Being new to this disease it s very difficult not to feel alone My family...
I am just exhausted and in severe pain. Only on gabapentin and an anti-inflammatory...and I just need to rest. Sleep is far and few between. My son has syringomyelia and is having a bad pain episode right now too...so very stressed. So...yeah, right now it's a struggle to keep that positive attitude. I have my first pain management appt Friday. Hopefully, relief will follow
I completely understand. My mom tries to empathize, but my dad thinks I need to suck it up and walk it off.
I get it. I have people that want to understand, but get frustrated after a few weeks. I fall a lot, so it ends up being embarrassing after my hundredth fall... :-/
My husband says that he feels helpless because he can't take the pain away. He doesn't complain or gripe when I miss work with no pay. He is the one pushing for me to get disability. He cooks (hamburger helper and tuna helper) gets old after having it so much but trust me I never complain. I do try and keep a positive attitude even when going thru breast cancer and then chemo. I have vascular issues and in one year I had 12 procedures but the way I think is that someone out there has it worse than me. Hang in there and see if he will do some research with you.
Some people close to us really want to know more about the pain we are feeling (while still feeling helpless to "make it better")... I suggest, and have used, "The Ice Water Challenge."... https://www.youtube.com/watch?v=GPu5A4zv-rQ
My fiancé Ang Overbay has CRPS and I have read and researched trying to find things to help her but also to help me understand more. I see the pain she's in and I want to take it from her. Anyone who has a spouse that isn't supportive I hate that for you. There are days like today that when Ang got off work she came straight home and went to bed because she's hurting so bad. The way I see it is if that were me I'd want her to be supportive.
Dee I hope you get some relief with your pain management appointment and maybe your husband will go with you. What he needs to understand is it's hard to keep a positive attitude when you're in so much pain you can't think straight.
I was married 13 for years when I was injured and developed RSD. Our boys were 15, 12 and 11 at the time. I went from being a full time program manager, involved sports mom, and wife to practically catatonic in between screaming in pain. I'll never forgive myself for not being there for my family during that time... And the person I am now is so different than the person I was before RSD. My husband left me in 2013. He cited my RSD and specifically that I was "never the same" after my injury. I guess some people get it. And some never will.
Sad Laurie Crowley but not to many men will be supportive keeping marriage vows after rsd. If someone marries them knowing rsd that is pure love. I am so sorry for the loss of self we feel after having and the loss of husband.
Sending u a hug.
Thank you, Shawn... Don't get me wrong, he is a wonderful and loving man. I honestly think it was a momentary lapse of reason on his part when he said what he said. With that being said, he hasn't looked anything up and it might just be because he doesn't want to know how much worse it might get. I know he supports me and loves me and that this is very difficult for him...it's easier to focus on something else.
He needs to go to your appointments with you so he can hear about it and ask questions. Also, going to a counselor would be a good idea before it gets too far gone. This level of pain is misunderstood by others because they haven't ever endured anything like it before. Plus, it isn't something they can see or one that is more common like cancer or heart disease. Good luck!
I think that's the hardest part. Your husband probably didn't even mean to disappoint you or make you feel so unimportant. He just doesn't understand the disease. He probably feels helpless. I would sit down with your family and show them the research on RSD/ CRPS. I've had this thing for ten long years. It has definitely put a strain on my marriage & family life. But, we have survived! I'm so sad about your pain but I"m gald you found us. Feel free to vent anytime!
Dee it is hard seeing the woman I love in pain. And to think it will probably get worse is scary. I'd much rather it be me then her hurting. But I think in order to truly understand what she goes through I have to do my part to learn about CRPS no matter how hard and scary it is. Maybe in my research I can find something that may help her or someone else.
Dee: Unfortunately this is a very common problem. After more then 5 years providing simplistic but dramatically graphic film clips, (what could be easier to digest?), some of my friends and family continue to forget. Some even continue to blame me. It hurts when you fight to live life despite the disease and yet people give up on you. Some people want to put you in an 'understandable box' which 'could' label you as addicted to pain medication. Its impossible for some poor folks. Good luck to you and hope things work out ....