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  • Introducing myself.. I am a spouse of someone with rsds/crps..

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    Old 09-23-2004, 09:58 AM   #1
    goddessdana
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    Introducing myself.. I am a spouse of someone with rsds/crps..

    Hi everyone. I just wanted to introduce myself to you. I am a wife of someone with this horrible horrible hellish disease. He also has ankylosing spondylitis and a lot of Spinal cord damage. I'll mention someday. He also has extreme swelling around his heart and lungs (no water there they already did ultrasound) He get's horrible skin reactions. He get's rashes, welts where it looks like I have clawed the crap out of him!!! He get's these blisters on his hands, skin ulcers, on his tail bone it looks like one of our cats scratched him. Yeah he gets the hard muscles, he's touch sensitive, his skin turns red then blue. I am a huge advocate in his life. I have to know everything going on with his treatments. It's a shame that people don't know more about this hellish disease. Thats the only way I can describe it. When he hurts i can't stand it cause all I want to do is take his pain away!!! I myself have fibromyalgia and chronic fatigue syndrome. But I do everything I can to help him. He is going to have to go in a wheelchair fulltime soon. I am hoping to keep him out as long as I can. But it's getting very hard on him.

     
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    Old 09-23-2004, 06:37 PM   #2
    sharon1030
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    Smile Re: Introducing myself.. I am a spouse of someone with rsds/crps..

    Hi and welcome to our little family. Everyone is very friendly here so feel free to post whatever concerns you at the moment. I'm sorry your husband has RSD along with some other problems. It sounds like you are very supportive which is great. My experience has been that the support of my family has taken me far. Without them, I don't know where I'd be. I've had RSD since I was 15...18 years. I know it's a tough road. In my opinion, it's tougher on you because you have to watch the suffering and there's nothing you can do about it. I find it very hard when someone in my family is sick and I can't do something to help them...harder that when I'm the one suffering.

    What is your husband doing for the pain? P.T., meds, blocks? How long has he had it? I have a morphine/bupivicaine pump that helps me a bunch.

    I hope you stick around. This is a great place for support and you need it as much as, if not more than your husband.

    Sharon

     
    Old 09-23-2004, 07:40 PM   #3
    RSDtrinity
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    Re: Introducing myself.. I am a spouse of someone with rsds/crps..

    My brother has ank, and has found out that it is an auto immune problem. I've been trying to research RSD and find out if it is also an auto immune, because i'm pretty sure it is, just can't find anyone out there to do the study. I wish that RSD had been talked about before I had my minor surgery because if I had known it was a complication I would have never opted for the surgery in the first place. I've had RSD now 4 years, and I have horrible guilt towards my B/F because of all of the things I cannot do. I was incredibly active before the RSD and now most of my days are spent in bed. I feel guilty dragging him thru all of this, but understand that he's sticking with me because he loves me, RSD and all. As a sufferer, that is the one most important thing in my life, people still love me RSD and all. Make sure your husband knows that if he dosen't already and you'll be doing everything you can to help him not hurt. Seeing you have FM, you probably already understand more than my B/F what life is like with chronic pain, so you are one step ahead. And always keep us in mind if you need to ask a question or even vent. It sure does help me a lot. - Jessica

     
    Old 09-24-2004, 06:52 AM   #4
    goddessdana
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    Talking Re: Introducing myself.. I am a spouse of someone with rsds/crps..

    Quote:
    Originally Posted by sharon1030
    Hi and welcome to our little family. Everyone is very friendly here so feel free to post whatever concerns you at the moment. I'm sorry your husband has RSD along with some other problems. It sounds like you are very supportive which is great. My experience has been that the support of my family has taken me far. Without them, I don't know where I'd be. I've had RSD since I was 15...18 years. I know it's a tough road. In my opinion, it's tougher on you because you have to watch the suffering and there's nothing you can do about it. I find it very hard when someone in my family is sick and I can't do something to help them...harder that when I'm the one suffering.

