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 06-04-2011, 01:32 AM #21
daniella daniella is offline
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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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Old 06-05-2011, 01:28 AM #22
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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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Old 06-05-2011, 08:49 AM #23
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Originally Posted by kbltrn View Post
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
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
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Old 06-05-2011, 12:27 PM #24
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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!
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Old 06-05-2011, 02:24 PM #25
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Default 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
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Old 06-05-2011, 02:54 PM #26
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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.
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Old 06-06-2011, 07:46 AM #27
daniella daniella is offline
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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.
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Old 06-06-2011, 02:26 PM #28
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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!)


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]
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Old 06-06-2011, 09:36 PM #29
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Originally Posted by daniella View Post
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.

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!
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Old 06-08-2011, 09:28 PM #30
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Thumbs Up 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.
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