@faithwalker @jesfactsmon Hi Hank and Renee, First, Hank, you are just simply the best. You could be the secretary of Connect, being how well you keep track of everyone here. Thanks from the heart. Renee, my heart goes out to you. Yes, I do remember writing to you in the past, and I am here to perhaps help you. Notice the perhaps, because with pain, you really just never know. First, Calmare (Scrambler) therapy must be mentioned. It is a device that brings electricity to where you hurt and there is good research about it with CRPS patients. I had it done in 10 sessions, 45 minutes per session. It alleviated pain quite a bit for about 3 weeks, and then stopped helping. I repeated these sessions, and it did not help at all. I am still telling you because I have met 2 CRPS patients that it helped very much. I also have the DRG stimulator for about 3 months now, and it barely does anything to help at all. Seemed I had about a 50% relief of pain during the trial, but it just is not working with repeated adjustments, programs, etc. Next to see if my wires have migrated. Any insights about the DRG that you have would help me much, just to know what you think may have gone wrong. Lastly, most importantly, is Kratom, because Kratom is the only good thing I know of to take for severe nerve pain. However, it is not FDA approved, and the moderators would rather I speak of it in private messages here. Please, let me tell you about it if you are interested. Message me at LoriRenee1 I am here to help, if I can. Lori
I do remember talking to you Lori! I have a suggestion about your DRG. I turned mine off (involuntarily, I put my cell phone too close to it and it shut off) for 5 days or longer. If it truly isn’t relieving any pain, you’ll know it. If it is helping AT ALL, you’ll find that out too.
Like you, I have had mine reprogrammed over and over since it was implanted and never have reached the level of relief at the trial. It has not even given me the level of relief I would say I could actually “feel” or rank.
I was actually thinking of getting my paddle leads changed out until I ran my accidental shut-off experiment. It was at that time I discovered the Stimulator does give me relief- about 20-30%. It is nothing compared to the trial but better than nothing and enough to not risk another surgery on my back.
I’ve has too many surgeries on my entire body from my eyes, ears, and nose to almost every large joint and my GI tract. I can’t have anymore elective surgeries without risking my CRPS to spread to more areas. It’s already spread too far already.
My overall pain relief goal is 50-60% and I’m close to achieving it. I’m right at 40% on a good day with the decrease to Percocet. Even on Dilaudid I only reached maybe 60 or 65% but I slept most of the day away.
Not exactly a good existence.
But I never have and still don’t know what to expect from this disease.