    What is your husband doing for the pain? P.T., meds, blocks? How long has he had it? I have a morphine/bupivicaine pump that helps me a bunch.

    I hope you stick around. This is a great place for support and you need it as much as, if not more than your husband.

    Sharon
    LOL No I'm not going anywhere you guys are stuck with me LOL. I may change my name in here though lol. To maybe fibrodana. But anyways he was diagnosed with rsds in 2001. Thats a long story in itself damn doctor actually gave him rsds. he literally woke up with it the next day. The soc sec dopc examining him told him to reach down and touch his toes , Dale locked up at his knees the dumb *** literally pushed him and forced him to touch his toes!!!! This QUACK never even took an xray!!!!! Anyways shortly after that when I got him in to my doctor was when he was diagnosed with rsds. Prior to that he just reinjured his back in a car accident in a blizzard in the poconos mountains. (where I got my fibro) I thinmk..... as far as treatments they have tried PT but he has so much inflammation around his heart and lunghs that he just can't do it till we get that under control. They have tried, Oxycontin, dilaudid, now morphine patches 100 mcg. every 2 days. also on Xanaflex, naprosyn, prednisone, effexor, zantac, valium, I may be amissing a couple oh yeah and a 15 mg ir morphine pill 15 mg. We are trying to avoid the pump that sends shocks to the nerves. Would like to see him get on some kind of pump but thats last resort. It's bad enough he's on prednisone long term. But hey we are always open to suggestions. Yeah poor dale has been through a lot in the last few years. I give him lots of love and support even go as far as educating the general public about him. I even run a chronic pain support group. Well... trying to. Yeah i don't know if it's tougher on me cause i have to watch him suffer i think it's rough on the both of us equally. But we are always there for each other and give each other support on those really bad days. yeah sometime we even need our space. but we give it to each other respectively. Thanks and yeah ya'll are stuck with me now I have been posting in a few other boards like Chronic fatigues, fibromyalgia (the two horrors I have) and in this board and chronic pain and spinal cord boards. Yes the people in here has been very very kind to me. And to be honest I needed a board like this so I can't get things off m,y mind and maybe hopefully in long run hjelp others. Thanks again!!!!

     
    Old 09-24-2004, 07:05 AM   #5
    goddessdana
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    Talking Re: Introducing myself.. I am a spouse of someone with rsds/crps..

    Quote:
    Originally Posted by RSDtrinity
    My brother has ank, and has found out that it is an auto immune problem. I've been trying to research RSD and find out if it is also an auto immune, because i'm pretty sure it is, just can't find anyone out there to do the study. I wish that RSD had been talked about before I had my minor surgery because if I had known it was a complication I would have never opted for the surgery in the first place. I've had RSD now 4 years, and I have horrible guilt towards my B/F because of all of the things I cannot do. I was incredibly active before the RSD and now most of my days are spent in bed. I feel guilty dragging him thru all of this, but understand that he's sticking with me because he loves me, RSD and all. As a sufferer, that is the one most important thing in my life, people still love me RSD and all. Make sure your husband knows that if he dosen't already and you'll be doing everything you can to help him not hurt. Seeing you have FM, you probably already understand more than my B/F what life is like with chronic pain, so you are one step ahead. And always keep us in mind if you need to ask a question or even vent. It sure does help me a lot. - Jessica
    Well I have a wonderful book called Autoimmune disorders and what youre doc won't tell you. Can get it at hastings bookstore if you have one nearby. It's a very good book and yes as and rsds and crps amongst many many other diseases are in fact autoimmune disorders. Not aids but immune deficincy. anyways A.S. is a diagnosed by a gene in your body. And we both understand about not being able to do the things we used to be able to do. Yes we have re-arranged our lives around our diseases. putting our health above everything else. one thing different between you and us is that we have lost a lot of friends over this because they don't understand we can't schedule a day at the lake or a bar b que we never know how we'll feel that day. every little thing take a lot out of us. But we do understand about not being able to do the things we once loved to do. Like hubby loved working on cars he can't do it anymore but i found him something better. He now builds model cars and trucks and semi trucks.... keeps him busy anyways. and his mind off the pain. Oh hubby klnows i love him and ain't going anywhere. He was scared for the longest time that one day i would get to where i can't handle it and leave, but, i married him for better or for worse in sickness and in health. I'm not gonna go no where.
    Nice meeting the both of you that posted in here so far

     
    Old 09-24-2004, 08:09 PM   #6
    RSDtrinity
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    Re: Introducing myself.. I am a spouse of someone with rsds/crps..

