Hi KB,
I think you are an amazing person for reaching out to others in your time of need...not only for you but for your husband and child too. I know it is hard for others watching people with rsd because most people don't know how to handle it nor do most peole want to. I guess some people figure if they don't acknowledge it then it may not be there haha. I try to use humor in my life esp when I know people are uncomfortable and don't know what to say. It seems to break the ice so to speak.

I understand where your husband is at in his journey with rsd. He is in the first year and that is a year filled with anger, so much physical pain, and the unknown. I cried the first year so much because I was a single parent with a 16 year old and no one to help us. It was terrible. But just take things one day at a time. If he doesn't want to talk about things then after your son goes to bed and your husband had been lying in bed and in a better frame of mind just talk to him. This time is the best time for no interruptions and it is calm and peaceful. It is all about talking how you feel. Six years later I really talked to my son and I realized he gave up alot to become our family caretaker at 16 but I never realized to the extent he did so. I have spoken to a woman who had a child and was constantly ill for years and still is. She has a tremendously supportive husband and family and the child grew up fine (She's 30 now). It seems as though when children are young and their parent gets ill they are better able to adjust to it than say my son was at 16. He was used to me being extremely active and doing all kinds of sports, fishing, etc. with him since he was born so it's been real hard for him to see me lie in bed everyday in severe pain.

I did have another thought once I read how your husband doesn't want to talk about it. Maybe you can find a disabled veteran or someone disabled from your church or area that could talk to your husband on a regular basis about his trials in life. Your husband has to come to the "new normal" that you both have in your lives. Having another man who has already gone through it already may help your husband see things in a new light. It may get him through the tough times now so that you both can get through the hard times together as a couple and raise your beautiful son (and I'm sure very active as boys can be haha) as well. When I was not able to work which was right away I looked at it as a good time to bond with my son. He would come in my room and watch a show with me and we could talk about that. It made him feel still close to me even though I could barely get out of bed. I know rsd and the whole nightmare surrounding it is unbearable most of the time but prayer and humor are what has gotten me through each day. Also, I don't know if you all are pet people but I have an amazing cat and little dog who keep me laughing each day. Maybe you could adopt a cat (cause they are easy to take care of more so than a dog you need to take out). When I am real bad my cat and dog don't leave my side (I usually have one on each side of me). Maybe a cat could lie in bed with your husband (because animals can sense when a person is ill) and he can pet him which helps your hands and arms with PT. My pets are my PT. They keep me moving. When he talks to the cat he is releasing his anger (and lowering his blood pressure) and who knows this might be the thing he needs and your son will love a pet I am sure. Even fish can help. There have been times where I could not get out of bed and I had a fish tank and just lie there looking at them. You would be surprised how neat they are to watch. It was like a science experiment to me to watch their behavior.

Hang in there and let us know what we can do to help you and your family. We are ALWAYS here for you. Listen to what people say but then you need to make decisions on what is best for your family.
Take care,
kathy d

Kathy-
THANK YOU so much! The support that I have received from this group has been amazing.:grouphug:
I Love this group. As for my son MJ he has a dog but the dog is more in love with me then anything. We even have a fish. LOL MJ has an older sister that just moved to Texas a year ago today. and I know that it is hard on him because they have never been apart.
And now on top of this new job that I have I feel helpless because MDH is having to step up to the plate as a parent through the pain. I feel bad but we us fighting for that comp check there is no way that I can take the time off and be home more. We have lost our car and i work 20 minutes from home and I m paying for some one to come get me each day and I am working as many hours as they will let. I hate to say this but this RSD has destroyed our life. We have no car and we cant afford a babysitter or a nurse to come in and help with mike. My poor son has not had a home cooked meal in over a month. He told me last night that he hated microwave meals. All i could do is cry. But I know what i have to do in order to keep a roof over my family's head.
I keep a smile on my face and a weight on my heart that I try not to let my son see.
I am 100% lost and confused. I have to deal with MIKE MJ WORK and SCHOOL
But if it was not for this group I think that I would have packed my bags a month ago. I am at my end:thud:

