I think we've all been there...it's really hard not to have been with this condition.

For me...I feel very lucky to be surrounded by so many supportive people. Especially my boyfriend (who I live with) and his family who are also close. Not that my family isn't/wasn't supportive and helpful...but they live in another state so that day to day support is a little harder long distance. The best thing for me was that THEY never questioned what I was going through, never made me feel bad or like I was a burden, and at the same time never made me feel broken. They kept me focused on getting better and finding answers...and it kept my head in the right place.

My dad did give me the best advice that helped me get through the roughest moments. That advice was, "Focus on the things you CAN control and don't worry about the things you can't." Much easier said than done...but if you can manage it you would be amazed at how much it can change how you think about things. There's always something in our control...even when it can feel like there isn't. Recently I was in the hospital and the nurses banged the bed into the wall causing a REALLY bad flare up and I knew I had to leave the hospital to take care of the flare up because they were not equipped to do it at the hospital. But my doctor said she wouldn't release me. I felt helpless...but then I ran through the options that I had IN my control. She wouldn't let me leave but I didn't have to let them do anything that would make my flare up worse so I refused any additional blood work, the taking of any vitals, I pled my case to the new nurse who came on at shift change...and she was able to convince the doctor to let me go. There isn't always much in our control...especially when it comes to doctors and treatments and timelines...but there's always SOMETHING...and that gives me a sense of control over the situation (no matter how small it is).

I've had some major setbacks throughout the years with my RSD...the worst ones being when I put all my hopes in a particular treatment or had expectations that a certain doctor would have the answers...only to have nothing go the way it was supposed to and all my hopes dashed. You can't help by feel crushed and defeated when that happens. One particularly bad disappointment...my boyfriend helped me get up to the bedroom (I had been spending all my time in the living room to avoid stairs...including sleeping) so I could sit in the dark, cry, and be miserable...and he told me I got ONE DAY...and then we needed to figure out what the next step was. So I took my one day and by the end of the day I had a few ideas in my head about what my next move would be.

I'm also very stubborn and if you want to get me focused and determined...make me angry. The worst doctor I had through all of this was actually a small blessing...because he made me SO angry when he told me I would just have to get used to a life in a wheelchair. HECK NO! That was unacceptable when I hadn't gone through anywhere near all the treatment options and it set me off...and I ended up calling and making an appointment with the best doctor I experienced throughout this whole thing in the car on the way home from that appointment.

My biggest advice to you based on my own experience...is figure out what you want/need from your treatments with your doctors and make sure you all have clear GOALS for your treatment. It can't just be, "Make the pain go away...I feel awful." Let's face it...remission is definitely something we all want but if you want advice on how to have a better quality of life now...you have to look for realistic, specific goals that will allow you to go out and live your life. For me...I had a LOT of different symptoms that were preventing me from functioning. I couldn't stand or walk at all, had blurry/double vision, TERRIBLE balance, wasn't sleeping, experienced spread to almost my entire body and couldn't wear normal clothes...and a whole list of other things but these were the big issues that were keeping me from functioning. So...I sat down with my new doctor and we focused on these issues specifically and tackled them all one at a time. Once we got these things under control...I was able to live a more normal life...a life that gives me joy and gives me something other than the pain to look forward to every day. I still have high pain levels...lowest these days is a 6-7 and it gets up to an 8-9 every day by the end of the day...but it is MUCH easier to deal with the pain when you have other things going on vs. just sitting there day in day out in pain with nothing else to focus on. I'm off all pain meds (as the side effects were just not worth the little relief they gave me)...but I use a walker (I'm only 30 and have been using it since I was 27...so a little odd), a TENS unit, an ultrasound heat therapy machine, heating patches, tDCS unit, and hot baths with Epsom salts to control the pain. I went through desensitization therapy so I could wear normal clothes again. I have taken a lot of time to figure out what my pain triggers are and do what I can to avoid those things or minimize their impact on me. I changed my diet to follow the Four F's diet (I cheat a little but stick primarily to this and avoid the bad things...it does help with the pain a little).

You cannot focus on the things you used to be able to do...I have had to figure out new ways to do lots of things because I can't do things the way I used to...but I can still do them in different ways and that is what I focus on. And I'm still learning every day...learning what I CAN do and what I CAN'T...but it's worth all the effort.

My life will never be the same as it was before...but I've reached a point where I am happy and living as normal a life as possible. I'm not going to let RSD hold me back...I am NOT my RSD.

I hope that some of that helps...it's just my own personal experiences and what has helped ME. I know we are all different and handle things differently...do not beat yourself up for feeling the way you do...we've all been there and many of us are still there. You just have to find within yourself what will give you the power to cope with and deal with all this.

Best of luck...take care...and keep us posted on how you are doing. Hugs.