Hey all,

Been searching through older forums to find answers to the many unsolved questions that roll through my brain. I have figured out that my CRPS is now starting to spread quicker than I had hoped, or even thought of. The pain is not under control and I'm waiting to hear about going to the Pain Clinic and seeing my first and new Pain Doctor. Its probably going to be a couple of months and by that time I'll be surely past 6 months or more.

The pain is not controlled, the Lyrica hasn't really been helping so I knocked it off it just makes me drowsy and more grumpy...Because I'm cantankerous when I'm sleepy. I take the nortriptyline, because it does somewhat help...Or so I keep telling myself, and plus once I get to sleep I don't wake up as much. But, getting to sleep? Almost impossible. Once I get there I'm gone for almost 12 hours. I have insomnia and regularly take Trazodone for it (off label use). The trazodone usually just keeps me asleep for 6-9 hours, which is more than my natural 2-4. I'm happy with it.

Walking as been...just a nightmare. As some of you may have read I live in a two story place. I've been pushing myself to walk, so I don't stiffen up more. This painful endevour up and down the stairs makes all my symptoms so much worse, and it usually takes hour for it to calm down again...Just in time for me to have to pee again and repeat it all! We are still trying to work out how to pay for a wheelchair, as I'm in no position to walk prolonged periods of time, such as grocery shopping, doctors visits, or anywhere that is uneven and will cause me to lose balance. Since what little I had of grace has SO left me.

I'm wondering, has any of you who has ended up having to use a wheelchair, come back from that? Start walking again, etc? What can I reasonably request my GP to help the treatment of my pain until I can see the Pain Doctor. Percocets, Lyrica, Gabapentin, Amatriptyline all don't work. Nor does tylenol of any strength, or ibuprofien...Though I suppose this wouldn't be considered the most painful condition to date, if it could just be treated with some tylenol and advil now would it?

My right ankle never really swells, since it resides at a temperature that reminds me of the ice I put in my water, but my left ankle swells to the size of a balloon, and I take naproxen to combat it when I notice its particularly bad. Since I know this can be hard on your stomach I try not to do too much. Also since I have no gallbladder, I try not to damage my liver too much, but pain is pain!

I am going to look into PT when I see the pain specialist, because I want his advice on what he would like me to work on.

So here are my questions:

Walking after having to use a chair?
What pain meds are reasonable to ask your GP to explore with you?
Sleeping with this friggin disease, is it possible?
What is a reasonable amount to expect pain levels to get to with treatment? 4? 5? Currently am at a steady 10+
How fast has your CRPS spread?
My right foot has taken a darker turn, and looks more blackish (not super super dark, more like I ran in some dirt) and blue tone, I am going to bring this up to my doctor, but so far no one has cared. Should I be worried about gangrene? Or is gangrene something that happens to certain cases?
How to you tell potential employers about your CRPS? Especially when you're in a chair?
Am I just crazy and this is a horrible nightmare?
Is rage something that is common? Just the other day I was SO annoyed by someone talking through my headset I threw it because her voice and perky glass half full attitude literally made me want to yell at her to be quiet, that one day life just becomes hell because you wake up with this horrible uncureable disease (even though logically its not her fault, and bravo for being glass half full!)?


Thanks

Lessa