Hi Kb! Sorry I havent been in touch, we have had other drama going on with a harrassing neighbor! as if we don't have enough to stress about, but that is another whole problem. My hubby often becomes mean when he is in pain and can not deal with things properly. When he is having a "good" day I try to talk it over with him. I ask him if it is really me or if he is just stressed with the rest of his life. He tells me that it is not me and that he really appreciates me and all I do. So I try to hold on to that, all the other crap I just try to ignore. It reminds me of someone who has been drinking and says things that they really don't mean. Every day we are getting divorced, but I just let it go and it seems to be ok. Well I should clarify, that most of the time I can let it go. As I told you a couple days ago I had my breaking point. Just a bad day for me where everything finally built up inside and I had to let it out. I work out and clean the house and be moody to myself. My husband picks up on it but I tell him nothing is wrong. Then the next day when I am in a better frame of mind I explain that it is not him, it was just an overwhelming day.
Financially I think has been the most stressful. We are still fighting with disability, hopefully we will find out in the next month. I don't understand because he is unable to work, but apparently disability is difficult to get, or just takes a long time to get. We never know where our next dollar is coming from. But we have made it work. I am not a big stresser about money, but hubby is, and that makes it hard. I am in college but not working because of the time I have to spend taking care of him and the kids.
Like Kathy said, it is hard and your husband has to go through all of the stages of accepting the things he can and can not do. You both have to try and remember that at least you have each other, rely on each other and let it bring you closer together, instead of pushing you apart. But I know how hard it is to really do that! Communication is key. I find that my husband really likes to know how much I appreciate the things he can do, like when he brushes the kids hair or something. Although we go all day taking care of everything, without a thank you most of the time, you have to be extra strong. I am sure your husband really does appreciate you, but he may not know how to express it, he probably feels frustrated and mad because of the situation he now has to live with.
Hope that today is a better day.

Hi KB,
Sorry but I just had a chuckle because everything you wrote (except about the husband) sounds just like my chaotic life!!! Haha. Thanks I needed that laugh. My dog is sooo in love with me too (Chihuahua Pom mix) that he doesn't like the cat on the bed when he is there with me. He gives the cat the dirtiest looks...it is soooo funny. I have had a 10 gallon fishtank with only one fish!!! And it is small. I had others but he kept eating them all and I had his dad and mom too!! I had to give up my car because I could not drive anymore. It was sooo hard to do but I could not afford to pay car ins each month and it was just paid off. Also, the month I got injured I only had one more college course to go before I got my Bachelor's Degree! It only took me 20 years to do so. I did get it but never could walk down the aisle due to my injury. But I did it and you can too. You are just getting side-tracked for now.

You can say it that rsd does destroy your life (I came close to losing my home in Feb too). Heck, I don't even remember what it is like to NOT have pain. It has destroyed me financially among other things and my son is struggling to help me when he can. Every month for years is a constant struggle. I feel bad that this is his life (and mine too). It has been very difficult being a single parent, ill, and trying to raise a teenager on my own. I have chased him with my cane a few times over the years (albeit very slowly)!

Can you try and get some state assistance for someone to stay with your husband and young son? It took me four months to get an aid (I'm on my third now and that is a whole other story about people helping you). It seems like your situatioin calls for it. Also, maybe check a nursing school or I know high school seniors do community work as part of their program. Maybe someone would be able to volunteer for an hour or so a day at least your husband could get a break and then would be rested before you got home from work.

My son also said the same thing about microwaved food (and eating out). Funny but sad. He told me it has been years he has been doing so and his eating habits are horrible and he hates alot of food. I feel so bad for him. I did "try" to cook a dinner today and it only took me 11 hours to do so haha. I have only done it one other time in the last eight months due to my injury while getting ketamine in the ICU. Eleven hours to make one meal that used to take me a 1/2 hour. It stinks but I have to keep lying down in between it all but at least I did it (I only threw my canes on the floor once today from being so frustrated).

Know that you are doing an amazing job with everything going on! You also need to do something for yourself. I learned that you must take care of yourself in order to take care of others (It only hit me when I was in my early 30s). Even if you take candle lit bath before bed. You just need to wind down for your own health and sanity. I do put myself in "time out" when it gets to much for me. I go in my bedroom and turn all the lights off and just cry in bed. After a bit, I get back up and keep on going.

