NeuroTalk Support Groups - RSD and caregivers

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - RSD and caregivers (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/144258-rsd-caregivers.html)

So very sad that RSD is so misunderstood not only by loved ones but the medical community as well. Strange to tell a doctor you're wrong, do your homework. Families are torn apart from this condition because of this. The constant pain effecting those with RSD then their minds, not the other way around. Suzy's pain was so bad at one time I just couldn't understand. Her arms in the air as tho they were on fire, teeth clenched in pain, teeth that she was unable to brush because of pain. Doctors fearing she was faking, family members taking her misery personally and have nothing to do with her any longer. It's a long battle that we are winning, slowly but surely.

Patti, give your husband a smile, just a simple smile and that, I'm sure, will make his day and make him feel he is contributing to the betterment of you both.:)

Take good care,

Jim & Suzy

Quote:

Originally Posted by RUReady (Post 740853)

Recently my wife has been struggling with the role of caregiver , which I understand , as a huge burden has been placed on her . I feel guilty not being able to do the things I could do before and try to look at it from her perspective . The best I can come up with is RSD is similar to having a terminal illness yet you have no end line strategy , you have no guidelines as to what is coming next and what to expect . Does this make sense and how to you help your spouse better understand ? I am not a complainer by nature and have always been the one providing help when needed so I guess it is an adjustment as well for me in a way . Any insight would be appreciated .

Hi RUREADY, my husbands read your post and said that sounds like him, feeling guilty not being able to do what he used to and me doing what he used to do, now im his left hand, and i have myasthenia gravis for 35 yrs so im a veteran he was my caregiver and still is but limited and he feels very sad about not being able to help me, but i feel its my turn to help him anyway i can since i feel strong at this point in my life its my pleasure to help, me being on the other end the spouce of a RSD person i dont know if a spouce can better understand,, frustration is what we see, seeing our spouce in pain and tried from no sleep and trying to do one thing but all they ( he ) can do is lay in bed and try to get to the next minute of the pain passing, she might like to come on this site and read post of others to better understand like i did and post a post of her feeling it does help:grouphug: all she can do is the best she can and you as well :)