wife has RSD
 

My wife has RSD and I have no idea how to help her. It kills me to watch her suffer in pain day after day and know there is nothing I can do to fix it. I can't help her. She just sits there and cries. She tries not to let me see it but I see her brush away the tears. Sometimes when we are watching TV she is just staring out into space looking like a lost child. I don't know what to do. If I reach out to comfort her, it hurts her more. If I hug her, it makes it worse. I don't mean to sound selfish but I miss my wife. I hate to see her suffer like this.
kdh1984

have you considered trying ketamine? it has really made a difference for my daughter. FB has a place called Ketamine Klub which has some very valuable resources and patients who have used it.

I am sorry to hear about your wife's suffering. The best support I can think of is just to be there emotionally and mentally for her. I must ask about her medications, is she getting adequate coverage. Does she see a pain managment dr? Have they tried any treatments? I know it is hard on my husband when he wants to go and I can't. My husband says try and get out as much as you can. It will make you both feel better. I know for me I needed an antidepressent to get over the daily crying, then I felt like doing more. Again I am sorry.

I am so very sorry to hear what you and your wife are going through. I don't know anything about her situation or what treatments have been tried...but you need to help support her and help her to realize that she is not alone (even though it can feel that way sometimes) and that there is hope for her. There are a lot of different treatments out there: meds, blocks, physical therapy, ketamine, tDCS, etc. First step is to find a good doctor...one who is compassionate and who your wife trusts and honestly believes will do everything they can to help her. Also very important is to work with a physical therapist...again...someone she trusts and feels comfortable with who will work WITH her to achieve her goals. So many of us with RSD have ended up with crummy doctors and/or physical therapists and they just make you feel like there is not hope because nothing works. Getting the right doctor/physical therapist can make all the difference in the world.

Now...for you...all I can tell you is that even though you want to do more that just by being there and supporting her...you are helping. I live with my boyfriend and don't have any family near by anymore (though his family has been wonderful). Now...this may sounds strange...but honestly the thing that he does that has been the greatest help to me is that throughout EVERYTHING he just treats me normal. He does not treat me like I am broken...even when he had to wheel my butt around in a wheelchair. He just did the things that he knew I couldn't do...but he never made a big deal about it. When we talked, it was just like we always did. He wasn't scared to talk to me because he knew I was suffering and he didn't constantly ask if I was okay and call attention to the pain. This...believe it or not...helped me take my mind off the pain. It was the one, very small, bit of normalcy in the middle of a situation where I felt anythign BUT normal.

When I was doing my physical therapy and learning to walk right, etc, he would remind me to walk normal...never anything more than that and never too forceful...just that reminder to not walk bent over or not to limp, etc. He was supportive during every doctor's appointment, knew everything that was going on, would help me with whatever I needed...but our relationship did not revolve around my RSD and he still treated me and acted around me just like he always did. And that helped me a lot. For me at least...I needed to know that I had things in my life worth fighting for. Your whole perception of life and everything changes when you have to live with RSD pain...all day every day. If you don't have those touchpoints in your life...the things that remind you what you need to fight for...it's easy to lose sight of it and just give up and give in to the idea that your life is over.

I'm sure it's not the same for everyone...but this has been my experience and what has helped me. I know you want to do more...but you cannot fix her. You can just be there for her, support her while she goes through this, and keep trying to remind her that she has to keep fighting...that there are things worth fighting for.

This is a great place to find information and support for people with RSD. There are other members who are on here because their loved ones have RSD and hopefully they will pop in and give you some advice from their own experience as I am sure it looks different from that side of things than it does from our end for those of us with RSD. Feel free to ask any questions or even just to vent. We're here for you.

I'm very new to the diagnoses myself and ended up breaking down the other night in front of my husband. I try to hide it because I don't want him worrying. By you asking this question about your wife, it already says that you care and want to help her.

For me, just him acknowledging that it was "ok" to cry made me feel better. He asked what he could do. Half joking/half serious, I said "cut my foot off". It took him by surprise, but I started laughing and it eased up his fear. Just having him there to comfort me is a big deal.

He reminds me on a regular basis to use my foot but not to over do it. He does not baby me even when I start becoming a sissy about this nasty thing :o. At first he was annoyed by my research and rambling off his ear about it, but he's come around and started realizing that it is a big deal and a good thing for me to figure out.

KDH,
I know my husband feels the same way. Seldom does he not know how I feel. But it is better after 2 1/4 years, because we have both learned how to deal with the pain. Doesn't mean he's never frustrated, because just yesterday he had to drive me 75 miles to the Dr so I could get a shot of pain reliever because my pain was out of my control.
Just the fact that you are on here looking for answers, shows your desire to help. Keep yourself updated on RSD/CRPS, there is plenty of reading material.
Even though affection is difficult, it is necessary, more than ever. She needs to know you are not going to abandon her as she needs you more than ever. Your worlds have been turned upside down, figuring what your new life looks like is a journey, a process, not an overnight redo.
With prayers for peace and pain relief,
pat