Everyone here deserves a medal because of all we deal with each day. I have to laugh when I hear others say "Oh, I need a break" and I would change lives with them in an instant to have their problems versus the ones I have. haha. Hang in there and we are always here for each other. We need lots of support to get through it all.
Love to you and all,
kathy d

I just skimmed the responses so I am sorry if I repeat something. I think you need to continue to tell your husband how you feel and that you feel he is not treating you well. I had some issues with my mom where I would have outbursts. This was not fair to her because she goes way beyond the call of duty to help. Anyhow finally she said to me that me being in pain does not give me a pass to have outbursts. She also stated how my condition impacts her that she cries from mental pain and wished she could take this from me. It really put things into perspective that I needed to treat her better and also support her with my condition. Things have changed for the better since both of us don't walk on egg shells as much for each other. I encourage my mom and am happy when she does things for herself and has a life so to speak outside my condition. It helps her cope with me.
It is not fair for him to blame you regardless.

Good Update Bad update
 

I wanted to say thank you again to everyone that has helped to support me in my time of need.
I wanted to say sorry that I have not read any post or posted in a while but I got that new job and WOW I am doing a lot of working and then i come home and I am still working and it is not stuff for my home life it is still my work world LOL. But it feels great to be back at a job that I love.
MDH had another Dr appointment today and the Dr that was trying to day that he DIDN'T have RSD is now singing a different tune! We have been to Dr after Dr after Dr and they all say RSD but this one Dr says no but today after just touching my husbands leg it put him in tear he says OK OK OK there is NO doubt that this is a bad case of RSD. FINALLY everyone is on that same level. He has surgery again next week!
But on the other hand...3 weeks ago his workmans comp was cut off and of course we were not notified till last week by his lawyer and now we had not budgeted for the lose of this money and I am swearing that bills like NEVER before. I am going to have to BEG my boss for more over time. I can't believe this crap and now the lawyer is saying that it will be at least 3 weeks before he will get MDH checks back to him. I hate workmans comp it is worthless I swear. this is the second time that we have been cut off without notice and last time we lost our house and I cant go through that again. We have already lost our car and I am now paying $60 a week just to get to work and back. I cant believe this. All i can do is just pray that the good Lord above with take this weight off my shoulders and carry me through this rough time in my life.
But on the good side again Mike and I are getting along a little better.
I just we will just have to see what next week brings!
You all are in my thoughts and prayers! You all are so wonderful!:grouphug:

By the way can I please get some peoples opinions on SCS. I am considered about him doing this he has researched it and spoke with people about it and they all say it is great but I hear something else.

Good Morning KB,

I know exactly the feelings you are going through. My wife and I are early 30's and have two children four and under and my wife suffers from RSD in her shoulder and arm. When reading through this string, I got the distinct impression that you and I are living very similar lives.

My wife has and SCS implant. Her implant surgery was in Feb, but then her lead moved and had a revision earlier this month. Her results are mixed and hard to quantify because it will often depend on her mood. What I can tell you is that her activity level is equal to or less than before the SCS. Her outlook regarding getting any part of her former life back is much dimmer than before the SCS. I can only think that this is because it did not give her the results she had expected. Without a doubt, we fight more often.

What I am observing in my wife is that the RSD will amplify not only pain but also any feelings, emotions and insecurities she may have felt before. My wife had a rough childhood and adolescene and it was always a struggle before to assure her that she is deserving of love and affection. Now with the RSD it is nearly impossible. We don't really touch each other anymore except for the 1-2 hours of backrubbing I give her most nights...but that is not considered "intimate" because she is in pain. I get told frequently that I never touch her anymore. That one is hard for me to rationalize because from the moment I come home from work until I go to sleep I am either spending time with my kids or rubbing her back. If I try to rub any other parts of her body, she tells me it hurts and then redirects me to the lower back or neck. Anyhow, she tells me almost daily that I need to divorce her so that I and the kids can start looking for a new mommy, or that she is an incredible burden on all of us, and asks me constantly why I keep her around. Her lack of confidence in my love pains me worse than her being bedridden ever has.

Thanks for letting me write...I'll check back with you all soon.

