It’s nice to meet you too Gabbycakes, and thank you for your reply.

After typing all this below I am about to click send and notice that it’s kind of long. Hope I don’t bore you to death with all the details….

The doc who did my original surgery was an orthopedic, big mistake in my opinion. If I had it to do over, I would have sought out a neurologist.

The Ortho is the doc who suggested it was rsd when I wasn’t getting better. He referred me to a PM doc. Within a years’ time I had to have knee surgery on the same leg with the rsd. The thigh muscle today is maybe 80% of pre-surgery in density. And the knee is still not great. By now I am on all kinds of pain killers, pain patches, Neurontin, etc. He wanted to do blocks, and honestly it was like I had become hyper sensitive to pain, and the thought of one more poke or prod anywhere in my spinal area or anywhere else was just unfathomable to me.

I would average at least one yearly visit to the ER to get the pain under control. There was a long period of denial for me. I think I was still holding onto the idea that I would get better; it’s just going to take longer than I thought. I started to back off the meds. Eventually I was able to deal with higher levels of pain, and kept the big gun drugs for breakthrough pain.

So… yeah, I’m over the denial part now and have come to accept that it’s not getting better, in fact, now I feel like we’re headed in the wrong direction… backwards. I feel like its regressing and have been actively looking at what my options are. Maybe it’s just me but the blocks just seem so limited in relief for the folks who have tried it, and I just don’t read enough positive results that make me okay with having that procedure.

The ketamine makes sense to me. I equate the brain to a PC hard drive that needs to be rebooted. From what I understand, insurance won’t cover those treatments. Has that been your experience?

I try and stay as physical as possible, really I do. At least once or twice a week I will push myself, but I must mentally prepare for the payment in degrees of pain. I mean a trip to the grocery store and that’s it. I’m done for after that. Lucky to push through to get them put away. I used to love to work in my yard, and now I will hardly be able to walk after an hour or so of that. I used to go out on shoots at work, and sometime would double as videographer. This is hours of being on your feet, and lugging gear, and a year and a half ago I stopped going on shoots unless absolutely necessary, and I no longer carry gear when I do. So the idea of a daily workout would require a lot more medication just to get through it, and maybe that is what I need to do.

Half of my calf and most of my foot are completely numb and have been since surgery. This is the original leg/foot that I woke up with rsd. When I’m active it’s like the calf muscle seems confused and just wants to contract, spasm, and incredible pain for sometimes days depending on how much I used it. The knee swells, and gets stiff…. Again, I can’t figure out, other than maybe water, how I can exercise regularly. Again, maybe I need to make more effort to do this too.

Thanks again Gabbycakes for reading and responding, and great to hear that you’re doing so much better. Good to know there is hope!

V-Rae