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

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.

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.

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

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.

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!:hissyfit:

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. :(:confused::Sinking:

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. :(:confused::Sinking:

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!

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.

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:confused: :sorry::Thanx::Bang-Head:

kbltrn, I feel deeply for the both of you. My wife has RSD now nearly 10 years. I can ramble on and on about the hardship we've gone through from doctors not worth a dime to unresponsive insurance companies, battles with SSDI, my wife's RSD changing and moving around to limb to limb and her taking her frustrations out on a man, who until recently, had very little patients. From experience seek patients, lower stress for the both of you, be leary of invasive procedures. Try to seek out the correct doctors and therapy for him, both mentally and physically. He must move about not wither away idled. Water therapy I would strongly recommend even Yoga. Ketamine might be another treatment to consider. My wife has her good days and bad but there was a time when there was no hope and everyday was very bad. It is a work in progress and there is hope. Next week we vacation at the beach, waterfront, a quiet place, good food, soft sounds, gentle winds, very low stress and of course, one thing she loves to do when she feels up to it is shop! I pray you both will find your happy spot in life and live your lives to the fullest. It may not have been your original plans but plans do change, just make them the best they can be, it can be done and fight for your man. :)

jim&suzy

Hi KB! Well my husband and I have been married for almost 8 years, anniversary is in august, and he was also injured at work and developed RSD 3 years ago. You said that your husband is supposed to be on Cymbalta? but when you bring it up he gets mad? My husband thought that antidepressants were crazy pills and that people should not have to take them, if they are depressed they should just make themselves better. Myself coming from a home where my mother has serious depression, and constantly went on and off of different pills I could understand that it is a truly medical problem, not a crazy problem. Try and explain the benefits to your husband of the cymbalta for the nerves, it actually calms the nerves and helps the pain from RSD. It is not just the mental that it helps. Maybe then he will be more willing to try it, and let him know that if it is not helping in a month then he can try other things. My husband gets very frustrated with all the medications, and he doesn't always want to listen to me (I am the kind that constantly reads online about everything to do with CRPS).
The only other thing I can say is it sounds like your husband is trying to figure out how to deal with this and it is hard. It is almost like losing a life, your former life where you were able to do anything you wanted and move any way you wanted, to one where you can't even hold a cup of coffee, he has to go through the stages of loss. Eventually he will come to accept it and then he can deal with you better. It is so hard. I often feel lonely, missing the things we used to do together, but then I think that if he had been a little slower that day at work he wouldn't have moved out of the way and his whole body would have been crushed instead of just his hand, I am thankful everyday that he is here and I try to let him know that. I try to let him know that I still need him (a problem I have been hearing alot from CRPS sufferers, not feeling needed anymore for lack of being able to do things)
I have rambled enough, sorry. As you can tell my thoughts jump all over, if you ever want to talk I am here. It is nice to know there are others like me! Hope all the sufferers enjoy a pain free day!

Your Strenghth is mine!
 

This year in August will be our 5 year wedding anniversary. And I can say that the last 9 months have seemed like a life time. I tried to talk to him last night about the meds that he was taking. but he just gets mad. We have a 3 year old son that doesnt understand why daddy cant play with him and mom is consumed with work and taking care of daddy. I always try to make time for our son but it is hard. And the stress of workmans comp is not any better. It is dr after dr and lawyer after lawyer and we feel like we are gettng NO WAY. I want to walk away. I feel like my life has been totally forgotten about. My needs and wants our sons needs and wants. Everyday is worse then the one before.
I thank all of you for the support that you have given me and it all helps so much and it is a great feeling to know that I am not alone out there and my husband isnt either. To be 34 and to e told that you will never work again breaks a man to a point that I think there is no return.
I will pray for all of you today thank you again so much:grouphug:

kbltrn, I really understand the stress and the unknown-the fight it takes to acquire benefits that your husband is entitled. He will receive what he deserves but it does take time and patients. I'll repeat, he will receive his benefits. My wife also refused to take anti-depression meds such as Cymbalta and lyrica. In the early days of her condition she was accused by her doctor as being a fake, all the pain was a way for her to get attention. Her own family had serious doubts about RSD especially her mother, but not any longer. She did try lyrica and had a bad reaction to it, but that was her. As someone posted earlier these do help some calm the nervous system down, others not so much. By the way my wife broke her right wrist which triggered RSD and spread. She does say the pain was much more intense and different in the early days than it is now although her condition spread.