Hi Matt, welcome to the forum! Glad you found us! I have found such relief from posting on here, it is very therpeutic to vent sometimes. My husband has had RSD for 3.5 years, and it is getting worse. It is in his entire right side, internal too, and he feels his left side tingling, plus the added stress he puts on his left side using it. He tries to be positive, but it is hard. I can understand your feelings toward being intimate. I had to adjust because he is either in pain or feeling okay and doesn't want to get in pain, no win situation. I do enjoy spending time with him and that has become our intimate time, talking or just watching a movie together. My husband will often say that we would be better off if he wasn't around but I try to show him how much we still need him. The kids always do too, he just started playing a game with our 6 year old where they write notes and hide them around the house, it something that the two of them can share that is special and she loves it!
Well I just wanted to say hi and I don't get on here as often as I would like, but I check in too so if you ever want to talk you can write on here or message me.
Hoping today is good day for all

Good Morning,

Thanks for the welcome Jaded. Sounds like you have a great handle on things. Question: How often is your husband mean to you or does he ever make you feel guilty for the decisions you make together regarding the RSD.

Today my wife is off to more doctor appointments. She was very upset because she asked someone besides me to take her when scheduled the appointments. I should mention her doctors are 5 hours away from where we live. She made me feel guilty for not taking her even though she asked someone else. Hard for me to understand.

Another question for you all out there: Do any of your spouses with RSD have a hard time staying within the proper amount of prescriptions for a given amount of time? My wife does, but I don't dare say anything or else she lashes back at me telling me that "you want me in pain".

We started couples counseling on Monday, and she did well. She took the counselors suggestions well and understood everything that was being said while we were there. But damn that RSD and troubled childhood...later that evening and last night every piece of misguided logic came racing back to her. She tells me that she knows what the counselor said, but that is a fantasy world and I need to get over expecting her to change.

I will stick it out with her while she attends counseling because I love her...but if she can't wrap her mind around how she hurts me and my children we will have to make the best lives for ourselves without her. I should also tell you folks that couples counseling was on the horizen before the RSD diagnosis. This disease has simply made everything worse. It is very unfortunate, but I feel that raising my children in a loving household, without guilt and anger, is the most important priority...not RSD.

Thanks!

Hi Matt, I have a good handle on things most of the time, but it does build up and sometimes I just have a day or two where I need to break down too, that was about two weeks ago. It is tough living with someone who is in pain all the time, it is almost like anything that is happening to you is not half as bad as what they go through. My husband is mean when he is severe pain, which was all the time, the doctor just put him on fentanyl patches and that is working for now. He was able to stand on just his right foot yesterday, which he hasn't been able to do for a year. I always attribute his meanness to his pain, and I refuse to believe the things he says because it is his pain talking. When he is out of pain I discuss the things he said to get his real feelings, that has helped us alot. We moved a year ago, staying close to home, my decision. He wanted to move somewhere with lots of land, now we are looking to moving again. I figure I can go to school anywhere and if it makes him happier. He let me choose a year ago and it has not been great living here (horrible neighbor), so his turn to choose. Hubby is always short on his meds, it seems that he gets tolerant to them and has to take more. It makes those days right before the dr appt really bad, but his dr are really good about trying different meds to see what works for him.
Since my husband has been disabled it has been a big change to our lives. I focus on the things we can do now, it is hard, but you have to let go of your past life before RSD, and work on building a new one around the RSD.

thank you...i definitly have a lot to reflect on.

*edit* Let me be very clear when I tell you all I love my wife and am doing everything in my power to keep our relationship healthy.

I really appreciate your feedback and my level of acceptance of this grows each day.

I feel it is not ok regardless of how high her pain is to be taking more meds than her doctor rx for her. This can be dangerous. So by you stating what you did to her it is out of care not that you want her to hurt. Could you maybe go with her to a doctor apt and explain this to the doctor? Maybe he can adjust the meds or add in a safe one.
As time has went on I have really worked hard to change how I respond and speak to my support my mom. I used to not on purpose but say things that I think made her feel guilty or get angry easily. She stated that I did those things and it opened my eyes. It is not ok just because I was in pain to do this. So now when she suggests something I try to be open to her suggestions and know it is out of love. If I am hurting or upset I either say I am not up to talking or try to remind myself that it is not my moms fault and that I need to be calm and cope better. Same with your family members.
This is not easy I know and takes time but I think you both need to speak up for yourself. In the long run it makes things better for everyone.

Good Morning,

Her meds were adjusted yesterday, so I am hoping the new cocktail will have a positive affect on her.

We were given some very disappointing news that her SCS has basically become ineffective and that we needed to stop thinking about her RSD in terms of pain levels but instead in terms of her levels of activity or functionality. We are fairly young and it is really hard to wrap my mind around my wife never ever being able to do certain things with me and our kids.