    Glad to hear you are here to stay, and it is a great place to vent. Any time you need, go ahead, we all understand. - Jessica

     
    Old 09-30-2004, 10:28 PM   #7
    KateInAustralia
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    Re: Introducing myself.. I am a spouse of someone with rsds/crps..

    Hi Dana,

    I've talked to you on another board, welcome to this one!

    I'm sure you'll get lots of answers to your questions, and we'll be asking you some too along the way!

    We all agree that the dr's don't tell us enough about RSD, that's why these boards are so important, we can bounce ideas and questions off real people -friends - who deal with the same things as us, day in, day out. And we're all here to help and support each other!

    x Kate

     
    Old 10-01-2004, 07:08 AM   #8
    goddessdana
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    Re: Introducing myself.. I am a spouse of someone with rsds/crps..

    Quote:
    Originally Posted by KateInAustralia
    Hi Dana,

    I've talked to you on another board, welcome to this one!

    I'm sure you'll get lots of answers to your questions, and we'll be asking you some too along the way!

    We all agree that the dr's don't tell us enough about RSD, that's why these boards are so important, we can bounce ideas and questions off real people -friends - who deal with the same things as us, day in, day out. And we're all here to help and support each other!

    x Kate
    Ahhhhh and what a miracualous site this is too!!! I think this site may have quite possibly saved my sanity. LOL Yes The people here are very kind to me and you guiys are all sweet little angels.

     
    Old 10-03-2004, 07:35 PM   #9
    dianadiana3
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    Re: Introducing myself.. I am a spouse of someone with rsds/crps..

    I have learned so much from the information here. Thank you Thank you.
    In sickness and in Health I beleive you have the strength to endure.

    I have been dating a Widower - his wife of 30 years when we first started dating after the accident--Know one knew what I ahd and I just pushed on... 2 surgical procedures
    and alot of LOW days --
    Anyway we talked about marriage and I we figured around the 2 yr mark we would know-
    WOW- in April he let me know that he doesn't want to marry me (LOVES ME )does not want to take care of another sick (wife ) women>
    TALK ABOUT THE BEING PUNCHED IN THE STOMAC!
    SINCE WE LIVE TOGETHER I AM NOW LOOKING FOR A PLACE OF MY OWN.I AM AFRAID TO GET SICK INFRONT OF HIM-
    LETTING HIM KNOW I AM TIRED
    ETC.ETC...............I figured before he asks me to leave when I am in a wheel chair- better i should go on my own 2 feet.

    HELP ANY OPINIONS
    SUGGESTIONS
    GLADLY WELCOME INPUT.
    DIANA

     
    Old 10-03-2004, 09:08 PM   #10
    AngeInBoston
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    Re: Introducing myself.. I am a spouse of someone with rsds/crps..

    dianadiana3 I have learned so much from the information here. Thank you Thank you.
    In sickness and in Health I beleive you have the strength to endure.

    I have been dating a Widower - his wife of 30 years when we first started dating after the accident--Know one knew what I ahd and I just pushed on... 2 surgical procedures
    and alot of LOW days --
    Anyway we talked about marriage and I we figured around the 2 yr mark we would know-
    WOW- in April he let me know that he doesn't want to marry me (LOVES ME )does not want to take care of another sick (wife ) women>
    TALK ABOUT THE BEING PUNCHED IN THE STOMAC!
    SINCE WE LIVE TOGETHER I AM NOW LOOKING FOR A PLACE OF MY OWN.I AM AFRAID TO GET SICK INFRONT OF HIM-
    LETTING HIM KNOW I AM TIRED
    ETC.ETC...............I figured before he asks me to leave when I am in a wheel chair- better i should go on my own 2 feet.

