Hi WellLovedMom,
You have reason to share your pain. We understand and are here for you. I was just thinking maybe the Oramorph was 'out of date' Some meds loose their strength when they are 'out of date' Just thought you might check the bottle.
I've had RSD for 15 years, along with fibro. Trigeminal Neuralgia & PTSD
Besides full body for the last 6 years, it is internal and now I'm in the process of having sleep apnea checked out. I, personally, find so much comfort and kindess here on Neurotalk. Please stay with us and we will do our best to support you. There are so many knowledgable friend here, and they are so willing to share their knowledge with us.
I used to be involved in sports, so I enjoy watching the major tennis matches, the olympics, both summer and winter. I've never ice skated, but that is my favorite. My daughter and I used to play tennis about 5 days a week and enjoyed going to some tournaments, so watching brings back some good memories. I always feel good watching sports rather than sorry for my condition of RSD. I do feel bad about my weight gain so it motivates me to keep and reach my goal.
Music is also something that lifts me up. When I get out of the house, its
such a good feeling. I do have a window of time in the afternoon that I'm able to drive. My Dr. gave me the number of hours I need to wait after taking certain meds.
I also have a home based business of marketing dark healthy chocolate-with a cold pressed patent. I enjoy that with no pressure of appointments etc. I have a laptop and printer by my bed.
Scented candles and natural essence oils I enjoy. A friend bought me a machine that dispenses natural oils in the air. Lavender is my favorite- a calming effect. Another friend bought me a wax machine to brush on my hands and feet. It's theraputic and easy to use.
Epsom Salt Bathes are something many on here enjoy. I enjoy reading, and have done a lot of personal growth work. After my parents died, i did over 2 years of counseling, which has helped me when I got RSD following surgery. The last 6 years I've been seeing a psychiatrist once a month. He is also a neurologist familiar with RSD and a pharmacologist. A few months ago he put me on a 200 person trial study for a med for fibro that also had a side effect of a sleeping pill. I was having a terrible time at night sleeping, but am now sleeping 10 hours at night. The restorative sleep has lessened my pain. Was able to go down on pain meds.
I've been in a rollercoaster of up and down pain. It seems like we are going to have that with weather changes and personal stresses. It sounds like you have had this for a long time. May I ask how you got RSD? Like I mentioned, mine followed surgery with a frozen shoulder, but didn't get diagnosed for 4 years. Our only child, a daughter, was 15 at the time. I did have 2 remissions--of course I didn't know they were remissions-I just thought all the pt and massage therapy fixed my shoulder. It took 100 of each. And then the therapist told me it might go to the other shoulder. And after a year of good health, it did move to the other shoulder.
Hope something we all have said can be of some physical and emotional comfort!!!!! One of your new friends, loretta with big soft hugs