I think approaching someone with rsd about getting mental help has to be done in a very careful way. I was talked many times about going back to a psychiatrist before I did. I see looking back that I should have went back sooner because when the mental aspects get out of hand it is harder to get a grip on.
My best pain doctor said to me that one can't be in pain for so long and it not impact mentally. It was such a better way of saying it rather then making it sound like this was in my head.
I don't live with my mom but she is my biggest support and we had a talk about how my condition impacts her. Not till we had this talk did I see how much it truly does. Now I make a concious effort to not get angry or short with her etc. Kb I think you need to talk to your husband. It is not ok for him to take his frustrations out on you.
Kb I don't agree with that doctor about your husband not returning to work. He may be able to if he finds the right treatment. I know a girl for ex who was in wheel chair,dropped out of school,etc. Now she is back in school and I saw a picture of her jumping into a pool. You just never know what treatment may help.

I found this last week and read it to my husband. He said it explained pretty well how he felt. I thought the exercises to do with the kids to show how RSD makes you feel when you try to do something were great, for kids and adults!! I hope this helps, keep strong. Each day brings something new and the best we all can do is HOPE.
It wont let me post a link since I am a new poster, so just google Froggy and Heather explain RSD and it shows up, its on angelfire. (I copied the whole thing it is below, but all credit goes to the author!)
:grouphug:

FROGGY AND HEATHER EXPLAIN RSD TO CHILDREN

Learning to understand my mother's RSD and how to deal with it has been very hard for me. I have learned alot about Reflex Sympathetic Dystrophy over the past few years from my mom and from all our RSD friends. I have met alot of other children who's parents or family members have RSD too and I know from talking to them that they are all as scared and confused as I am about RSD and how we can learn to deal with it and how we can help our parents who have it. With mommy's help, we are making this page to help explain RSD in a way that children can understand. We are hoping that it will help many children understand what is going on and admit how they feel. And most of all, we are hoping that other children who see this page will realize they are not alone!!{{HUGS}}-Heather and Mommy!!

WHAT IS REFLEX SYMPATHETIC DYSTROPHY??
Reflex Sympathetic Dystrophy (also called RSD or CRPS) is a disease that many people get after an injury, operation or accident. It can effect a person's nerves, skin, muscles, blood vessels and bones. We all have two kinds of nerves in our bodies. One kind helps you move the different parts of your body and does what you want them to ( open your mouth to eat ice cream!!! and move your hand to bring the ice cream to your mouth!!) These nerves will listen to what you tell them in your mind that you want them to do. The others kind of nerves you can not boss around. You can not tell them what to do. They make your heart beat, brain think, and make our lungs breathe. We can not make them stop even if we want them to!! These nerves also make you swell, bleed and feel pain when you get hurt. If you are lucky, once you heal, the bleeding, swelling and pain go away. But NOT when you have RSD!! These nerves forget to tell your brain to stop swelling and to stop feeling pain. The nerves start acting real funny and do things that they shouldn't like make your feel way too much pain, swell, get cold or hot all the time and just wont stop making you feel bad.

WHAT DOES IT FEEL LIKE WHEN YOU HAVE RSD??
RSD feels differently for different people. People can have RSD in different parts of their bodies. Some can have it in one or two arms or hands, Some can have it in one or two legs. Some people can have it in their whole body and need a wheelchair to get around. I couldn't understand how it might feel to have RSD so mommy and I played a few games.

To show me what it felt like to have RSD in an arm, mommy had me put on a pair of very thick gloves. Then she told me to try to do things like tie my shoes, pour a glass of milk, turn on the sink, open the door, button my shirt, comb my hair, feed my cats and take 50cents out of her wallet. Boy, was it hard!! I could barely do any of it!!

Then mommy had me try something she does at OT. She filled a bowl with uncooked rice and hid some small objects in it like a button, penny, beads, key, snap and more and had me try to get them out WITHOUT using my other hand to help!!! It was ALOT harder than it looked and I learned why my mommy has so much trouble doing things for herself since her RSD is in her hand and arm too.

