Hi Joe. I'm sorry that you have to go through all of this...this is an awful condition...but please do not give up on yourself yet.

About 5 years ago I was in such bad shape from the CRPS that I couldn't stand or walk at all. I was wheel chair bound and couldn't do anything for myself. This went on for months as I was passed from one doctor to the next to the next. The pain was awful...but worse than the pain was the toll this was taking on me mentally...the toll it took on my soul. I basically felt trapped in one room of the house...I was a lump on the couch and I was so miserable and in so much pain.

Finally...one of my doctors told me that I would probably just need to get used to living my life in a wheelchair. That was the moment...the one where everything started to change for me. I was so angry...I was 26 years old and I was not about to give up my chances at a normal life. That was the last time I saw that doctor...on the way home I called up another office and set up an appointment with a new PCP and everything changed from there.

Yes...I said a primary care physician. Originally I thought that I would basically get fresh eyes on things and maybe referrals to different doctors...but I actually finally found a doctor who wanted to really help me and we eventually got me back to walking (with a walker...but who cares) and back to working full time at a job where I am on my feet 9+ hours a day. A couple years later...I gave birth to a beautiful baby girl. I took my life back...so it can happen.

Now...unfortunately...the pain is still awful. I have never found any meds that help me much with the pain and the ones that did help a little had side effects that just weren't worth it for me. So when I saw this new doctor...I changed my focus. The pain was awful but as I said...the loss of function was destroying me inside...so THAT became my focus. We tackled one symptom after another to get me back to FUNCTIONING (you should have seen how excited I was the first day I was able to do the dishes while this was all going on...small victory but incredible feeling). We did at home PT where a physical therapist came to the house to work with me. Another wonderful woman who also was a big factor in changing my life. I needed way more time than the 40 sessions that insurance allows...so we started twice a week but after a month or so she dropped it down to once every 2 weeks and gave me the progression exercises to work on during those 2 weeks so that I kept making progress but got the TIME that I needed because it did take months and months to really get me back on my feet. Then...even after physical therapy was done it still took another few months to really build up my stamina so I could handle a full day of work. The walker was and is the only way I can handle being on my feet that long but it's a tool and it works for me (I have the kind with 4 wheels and seat so that if I need to sit at any point I can).

Anyway...the doctor and the physical therapist worked together to get me a TENS unit at home (which helped more than any meds) and to coordinate my treatment on that end. Then my doctor worked with me to tackle one thing at a time that was really preventing me from functioning. First...sleep...I was't getting any and that had me in terrible shape. Your body NEEDS rest and I wasn't getting more than 15 minutes at a time throughout the day adding up to maybe 2 hours over the course of an entire day. She got me on amitriptyline and that gave me 3 hours of consecutive sleep a night which was tons better. We got me on clonidine patches that helped me with the blurry vision and dizziness that I was having (I was a real mess). Then eventually when I heard about tDCS treatments, my doctor wrote a script for the machine so I could do treatments at home...which didn't help directly with the pain but I was able to sleep consistently 6-8 hours a night and get off the amitriptyline and my flare ups were less often and lasted shorter periods of time. I was able to get back to work and while life is still very hard because of this pain (and new things like my current rotator cuff injury after a fall off a ladder at work can throw things easily out of whack)...I am able to contribute, feel useful, and live a fairly normal life most of the time. The pain has just become one of those crummy facts of life but over time I have learned my limits, what causes flares, what activities to avoid, etc and it gets easier.

I don't mean to suggest that this particular treatment plan is right for you...only to give you hope that you CAN get back to a more normal life. It won't be fast, it won't be easy, but there IS hope. If you don't believe there is hope then you will never be able to take your life back....so please believe that there is and can be a light at the end of the tunnel. And...I know this is incredibly hard to hear not to mention accomplish when you have everything going on that you do...but try to keep the stress to a minimum as it make the CRPS pain worse. Stay focused on your treatment and recovery, enjoy whatever time you can with your family so you know what you are fighting for, and please please do not lose hope.

This forum is an excellent resource with many people who can not only give you support because we know what you are going through...but we can give you lots of ideas about treatments, things that help us out, etc that can really have a big impact on your life. I've learned so much from the people here and through their support and love have been able to accomplish what I have. None of us can do it alone.