Last thing to try and get the RSD under control will be the Ketamine infusions. Problem is the treatment that has been suggested to us is not covered by insurance and would be quite expensive. *edit*

Thanks!

Look into fighting the insurance company in order to pay it. This happens all the time with infusions. Often times you will prevail. Talk to her doctor who can help or give good advice. Matt I feel for you and your wife. I can relate to you because my wife has RSD--nearly 10 years now.

Wow...10 years!

How dibilitating is her RSD? What level of activity are you two able to do? Have you raised children around the disease and how has it affected them? How long have you and your wife been together? My wife and I were best friends for about 6 years before we married about 5 years ago. Now she wants the best for me and our kids...and she thinks that will be without her. Sometimes I think she is right, but the fact of te matter is that she is part of our family and needs us. What kind of lesson would I be teaching our children if I judged people by their health or intolerance of others?

I think we probably could pay for the treatment up front (if we could afford it) and then fight to get it paid...but really we just need to have it covered and worry about other costs (co-pays, plane tickets, hotels, etc.)

Thanks!

We haggled with the insurance company BCBS who rejected payment for ketamine infusion, but it was brief, not long at all, maybe a couple of weeks until they approved it with a letter from her doc.
We do not have children, if we did, things could have turned out a bit different. I can't imagine the mess we would have been in. We've been together 30 years. We met when she was 20, I was 21. We are fortunate that she worked for 30 years and eventually was able to receive SSDI and medicare but that is a battle that was stressful and took some years off of me. We did argue constantly and still do sometimes. My wife had her bags packed for a couple of years, ready to bolt, and did a couple of times but came home after a few hours. The reason was she felt the same as your wife---being a burden. But the stress is what really takes a toll on those who have RSD and the trick is to relieve that stress in conguction with decent treatment for her pain. The constant unrelenting pain effects the thinking, always keep that in mind especially where logic is concerned.
However, I did come to the conclusion long ago that even though our long term goals have changed I could not ever leave her. I'll look out for her like I did when she was healthy. So, we changed our plans which aren't bad just not as wealthy. The scaled down plan which has its positives for sure.

As far as activities, well they've changed. My wife can walk even though her RSD has spread to all limbs. Her original injury was her right wrist. One thing I need to learn how to do is go out and have fun on my own because many times she just isn't up to it. She has no problem with me having a night out, its me that hesitates, but not always. If we go out together to socialize somewhere I make sure she has a place or spot she can rest if need be if the music-people get to loud.

If there is anything I do for you guys just let me know.

jim

Hey Jim,

I really appreciate your reply.

My wife was diagnosed with RSD a little over a year ago. She had a SCS implanted in February and a revision less than a month ago because the paddle lead had moved. Now the coverage is causing the RSD to flare instead of calm it down. There had always been hope of a change of pain level before but now it basically seems like I need get used to the idea of it beginning to spread (she already is starting to feel it in her other arm and back) and our new lifestyle as a disabled family.

We are fairly young and have two children four and under. I work a full-time office job during the day and have begun to look for a graveyard shift part-time to try and cover child care for my kids while I am at work. We have just completed the applications for SS benefits. Unfortunatly my wife has not worked for 30 years...but we have heard that she can tap my benefits as a spouse. Hopefully she gets approved the first time and can relieve a little financial stress.

I hear a lot of what you and others here are saying about the pain causing the argumentative nature and misguided logic...but how do we actually handle those situations? With many "yes, dear" and "whatever you say dear"? My wife can read me clear as day and knows when I am just agreeing with her to avoid an argument. Do I have to just get used to a lifestyle where I occasionally know my wife is going to blow up at me or my kids for no real reason? Do I just get used to the occasional mean spirited comment and know that in a couple of hours, or days, my loving wife will return? Doesn't seem like much of a happy life to me.

Thanks!

Sorry for the delay Matt, we've been out of town. What is surprising to me is how quickly she was approved and received a SCS after being diagnosed with RSD. For my wife it took around 2 years before doctors started whispering the name RSD. My wife's approach to RSD (keep in mind everyone has their way of dealing with this monster) is avoid all invasive procedures at all costs. The most invasive procedure she tolerated was a 4 day ketamine infusion and a 1 day lydocain infusion, this after 4-5 years with the disease. No help there. She also will get up a move about, work her gardens/flower beds, cook dinner and pack my lunch. Being idle is not good for those with RSD. Matt you may want to post on the SCS sticky thread also about the issues your wife is having with her SCS.

