Lessa, I posted before. But wanted to let you know again, it is ok to talk about your CRPS issues, just don't make it all you talk about, that's when you become "that person" you described. Letting yourself grieve, at least to me and the one person I actually associate with in person with CRPS has helped us tremendously. It's like letting go of a huge burden. You may need to grieve alone, you may have help, you may need counseling help to get through this, all of those are completely normal!!! Any "normal" person would be incredibly upset by realizing that they can't do a lot of things they used to be able to do and their life is altered suddenly by this thing.... I am so glad you explained to your wife about the grieving process and she was receptive to that. It is sooooo very hard for people that don't experience all our challenges and pain daily to get or understand a tiny portion of it. Like I said in an earlier post, I don't think you have to go the complete silence route, as you need to vent. Just find the appropriate audience to do so. Like I said before, I avoided support groups, etc., like the plague before as they were very negative when I was diagnosed (2004) or maybe I just didn't find the right place. I feel there are many kind and knowledgeable people here that really just want to help. I guess that is where I am at right now. I am having a very hard setback and other (new) medical issues so I would just like a distraction now in helping others so I don't think about myself. Please don't feel sorry or anything for me, I just want to help you all. Take care and let yourself grieve your losses due to CRPS (don't focus on them), just try and let them go and focus on the good and great things you can still do!! Also, always know now, you can be of tremendous help to others that are suffering as you have been there and have the awareness to try and take care of yourself. Sorry for the long reply. I am currently trying to focus on anything but myself

Hi,
I've been battling this for 20+ years. When it first spread to my legs and yes they turned many and varied colors, swelled to the point of the skin splitting. Wound up in a wheelchair for 2 years. Rarely saw my bedroom (second floor) and forget the 3rd floor! Every couple of days I'd navigate up the stairs to shower. Lots of tears getting there!

Participated in the use of subQ Lidocaine for pain control. It brought the pain down to a 5. The physical therapists associated with my pain doc, kept me moving while in the wheels. The PT became much more bearable with the lidocaine. That was 16 years ago! My legs are not doing well..but old age has snuck up alongside the RSD. I use a cane and when we travel I'll rent a scooter. Wonderful way to see Disney!
You can use the "assistive" devices (WC, canes etc) as needed. It keeps me sane.

After all these years the rage comes and goes. It's lessened over time,but then I now get angry at the aging process (LOL)

@Megs - Thank you again. I'm working on not being that person, and actually had a long conversation with my best friend about random stuff (including her schooling) it was nice and refreshing! I currently take trazodone for sleep and it still allows REM, I wake up and I've found its mostly due to pain, since I've figured it out, I just change some of my pain meds around and it seems to be working better, thank goodness!

As for any natural supplements, I read up on them through the web on trusted medical sites and will even ask my doctor before taking. I don't want any silly reactions or something. Thankfully I don't want children, so that's not a worry.

@JV - I know anger has major issues. I'm waiting to hear back from the pain center. My new GP is going to prod them along if we don't hear anything from them in the next couple of weeks, seeing as he feels that its unfair to me (that's probably not the word for it) to wait.

UPDATE so today the OT came in, and she ordered a framed walker for transfering (to the car, to the toilet, etc etc), a shower stool so I can bathe more often, a commode so I don't have to go upstairs to pee, and if the red cross (where i can get this stuff for free) has a good wheel chair, a wheelchair to borrow until I get mine within the next few weeks. Otherwise I continue renting this wheelchair.

I'm so relieved that she did all this, and she's going to continue working with me, and the dealer for my chair until I have the perfect chair for me. =D

Lessa,

TKY for the update.

These new aids will vastly improve your quality of life. I wish that every person who has difficulty showering would be advised to acquire a shower chair asap. I lived without one for almost a year, shear torture-denial.

If you half fill the commode bucket with water it will reduce odor and staining. At one time Amazon sold an odor reducing, charcoal filter which could be stuck to the commode lid. Something like this:
http://www.amazon.com/Activated-Char...odor+absorbers

Also, a plastic bag is a good item to use for transferring. Another item I like is a handle that attaches to the cahttp://www.amazon.com/Stander-HandyBar-Automotive-Standing-Emergency/dp/B000GUKKMW/ref=sr_1_1?s=baby-products&ie=UTF8&qid=1448017991&sr=8-1&keywords=Door+handle+car+handicappedr frame.I originally bought mine to help my mother
get in and out of cars-now I use it.

Thank you! We are actually looking to probably trade our car in for a van or something with more space in the back. When we do that, we're going to be putting adaptations in. My wife helps me transfer, but this item may help.

We are going to put water in the commode for sure, I'll look into the odor reducer though! The only reason I'm able to get a shower bench is because my OT demanded I have one (and I agree), because otherwise I barely have showers, and just spot bath. Plus I'm loaning all this stuff for free =) When we move we are going to buy this stuff. Which may take months.