Hi, sorry you're dealing with this thing too

Yes, everyone is hugely different, and most docs haven't a clue. There is no definitive treatment plan for CRPS other than physio to keep moving, and pain control. Nerve meds can be helpful, but equally they don't always work, or work for long... I see a pain management specialist, an occupational therapist and physio, and my GP if I have to lol. He has not much knowledge of CRPS.

My CRPS started in my knee, but is now in my whole left leg to my buttock, and in both feet. In the last few months it has spread to my left arm and left side of my back. Like some g*t drew a line down the middle of me and zapped the left...

I started on amitriptyline which helped within a few days. A few months on it wasn't working, I was switched to Lyrica (pregabelin) and that was ok for about 12 months before it wasn't working so well, and I was having horrible electric shock pains, so I was taken off that. Then to Gabapentin for last 6 months or so. I had codeine or tramadol for pain as needed, but found they just dont touch the crps pain. Nasty gastric/liver issues after a while with two episodes of sickness where I couldn't take anything for a few days. Realised that not taking full dose hadn't affected pain levels so I've gradually come off, and am now med free apart from lidocaine patches that I use occasionally.

I'm not saying everyone should come off their meds, or that many people don't need them, but I think docs throw all sorts at CRPS and see what sticks. The most useful things are physio and pain control, but if the pain meds don't work then I question how useful it is to keep putting those toxins in - some of the side effects have been worse than the CRPS symptoms! I feel more like myself again now, don't have dry mouth and eyes, gastric issues, weight gain all the time, skin and hair are slightly less crappy as well lol. I have pain, but then I did before when I was on the meds....

All you can do is read and research and make some choices for yourself. You have to push to get the treatment you want, but my pain doc likes that I have educated myself and have reasons for the things I ask for. I was far too trusting in the docs in the early days, but so many of them know less than me about this, and some advice/treatment I was given by a few was laughable/terrifying. Listen to your body, keep as active and busy as you can, keep your mind stimulated and live as best you can with this thing. Depression is a big factor in CRPS, don't underestimate what CRPS can do in your head! If you feel blue a lot, cry too often, feel hopeless etc, push to see a psychologist, talking it through really does help.

Good luck

Bram.