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.

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.
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

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


"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"

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
Littlepaw

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 .