Oh Kathy...I'm sorry to hear all of this. Keep fighting for yourself. Being your own advocate is the only way to get anything done.

I had a long run of bad luck with doctors including my GP who had been my doctor my entire life. Literally was the one who delivered me. But nothing was happening...nothing was getting done...and I was just bounced around from one doc to the next. Well...one appointment he told me I might just have to get used to being in a wheelchair. DONE...that was it. I got in the car, turned to my mom, and told her I was making an appointment with another doctor ASAP and I made the call on the way home in the car.

Things started to turn around for me at that point. Don't get me wrong...I still have RSD...it is still terrible...but I have reclaimed my life. Some might look at my choice to be off almost all meds except clonidine patches and Lidoderm patches as giving up but I haven't. Some might look at that and think that it can't be that bad if I'm not taking anything. But the bottom line is that the meds at their best helped a LITTLE...and that just wasn't worth all the side effects and the long term effects of the meds for me.

My new doctor got me to specialists to rule out a bunch of other stuff before we settled on it being RSD spread to my upper body. Then I got a wonderful at home physical therapist who quite literally saved my life and gave it back to me. Between the doctor who was willing to work WITH me and try new things and the physical therapist I ended up being very lucky. I use a walker now...but I'll take that over a wheelchair any day. BTW...not saying there's anything wrong with a wheelchair...you get whatever YOU need to take back your life and freedom...just that for me personally it was my motivation to keep pushing hard in physical therapy to say OUT of the wheelchair.

My doctor also worked with me to explore treatments like tDCS and small things like changing my diet. The approach we took once we realized the RSD had spread and was the culprit was to tackle the individual symptoms as well as making life changes to tackle the RSD. The pain...that is what it is and I have a good handle on the triggers and what I can do to reduce those as much as possible. So we made a list of the symptoms that were preventing me from living a "normal" life. The first ones were the dizziness, blurry vision, balance issues, lack of sleep, lack of endurance and strength, etc. The physical therapist and I worked on the physical things in therapy...the walking, endurance, and balance. My doctor and I worked on the others. Tried different medications until I brought her some research on the clonidine patches working for dizziness, blurry vision, etc. So we tried that and it worked.

She was also open to other things like tDCS which I feel was incredibly helpful in getting me to where I am now...especially with regards to sleeping better. The change was slow...took about 2 months of use of tDCS before I saw any change...but I slowly began to sleep longer without waking up. This was after a year of no more than 3 hours a night and rarely more than an hour together. It doesn't work for everyone...but this was huge for me and nothing else worked.

So just keep on fighting. Not every journey will look like mine (most won't...I'm pretty sure) but I had to make some tough choices along the way and face some hard truths. Once I accepted certain things I could start focusing on the things I COULD control as opposed to the things I couldn't. You cannot force the doctors to do ANYTHING...and some of them will do nothing. But there are always things in your control that you can fight for. It's hard when you have RSD because...quite frankly...it's exhausting to fight so hard for these things day after day when you already feel like garbage. But if you can do it...you will be happier in the end and hopefully get what you want.

Sorry...I do tend to go on and I apologize. Just...take care and keep fighting.