Then mommy taught me what it might feel like to have RSD in your legs by having me hop thru our whole apartment on one leg!! I could NOT do it!! I kept falling!!

After that she had me sit with my legs crossed until they fell asleep and had me get up and try to walk! Again, I could NOT do it!! I kept falling!! My feet just wouldn't do what I wanted them to do!! Mommy said that is what it is like when you have RSD - your body does not do what you want it to. When my legs started to wake up they hurt from pins and needles!! Mom said to imagine if they never ever stopped to hurt just like with RSD. I know the pain in my legs wasn't as bad as RSD but I still could not wait for them to wake up and stop hurting me!! In RSD they dont stop hurting :(

IS RSD CONTAGIOUS? WILL I GET IT TOO? WILL MY FRIENDS CATCH IT IF THEY COME OVER TO PLAY WITH ME??
You can not catch RSD from touching or being near a person who has it. Just because your parent or relative has it does not mean you will get it too if you get hurt so try not to worry.

When I got hurt and had to go to the Emergency Room this summer, I was crying because I was so scared that I would get RSD now too. Mommy promised me that not everyone who gets hurt gets RSD. She also made me feel ALOT better when she reminded me that because we know all about her RSD we know what to do when I get hurt and that we will make sure to see a doctor right away if I ever don't heal right.

WILL THEY DIE NOW THAT THEY HAVE RSD??
NO!!!!!! Reflex Sympathetic Dystrophy does not kill you!!

WILL THEY GET WORSE? WHY DO THEY FEEL GOOD SOME DAYS BUT ALOT WORSE ON OTHERS??
Reflex Sympathetic Dystrophy can spread to other parts of the body for some poeple but others never get it in more places. There is no way of knowing if it will spread but if they get treated soon after they get RSD they have a great chance of getting better and not worse!!

There is no one answer for why people with RSD can have a good day and then some really bad days right after it. Sometimes they feel so good one day that they do ALOT more than they should and so the next few days they are in real bad shape because of it. It is like eating a whole bag of your favorite candy cause you think you can but after that last piece you have the worse belly ache ever and it lasts a long time too!!! Sometimes the person with RSD has a real bad day because the weather changed or it got too cold or hot out and this bothers ALOT of people with RSD!!! Sometimes alot of noise will bother them and make their pain real bad!!!

WHY DOES SOMEONE WITH RSD CRY ALOT?? WHY ARE THEY OFTEN CRANKY?? WHY ARE THEY ALWAYS TIRED?? WHY DO THEY FORGET ALOT OF THINGS NOW??
Reflex Sympathetic Dystrophy is more than just being in pain all the time. It causes alot of other problems too like not being able to sleep, being sad and depressed, and not being able to do the things that you used to do before you got RSD.

People with RSD cry alot because they are in so much pain and sometimes can't handle it or take it any more. They also cry because they are sad that they cant do the things they used to do ( like work, or go out special places, or even do things with you like they used to). They cry because they don't sleep well and are always exhausted. And sometimes even their medicines make they cry easy too. I know I would cry if I had RSD!!

People with RSD get cranky alot of the time!! The RSD makes them hurt alot so they get cranky because they don't feel well. They get cranky because they worry about their health and some times worry about all the doctor bills they have!! They get cranky because of how much RSD has changed their lives. Sometimes they get cranky because other people dont understand what they are going thru. Sometimes they get cranky because things like being touched or loud noises are bothering them and driving them nuts so they scream even if they don't really mean to. They are mad at the RSD - NOT at us even if they yell at us alot more now!!

People with RSD do not sleep well. The pain wakes them up alot and depending on where their RSD is, it is often hard for them to lie in bed or to get comfortable. Because of this they are often very tired. Sometimes even if we think they slept a long time, they still wake up tired because they were in a lot of pain and tossing and turning a lot so it was not a good sleep like we all need everyday. They also get tired from some of the medicines they are on and the constant pain makes them tired too.

