Originally Posted by catra121

I have a similar problem in the sense that I've tried a lot of things and they just didn't help me enough to be worth the side effects (and several caused a bad case of serotonin syndrome)...so now I don't take anything. Lidoderm Patches I found to be the most helpful and stayed on those until I ran out of them. I stopped seeing a pain management doctor because they didn't have anything to offer me anymore. I didn't want to take pills and I didn't want any more procedures (experienced spread after a LSB). At the time all of this happened I was in a wheel chair and couldn't stand or walk at all.

So I found a new doctor and went in with a clear list of my goals...which were essentially to get the FUNCTION back and return to as normal a life as possible including my full time job. She listened to me and we worked together, tackling the symptoms that were preventing FUNCTION one at a time until I was where I needed to be. I went through months of at home physical therapy, I got a portable/wearable TENS unit to help with the flare ups in my ankle and allow me to walk with it on, take hot baths with Epsom salts, started tDCS treatment which helped with my balance, reduced flare ups, and led to better sleep cycles. This doctor was not an RSD specialist...she was a general practitioner who just listened to what my goals were and helped me achieve them. I was very lucky to find her.

So my advice I guess is to go in with a very clear set of goals. Eliminating my PAIN was not one of my goals...because focusing on the elimination of pain left me going in circles and never getting better in terms of function. I keep moving, and having that function does keep the pain at a manageable level...so getting the FUNCTION back was the key first step for me. We were also dealing with other symptoms besides my inability to walk...like blurry vision, dizziness, etc...all caused by RSD. We had to get those under control before I could even THINK about driving...and returning to work. So we just tackled my goal list item by item and got me to where I needed to be.

I think if you go in to the doctor with a very clear idea of what you want out of the relationship...that is the first step. Make it clean what you DO want and what you DON'T want. Your goals will likely be very different from mine...but I don't think that will matter. I always went in with things written down so I didn't forget. I really owned my own progress with all of this...the doctor was just there to assist me where she could medically. I also did/do a lot of things on my own to reduce symptoms...things like desensitization therapy, changing to an anti-inflammatory diet, hot baths with Epsom salts, avoiding triggers or doing my best to reduce their impact (wearing gloves, scarf, etc to protect from cool air, air movements, etc).

It takes a lot of work on your end but you sound like the type who is not only up for it...but doing a lot of it already.

I'm back to functioning at a high level and have been back at work full time (in retail) for several years now. I do need to use a walker...but better that than a wheel chair. I'm not letting this horrible condition stop me from living my life and doing the things I love. It can be done and the big key for me (other than my own stubbornness) was finding a doctor who was willing and able to help me achieve MY goals...not just going through the motions they always do or trying to force treatments on me that I didn't want (as those sorts of doctors will not be able to help you).

I hope that you have found the right doctor...and until then just keep moving and doing all the little things that help you. The little things often add up to enough to make things bearable...there's no one thing that help my pain a lot...but just a lot of little things that I do to get me through the day. Staying active helps me more than anything...not just the movement but actually DOING things because it helps take my mind off the pain (at least until the pain creeps up to those 8-10 levels when nothing really lets you ignore it).

Take care and good luck.