Tired, frustrated and in need of help
 

Hey all

I am new here and in desperate need of advice. My SO was diagnosed a year ago with CRPS and has suffered greatly for all of that time, we were lucky in many respects as my SO was diagnosed a lot earlier than seemingly most, even though that aspect was lucky she still suffers a great deal from the pain, anxiety, depression and from time to time manic outbursts. Life is hard as she has had to reduce her working hours which has put pressure on me to try to keep up the shortfall in wages, her CRPS has steadily spread up her leg and she has isolated herself off from everyone other than a few friends...

For all that time I have seen the pain change for the worst and tried desperately to help out, remain positive and understand but I have seen a rapid decline in the quality of both our lives.

Our marriage is rocky, we have become more like housemates, little or no contact, completely sexless, she sleeps on the sofa every night (when she can sleep to be fair) and I feel isolated, untrusted and alone. I am not even allowed to stay in the room when she talks to the few friends she has kept.

I do love her dearly, even now but more and more I am holding back anger and frustration. We are only in our early 30s and I have always wanted children desperately but now it looks like that will never happen as she has said she now doesn't want them as she is afraid.

I hate myself for this but I don't know how much longer I can cope, I try to look after her as best as I can, earn money in a full time job and keep her sane but the thought of being in this situation until I finally die old, resentful and childless is difficult to stomach. Don't get me wrong I love her with all my heart but we cannot go anywhere, do anything that other young couples should be doing.

I have tried tentatively explaining things to her but its difficult because all she does is concentrate on her CRPS, everything revolves around it, to the extent she has been driving her own friends away, I have tried explaining to her that she needs to understand that they have their own lives and difficulties, etc and she should understand why they don't jump when she expects them to but she just doesn't get it.

Has anyone else been in this similar situation or got any advice because I am ready to crack..... Thanks in advance it would be most appreciated!

I'm so sorry things are rocky. My SO isn't affected, but my mother was diagnosed with CRPS nearly 15 years ago. I was young when it happened, and back then, they didn't really know what they were doing. They just loaded her up on pain medication to the point of serious addiction, and it was pretty rough. It remained that way for a long time. Her relationships with my dad, family, and friends were all very, very strained. She hardly slept at night, and when she slept during the day, it was usually because she was stoned out of her mind because she couldn't deal with the pain. It took some ugly situations before things started to get better, and at the same time, her CRPS got worse.

In recent years, my mom had a spinal cord stimulator placed, which helped with pain, and more recently, a pain pump when the CRPS started to spread above the stimulator's area of focus.

What's helped her most, though, have been two things. One, having a doctor who understands and knows what he's doing. He has been a great pillar of support for my mom. The second, required weekly sessions with a psychiatrist who specializes in pain management and issues stemming from chronic pain. If your wife has neither of those, I urge at least for the latter, if she's willing.

I don't know how much this post helps. I felt very alone for a long time, as my family was quiet about the issue, and my mom only leaned on me for support. It's good to find your own support, as well, so you're not running around screaming inside of your own head.

I hope this helps! Good luck.