different state from the only support I have my mom. The rest of my family is not understanding. It is hard to meet people when one is so limited with the pain. I hope one day to be able to volunteer or work again so I can have more people in my life. For you too.
Hang in there all.
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Old 05-28-2011, 08:43 AM #12
RSDjaded RSDjaded is offline
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Hi again, My insurance does cover therapy, but right now don't have the money for gas to get there It is hard enough to get to his dr's appointments. It is also difficult for me to schedule time for that because I have so much already to do. Posting on here has been helpful, the past few days have not been so bad. I also expressed to my husband that I feel lonely and how I don't want to burden him with anything else. He tries as hard as he can, he will do things with us when he is able, even going to walmart is a fun trip for us, or using our last few dollars to take the kids out to dinner. My husband and I are very close, I love him so much. I try to do things before he even asks for them, so that he won't try to do it himself. He was mr. fixit, loved working with his hands and could fix anything. My mower hasn't been working and before he was hurt it would be fixed in 5 minutes, now I don't want him to even try to fix it, but he does. He will go out there for 10 minutes and tinker, but I hate to seem him in more pain. It is frustating for me, so I can only try to imagine how frustrating it is for him.
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Old 05-30-2011, 07:32 PM #13
kathy d kathy d is offline
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Dear RSDjaded,
It sounds like you are the best wife to your husband. It is sweet that you don't want to ask him to do things but he tries to do them and YOU know he is in more pain doing it. I can understand him wanting to fix the lawnmower because sometimes it makes us feel good to be able to do something we used to do. It gives us a sense of accomplishment. I know I have a list of things I need to do and yet it takes me months to do things so I can cross them off the list. It used to take me 5 minutes to do things before rsd. I used to fix things around my house, car, etc. and enjoyed doing so. And would drive to my family or friend's house to help them out too.

Good idea about health ins from Daniella (You go girl). I have a traveling counselor that comes to my house each week. Get in touch with your health ins to see if they will cover it. Try your nearest mental health facility and ask if they have a mobile therapist. At least if it is covered by ins you won't have to pay for the gas to get to them. Just a thought. I have been told by my counselor that she has alot of clients on state/federal assistance programs (I have no idea if you would qualify or what your situation is) but it may be something to look into. I know the patients do not have to pay copays or anything. I always say as long as you as all anybody can say is no and you will be no better off but it can't hurt to ask. Good luck to you and your family. You are an amazing wife and should be very proud of yourself.
Take care,
kathy d
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Old 05-30-2011, 11:13 PM #14
Dubious Dubious is offline
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Originally Posted by rsdwife99 View Post
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 have had RSD for more than 3 yrs now. Prior to that, my wife and I were both health care providers taking care of others, in more of an orthopedic capacity, for more than 20 years.

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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Old 05-31-2011, 03:03 PM #15
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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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Old 06-02-2011, 11:31 PM #16
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Unhappy 5 years of marriage and 9 months so far with RSD

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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Old 06-03-2011, 07:58 AM #17
daniella daniella is offline
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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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Old 06-03-2011, 02:14 PM #18
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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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Old 06-03-2011, 02:16 PM #19
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Originally Posted by daniella View Post
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.
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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Old 06-03-2011, 09:25 PM #20
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Default So happy you found this site!

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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