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 03-16-2019, 09:57 AM #1
Kldemaio Kldemaio is offline
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Join Date: Mar 2019
Location: Western New York
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5 yr Member
Kldemaio Kldemaio is offline
Newly Joined
 
Join Date: Mar 2019
Location: Western New York
Posts: 2
5 yr Member
Confused Running out of fight

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. At 11 months she was hospitalized for a respiratory issue. The following 2 years resulted in 4 more hospitalizations including and PICU stay and surgeries. We finally found out her enviromental allergies were the partial drive behind her respiratory issues. We moved within two months finding out our old house was the culprit behind her exposure to her allergies. Since the move she has stayed out of the hospital. If only helping my husband was as easy as moving. The pain 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, Kim
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