Matt, your wife most likely feels extremely guilty and has let everyone down, I can not stress that enough. The constant pain is something she is now trying to deal with constantly, every minute, everyday. She may be feeling that she is a drag on the family and must leave. She will need to learn to cope with her condition and others need to help her do that. Not easy with children for sure, but plenty on this board have done it. It just takes time. Stress is what really makes things difficult, money and the lack of pain control is usually the culprit not to mention RSD itself. Also, RSD changes over time. My wife explains it this way in the early days: Sharp burning pain, twinges of electrical pains shooting throughout her limbs. Now she describes it as a deep in the bone pain but not as bad as the early days except this kind of pain spread (I'm sure she'd tell it differently). Make no mistake she is in a lot of pain today but is a different kind. My wife also has a place in our home where she can sit and be alone if she needs it. I will say at this point in time things have improved but still not easy until we institute plans to settle outside of the rat race we now occupy.

Matt, do you have help from extended family members?

Jim,

I am "Matt's" wife, I do believe. We have always tried to stay on seperate support groups but I accidentally stumbled upon this forum and well just knew. As hard as it is for me to read through these posts, most of these things are issues that the two of us have discussed. *edit*
RSD is devestating. I am trying my best to learn to cope with the situation, although it is a great struggle. I have recently started a blog as a way to connect with others going through similar situations. Having a family with RSD is hard, to say the least.
Jim I wanted to thank you for all the supportive advice you gave my husband. He was feeling a sense of relief by being able to communicate with you. I don't believe he will be returning to this site now though, as unfortunate as that is.
To all the family members out there, thank you for helping all us RSD patients as we try and cope with this disease.
Eli

Never gone over my Rx meds...
 

I just wanted to defend myself, just a bit. I have NEVER taken more Rx medication than I am prescribed. My husband was referreing to an alternative medication that is not an opioid or narcotic, also ALL of my doctor know I'm on the medication and my usage. For some reason that was the only thing I really couldn't understand. I know it's different being a spouse than a patient, but I really just felt like I need to say that I have NEVER taken more prescribed meds than allowed. Thanks for letting me vent.

guess I should clarify when I said that my husband takes more meds too, some days he may not need to take as many as prescribed but the next day he may need more. Most months he is dead on, but some months he is short, he always talks to his dr about it and the dr tries to adjust the meds accordingly.
Hope that you all are doing well.

Hello Matt,

Your words have haunted me and I am posting to encourage you to continue to seek our support. I am humbled by what you are taking on at such a young age. What an incredible job you are obviously doing support your family!!! I can't begin to imagine the stress you must be under.

It is so difficult to be in constant unrelenting pain while mourning the loss of our former lives. But the most vicious pain does not justify mistreatment of a caretaker. I am humbled by your strength, your insight and your commitment to your family and in particular to the needs of your children.

I have been amazed at the outpouring of support from veterans who have been dealing with CRPS for years. Please reach out to us again!

Take Care!!!

Matt is no longer going to be participating in this site for personal reasons. He did receive a great deal of benefit from talking with this group. If you would still be interested in speaking with Matt and providing support please send me a PM. Matt is the best caretaker a woman could ask for. He has done so much to care for our family. I would love for him to have an outlet, like some of you, to vent the frustrations and emotions all care givers face. Thank you.

Hello Matt,

The wonderful thing about NT is having a safe place to vent. The private struggles shared in this particular thread offer some much needed space from the sometimes crushing demands of the daily responsibilities. If posting is not something you are comfortable doing now please send any of us a private message directly.

Best wishes for you continued strength in facing the unique demands of your situation.

Take Care!

Hi, everybody:

I have RSD in my left knee/leg. My boyfriend, who is a police officer, told me he wished he could take my RSD so I would not suffer anymore and so I could be a better mother for our two-year-old baby boy.

He and my baby almost lost me when my boyfriend, who was in the apartment without my knowing about it, barely caught me when I jumped off the 11th floor balcony because a doctor had taken away my narcotics without my consent and the RSD pain was excruciating. Now, I got them back and, at the same time, I got back a life worth being called a "life".