One of the reasons people with RSD forget alot is because they are in so much pain that it is hard for them to concentrate alot of the time. Sometimes they are so tired they can't think straight. And sometimes the medicines they are on makes it hard for them to remember things well too. They can't help it that they forget alot!! I know my mommy never means to forget the things I tell her. I also know she feels bad when she does. I just try to understand and tell her again. If it is something important we make sure we write it down. But, I know my mommy will never forget about me!!!

WHY CAN'T THE DOCTORS HELP PEOPLE WITH RSD FEEL BETTER??
Unfortunately, not every doctor understands RSD or knows alot about it. Sometimes people with RSD have to go to many, many doctors before they find one who can help. The doctors can try to help the pain go away but they can hardly ever make the RSD go totally away. There are many different kinds of treatments and many different medicines they can try. BUT, since not every RSD patient gets the same help from the same medicine or treatment, the doctors have to try many, many different things on your loved one before they find something that helps them. Sometimes it will help a long time too but sometimes it only helps their pain for a short while and then they have to start all over again finding something that does help them.

IS IT OK FOR ME TO CRY AND BE SCARED??
YES!!! It is very good for you to admit how you feel and to let others know too. We are all scared of the RSD and how much it has changed our loved ones. Crying will help you feel better sometimes just like it helps the RSD patient when they cry. BUT, you have to try to talk about it and NOT cry all the time. You also have to try real hard to not be scared all the time but remember, it is good to admit when you are scared too. It is also ok to be MAD, but remember we are mad at the RSD and NOT the person who has it!! They did not mean to get it and it hurts them as much as it hurts you too. It is hard to see someone we love in pain all the time and it scares us too. Let them know how you feel and talk to other children who's parents have RSD too becuse this will help you learn more, understand more, and handle it more.

WHAT CAN I DO TO HELP??
There are many ways you can help some one with RSD no matter how young or old you are!!! First of all, be there to listen to them when they are having a bad time. Understand what bothers them and try not to do things like make loud noises when they don't feel well or leave the door open and let all the cold or hot air in if that bothers them too. You can help by trying real hard not to touch the part of their body that has RSD even if you get sad because you want to jump into their lap or give them a hug and you can't now. You can help by trying to do the things they can't around the house like take out the trash or carry things or even help them clean. You can also find new things to do together that will make them smile like maybe putting a puzzle together instead of running outside or you can even spend time together watching a new movie. Help them by letting them know you understand if they can't do things like they used to. You can help them do what they can't. You can also help by NOT asking them to do alot of things you know they shouldn't just because you want to do them. You can also help alot by letting them sleep when they are tired and making sure they eat even if they don't want too! AND, MOST OF ALL, YOU CAN HELP BY ALWAYS REMINDING THEM HOW MUCH YOU LOVE THEM!!!

We hope you find a lot of information, support, and friendship here at Pain Pal's RSD Support!! Please feel free to email us if you have any questions or concerns or just need somebody to talk to[/B]

Today has been a bad day for MDH he is in alot of pain. And of course I come home from class tonight and he goes straight to bed. I tried to get a kiss and all I heard was that he was too tired and didnt want to be touched. I truly cant win for losing.
I hope that every one else had a better day. I really pray to the good Lord above keeps all of us safe in his arms and he own prayers!:grouphug:

Good Day!!!
 

I wanted to take the time to send out a quick update.
To be honest MDH has been in a great mood all day. He has stated that he is in a small amount of pain right now but it is a good day for him. And the support that he has showed me in the last two days or my new job has been great. To he him say that he is proud of me makes me wear a smile all day. He has had a good active day with our son and to see our son smile again has been great.
He got the surgery scheduled for the 20th of June for the implants in the pain so I m hoping that this will really make a big change in our lives. All I can do is pray that we have a few more good days like today!
You all are in my prayers and thoughts for the victims and the spouses as well.
Cant wait to read some updates from all you.
Please feel free to fried me on here and send me privite messages. I have gotten a few and I enjoy hearing from all you. You all ave become a big part of my life in just a few days. If it was not for you all I dont think I would have made it through the last week. You all are so wonderful.:grouphug:

hi
 

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,:grouphug:, 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.:hug:

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!

Bravo!!!!!!!!!!!!!!!!!!!!!!!!!!!
 

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

taking the curriculum
 

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 :)

Welcome
 

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