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 .