Originally Posted by WellLovedMom

I just need to whine a little in a safe place, and maybe someone may have some feedback or suggestion (or feel like adding a bit 'whine themselves). I've had RSD (now renamed CRPS, which drives me nuts, as "newbie" nurses & docs give me that "I have no idea what RSD is" look until I remember to try and spit out the updated name. For those of us who live with brain fog, that is a LOT to ask!!!) I've been around the block with this lovely condition, being bedridden for several years, finally going through the "chronic pain program" who put me on Oramorph (after years of other meds that made me horribly sick to my tummy), then about 4 years after going ON the meds my RSD spread and I started the nerve blocks, and the docs insisted that I HAD to go off of pain medication, and "learn to live with the pain" if I wanted to continue to receive treatment of the pain blocks (I'd cut the meds DOWN with the blocks, but the pain was on a upwards swing). Needless to say, I became VERY depressed and frustrated, as many here have been to the pain level of a chronic 10 and being told that you need to just get more active, and stop the pain meds really ticked me off. Anyway, I told them to keep their @&*#^ pain blocks, and kept on the pain meds, living in misery.

WAIT! It gets worse!!! I developed Meniere's disease, am inner-ear condition that causes horrid, indescribable bouts of vertigo, where you spend hours to days laying on the floor next to the toilet, vomiting from unbearable nausea. This went on undiagnosed for FOUR years. Anyway, eventually, I was diagnosed, and I made the decision to go COLD TURKEY from the Oramorph, and warned the family then spent a couple of miserable weeks in my room (after RSD and the Meniere's, I was ready for dealing with bit of drug withdrawal). It wasn't fun, but I got through it, and started to use the "mind over body" tuning out the pain signals.

I actually got pretty good at it, and was able to push pain signals out of my mind, (with the help of Lyrica). I have NEVER been pain free, but I was doing pretty good. I even started walking up to 3-3 1/2 miles 3-5 days per week, and lost 75 pounds (down to a size 16 from a 24).

This past summer, the pain started screaming louder and louder, and I'm not sure what to do. I did start back with the spinal block, and the first one helped, but the second one only lasted 1 day. I often don't even realize that I'm in pain until I notice that I've become extremely irritable, and I've been dealing with "mystery" insomnia that I finally realized is that my pain level is so bad that I'm tossing and turning, kicking moaning, (and awake). I realize most people would have noticed their pain creeping up, but I was given a nasty lecture from the Kaiser Chronic Pain group "what else do you want us to do? You're on meds, and there is nothing else available to help" so I learned that tuning pain out was the ONLY way to survive and stay sane.

I've been mostly bedridden for a few months now. The nausea alone from the pain is tough. A few weeks ago, I pulled out an old bottle of Oramorph, only to find that it isn't helping, and I'm now dealing with the chronic pain AND med side effects. I also have degenerative arthritis in the knee, and I'm wondering if the deep aching/throbbing horrid pain when I stand on my leg are the RSD, or the arthritis.

Thanks for anyone who is listening, and any advice/suggestions would be greatly appreciated.