Kitty,
Thank you for sharing such an intimate story with us. Sometimes we lose are perspective on what's important in life when the pain is so overwhelming. I keep a picture of my husband and kids on my night stand, when the pain makes me wish to be put out of my suffering, I try and meditate on their pictures. They are the loves of my life, and I pray I will never let my pain come between us, as much as it tries. The pain has become another member of our family, its been hard for my husband and I to accept a third member into our marriage (especially such a crummy one). The more we are able to grieve the loss of our dreams, and focus on our new dreams the better we seem to cope. Thank you again, for the reminder of why we keep fighting, no matter how painful it gets.

wow
 

wow my heart goes out to you,iam lost for words.:grouphug:


"quote' Hi, everybody:

I have RSD in my left knee/leg. My boyfriend, who is a police officer, told me he wished he could take my RSD so I would not suffer anymore and so I could be a better mother for our two-year-old baby boy.

He and my baby almost lost me when my boyfriend, who was in the apartment without my knowing about it, barely caught me when I jumped off the 11th floor balcony because a doctor had taken away my narcotics without my consent and the RSD pain was excruciating. Now, I got them back and, at the same time, I got back a life worth being called a "life"."QUOTE"

I do not havea spouse he die of cancer last years but I do have a son who has rsd.

Hi I am so sorry for the loss of your husband and also the heart break a mom has watching their child face this. I know the impact it has on my mom. I see you are new to the boards and I hope you find support here like I have. If you want an email buddy I am here too.

Spouse of RSD
 

Hi,
My name is Mary. My husband has RSD. YES, YES,YES, The feeling of sadness, lonliness, and helplessness, is at times unbearable. We have been married 38 years, and he is my best friend. How do we deal with the fact that my touch is the cause of increased pain. Cannot talk to him about it because it increases his guilt and stress that "He is doing this to me".Yes, I am sure there are others out there like us.
Mary :(

RSDJaded: I'd like to thank you for that amazing post about teaching children how to understand RSD. Not only does it help children, but I think it also gave ME a new perspective.

This is my first post on these forums. My wife has had RSD for about 4 years now. In addition to her RSD, we've had an unbelievable string of bad luck for the past couple of years, plus an extreme increase in responsibilities (raising 3 young granddaughters). I should mention that after nearly 23 years of marriage, she and I are still very much in love and we are best friends. We're in our early 50s.

I've been a very active, high-energy, upbeat person for most of my adult life, but lately I've caught myself slipping into a victim mentality. I decided to resist that form of self-indulgence, so I did a Google search for "RSD spouse support," trying to be proactive. That search led me here.

I must admit though, that when I began reading this thread last night, it had the exact opposite effect from the one I was seeking: I had a total meltdown. Reading about some of you being bedridden or hobbling around with a cane - it seemed like a grim preview of our possible future, as my wife's RSD is still manageable enough to allow her to be fairly active, albeit with a lot of burning pain.

I'm so sorry that everyone on this thread is having to deal with this devastating disease, but I'm humbled and grateful for all of the honest insights that all of you have shared. My wife is still active enough that I don't consider myself her caregiver, but I do think my role is to be her "rock." Regardless, being in a support role is confusing and stressful.

I'm an extremely empathetic person (the reason I couldn't hack it as a search and rescue volunteer - too emotionally involved), so it's impossible not to feel sorry for my wife - the person I love most on this earth is SUFFERING and that just kills me!!! But as others have pointed out, she doesn't need my pity or for me to act like her disease is a catastrophe. Especially since we're determined to provide a positive and loving atmosphere for our grandchildren.

But lately the stress of our financial problems (several of which are associated with her being unable to work, due to RSD) on top of a few recent deaths of loved ones, plus the usual stress of watching her endure her pain, has made me feel overwhelmed and depressed. Overall, I think my wife and I have done a very good job of confronting our common enemy together and maintaining our closeness, but obviously I can't take away her pain or feel it for her, no matter how much I empathize.

My wife's RSD began after a finger injury on her left hand. That hand hurts all the time, but the rest of her pain has spread and seems to migrate between both of her hands, her feet, her shoulders and forearms. Occasionally she feels it in other places, like her neck and face, which really makes me nervous. I'm terrified of what might happen to her in the future.

