NeuroTalk Support Groups - Rsd and lost what to do next?

Is there such a booklet? RSD is such a horrible thing to deal with, and everyone really has to find their own way to cope with the things we go through. I can't really say what will work for your daughter, but here are some things that have worked for me over the past 2 years dealing with this awful condition. Sorry it is so long, and I don't know if it is all stuff your daughter will be able to apply to herself, but I hope it can.

One thing that has been really helpful for me is connecting with other people with RSD or chronic pain...knowing that I am not alone in this. This site has been great, but I have also connected with people who share some of my same interests (cross stitch) and in just getting to know those people I have found that there are so many other things out there (not just RSD) that can rob people of their lives. Finding other people who can stay positive and who recognize the joy in life DESPITE their limitations can me SO motivating.

The next most important thing for me was realizing that I am not my disability. It sucks and my life has changed so much. You lose so much with RSD. But you are still you and you have to make a decision (and no one else can make it for you) that you are more than RSD...more than the pain. Every day is a struggle to remind yourself that there IS more than the pain, but if you can do it you will find that it is worth the effort.

And support from family and friends is of course key. But not necesssarily "support" in the sense that people do everything for her. She has to know that you are there for her, but that she is able to do things for herself too. The best support I have gotten is from people around me treating me like I am normal. This does NOT mean them saying that I am fine or that there is nothing wrong with me (because of course that would NOT be supportive). But they don't treat me like I am broken. They help me when I need it, will do things for me when I ask, but every conversation does not revolve around what is WRONG with me. Does that make sense?

Also, I think it helps to know that I CAN get better. Not all the way better, and there has not been much success in getting the pain under control (yet), but that with hard work you can gain some small steps towards normalcy. It doesn't help to fool yourself into thinking that there is some quick fix to what she is going through. Instead, it takes hard work, and way more time than you want it to take, but you can get through it and get your life back. Maybe not the same life you had before but still a good one. Doing small things can be very rewarding. You said she can walk without a cane sometimes, and that is great. She shouldn't be thinking of that as "less than she was" but as "hey, I can walk on my own." But even if she has to walk with a cane, that shouldn't be a "bad" thing in her mind. Life is different and not the same as it was, but who cares if you need a cane or a walker? She should try out different things to see what can give her the most freedom and mobility and then be excited by that freedom and not focused on the idea that she "needs help."

And lastly, she needs to find things in life that still bring her joy, no matter how small. Maybe that is connecting with friends, finding hobbies that she can still do, laughing with family...whatever works for her.

Now, this doesn't all happen at once, and she should never stop pursuing medical treatments that will work. This isn't about settling because there should be constant goal setting to make her life better and better. But it's important that she not beat herself up for "bad days" or setbacks.

Now...the second set of questions you asked: Who's supposed to take care of her, can she be left alone, etc. Obviously the answers depend on a lot of things. I went through months where I couldn't stand at all so I was "trapped" on the couch for MONTHS. It sucked. But, I could crawl. Crawling was painful but I could do it so I did. I was able to get myself to the bathroom, crawl in and out of the tub, and get the occassional food item from the kitchen. We moved my clothes (the ones that I could wear without pain) to the first floor, set bagels and those types of foods next to me in the living room, and put stuff that I would NEED near by within reach. I would not want to live my whole life like this, and it means SO much that I can now get myself around the first floor enough now that I don't need things to be within arm's reach, but if it's what is needed so that you can be independent then do it.

If someone was always there to do things for me then I would have had a hard time pushing myself to do things on my own. It can be frustrating, but it is a great form of motivation. And I wouldn't ever just say leave her on her own for days, weeks, at a time so that she is abandoned...but do you ALWAYS need to be there every minute of the day? No...not unless there is some reason for that and the doctors feel that she cannot be left alone for medical reasons. But if it's merely a functional issue with the pain, then she needs to know that she CAN do things for herself. It will take time and hard work to expand those things into being totally self reliant, but baby steps.

Has she tried at home physical therapy where someone can work with her on how to make functional progress towards being able to take care of herself? I've heard of some therapists being able to work with patients on things like how to safely get themselves in and out of a bath tub or into and out of a chair. It can be very empowering to know there are ways to do things for yourself. Plus, and I don't know whether this applies to her, but it HURTS when people try to "help" me sometimes...like if they try to lift me or hold me up. Doing certain things on my own is often less painful than when people try to "help." You can control the motions and anticipate them.

Sorry I'm so long winded...but what it all boils down to really is being able to make a choice that you will not let RSD kill you. You can sit on the couch trying not to move and be in pain, or you can choose to live your life anyway despite the pain and works towards being able to do all the things you want. Either way you'll be in pain, but it's up to you to decide how to deal with that pain to get what you want. You can't give up on the hope for a pain free life, but more importantly you can't give up on life no matter what obstacles you are faced with. Well...you CAN but I really don't recommend it.

Good luck, I really hope that she is able to overcome any difficulties she is having. This is SUCH a difficult thing to go through.