    HELP ANY OPINIONS
    SUGGESTIONS
    GLADLY WELCOME INPUT.
    DIANA
    10-01-2004 02:08 PM

    !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!

    First of all, welcome to GoddessDana, I'm sorry for all the extreme pain both you and your husband have to suffer! Thank you for your reply to my other thread, it's taken a while for me to get back here! You helped me to see that I've been exceedingly hard on my husband lately for going overboard on his meds, and that I should be more supportive and understanding....it's something I'll have to work on!

    Second, to DianaDiana above, I'm sorry about your impending breakup with your boyfriend! But he told you in April? I think you are punishing yourself more every day you are there....he laid out his views, and if he's not interested in staying with you for the long term, sick or not....well, any woman who stays with a man who says THAT is just laying herself down as a doormat! I hate to sound harsh, but I worry that your self esteem must be pretty low, and I know you're scared of being alone without someone there to help you when you're in so much pain with this terrible disease, but you really must! I hope you find a place of your own soon, so you can truly make the break and go through the process of grieving that relationship and healing, and eventually you will be ready to move on to a newer and even MORE loving relationship! Then count yourself lucky for getting away from him, he needs some help himself. He'll probably play the swinging bachelor for a while and then be helplessly lonely because every woman has the potential to get sick...sounds like he's commitment phobic now.

    Good luck,
    ~Ange~

     
    Old 10-04-2004, 10:32 AM   #11
    goddessdana
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    Re: Introducing myself.. I am a spouse of someone with rsds/crps..

    Quote:
    Originally Posted by dianadiana3
    I have learned so much from the information here. Thank you Thank you.
    In sickness and in Health I beleive you have the strength to endure.

    I have been dating a Widower - his wife of 30 years when we first started dating after the accident--Know one knew what I ahd and I just pushed on... 2 surgical procedures
    and alot of LOW days --
    Anyway we talked about marriage and I we figured around the 2 yr mark we would know-
    WOW- in April he let me know that he doesn't want to marry me (LOVES ME )does not want to take care of another sick (wife ) women>
    TALK ABOUT THE BEING PUNCHED IN THE STOMAC!
    SINCE WE LIVE TOGETHER I AM NOW LOOKING FOR A PLACE OF MY OWN.I AM AFRAID TO GET SICK INFRONT OF HIM-
    LETTING HIM KNOW I AM TIRED
    ETC.ETC...............I figured before he asks me to leave when I am in a wheel chair- better i should go on my own 2 feet.

    HELP ANY OPINIONS
    SUGGESTIONS
    GLADLY WELCOME INPUT.
    DIANA
    Now thats the right attitude!!!! I'm not gonna tell you that dating won't be easy for you. What a way to start a date! By the way... You can't touch me here, Be careful here, it's hard for me to walk and so forth. Yeah you can expect alot to turn tail and run. And that's ok. You're both being honest. There are many single groups out here on the net that is especially for disabled people. So there's a upside to this after all!! It's much better to be with someone who is gonna love you back unconditionally. Not like youre guy who say's I'll love you only if youre not sick that's conditional love. And doing it now is gonna be the best for yourself. The sooner you start over the better. I lucked out when me and hubby met because his father died of cancer so he had a great deal of knowledge as to what it's like to be sick and hurt all the time. I don't know if yu yahoo or not but there are chat rooms people create and groups u can join for disabled singles. Find someone who's gonna love you for you. My hubby is my best friend, my supporter, my shoulder to cry on when I hurtb so bad I want to scream,he's even been my voice for me when my jaw was dislocated. But yeah now you got the right attitude. Love's much better when it's unconditional and they'll go to the end's of earth for you, sick or not sick. We're here if you ever need to talk!!!!

     
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