I'm still struggling not to cry as I read all of your posts but some of your insights are starting to sink in a bit. The whole thing about mourning the death of your old life - the one where you spent years dreaming about a certain lifestyle and set of goals - and eventually moving on to build a new life around RSD... that was really difficult for me to read and accept, but it's a process that I'd already recognized and have been trying to come to terms with.

Most of us probably realize that mourning any major loss is a process involving different emotional stages that take time to work through. I feel like I've been so busy trying to be strong that I'm only now allowing myself to break down and weep over it. I suppose I need to go through that before I can work through other stages, like anger (at the disease and our circumstances, not my wife!) and eventual acceptance. Thank you all for helping me to begin that process, no matter how painful.

That was beautifully and profoundly put. I am glad that you have found a place for support and that you have such a strong and priceless love relationship. That goes a long way towards healing all wounds.

It is okay if you cannot always be a rock. We cannot intuitively know the impact our suffering has on our partners and your wife does not want this disease process for you any more than she wants it for herself. She will understand when you need time to process, grieve, cry, gnash your teeth.

Remember that grieving isn't linear. You will revisit "stages" you thought you were finished with. Acceptance may come, then be lost for a time. This is normal and expected. It is obvious that you are motivated for healing. If you have access and resources that will allow either of you to attend counseling, do so. If not, sliding scale community therapy centers can often be found. I found working with someone experienced with traumatic life change and chronic illness to be Very, Very helpful. I am better able to be present for my family and don't feel as "eaten" by what I am going through. It has also helped me manage my pain.
There are many losses, that is undeniable, but there will also be small gains. I am more patient, kind, laid back and understanding than I have ever been. Do I wish I could have gained this without suffering. God yes, but this is how it happened.
Hang in there, be kind to yourself, we are rooting for you
Sending Healing Love :hug:
Littlepaw

I feel like you're telling my exact story. I was searching Google looking for a support group or something like that. My husband got his ring caught in a press last March and slowly he's cone to be diagnosed with crps. He seems to be getting wise than the stories we read online though. The pain is so intense in his left arm and leg. He gets boughts of confusion. His eyes go blurry. Sometimes he can't even stand. I feel so helpless and exhausted. I'm 21 in college, working, and taking care of my step soon and husband and keeping the entire house afloat by myself. But no matter what i do, there is still no way to help when he tells me he's in pain. I can't even touch him. It's so depressing

Too Many Tears
 

Hi, I am in almost that exact boat as everyones story I read and and struggling to see hope and happiness. My husband had his first surgery on his left elbow around 2006, then left wrist 2010, and then left wrist again 2013. The CRPS was diaganosed in 2014, it was probably there before the 2013 surgery since that one was exploratory to clean up what the doctors thought was causing the pain but who knows. We were married in 2011, and daughter was born in 2013. By the time she was 9 months the pain was excruciating and he could barely even hold her. The pajn now is his entire left arm and has spread to the right arm. He has tried nerve blocks, had a spinal cord stimulator implanted to help with the pain, and most recently started on medical marijuana. His pain is non stop- although both the spinal stimulator and medical marijuana has helped, he still has some very bad days. On his bad days any frustration or annoyance he takes out on me becoming verbally abusive, controlling, and demanding. I do everything inside and outside of the house as well as keep his personal needs and sexual needs met; and ask very little of him that may cause him pain. I haven't seen the man i fell in love with in so long, i dont even know if he is still in there under all the pain, anger, and depression. My friends say i should leave him as his behavior and actions towards me are becoming much worse. I feel torn. I know his pain is real, i know i dont love the man this disease is turning him into. But I also know none of this he asked for and the pain is out of his control. I also feel I am abandoning the wedding vows of in sickness and in health, except that his illness is now significantly effecting my health. I feel like a horrible person if I asked for a separation because I know there are this his disease makes it impossible for him to do for himself. My friends say i should think of myself and our child- when I do I think of January 2018 when I had fell and was in an aircast and on crutches. I was outside snowblowing the driveway with the aircast wrapped in a garbage and using on crutch to take the weight off me ankle. Should i be hung up on "in sickness and in health" when it only goes one way. I am so depressed and know I need to do something but I also dont have annyone to talk to that understands my internal battles. Any words of wisdom or sharing of your battle may be helpful. Thanks .