Hi Ada,
I just joined this board recently. I have had RSD for 10 years. I now have it full body, including the left trigeminal nerve. The pain is bad at the temple and have numbness on the left side down my jaw line over to the left part of lips. my lips are noticble when I use lip liner, the left half of the lower lip is drawn inward. The pain comes and goes. I've read it's rare to have it on both sides. I've read one of the sites, that an attorney had surgery on the trigeminal nerve and regretted it big time. I've read that if a person doesn't get help in the first 6 months, RSD pretty much travels on it's own-different for each individual. I'm very sorry you have it-how long? I too have bad headaches. also have bad pain in neck. I have a wonderful Dr. I see once a month. He manages my meds. mental health, etc. He has degrees in Neurology, Pharmacology, and is a Phschiatrist. I'm on Vicodin, Neuroton, although we are going to try and switch over to Lyrica. Many have switched over to this new drug, many get better relief from nerve pain. I'm on two blood pressure meds (double dose )
two anti-depressants (double dose) anti-depressants help with nerve pain.
lorazepam-anti-anxiety pill to help nerve pain for getting worse,and ambien CR for sleep. RSD affects the Limbic part of your brain. The Limbic part of your brain plays a part in short-term memory- all of us have short-term memory loss. Do you have complete membory loss? Limbic system affects decision making, emotions, and I forget what else. How long have you had RSD? What started it? Mine started with breast surgery-left side and benign.
Immediately following the surgery, left arm swelled twice the size, followed by frozen shoulder-about 100 pt treatments. travelled to right shoulder then right had frozen. had therapy, but it is permanently frozen to a claw. Now in right hand and both feet, legs. For me swimming is the best exercise I can do. We live in Scottsdale, AZ and have a pool. I also belong to a club with heated pool. It's important for the water to be warm at least 86-87 degrees.
I exercise daily-light as I'm very tired and in pain most of the time. I force myself out of bed each day. I'm 59. One daughter-married. She is 27 now.
Distraction Therapy is good. I just put a CD player in my (room) listening to music is such a mood lifter. just bought a 8 pack of 50's 60's music/ funny DVD's are good. Reading uplifting books and magazines. It's difficult dealing with 24/7 pain. We have an RSD support group here in Phoenix, actually two locations. And I have a couple of good friends with the monster I see or talk to every week. I preventative measures for dental work. I need to sign off now. Please write me, how long have you been dealing with this, what kind of support do you have. my best to you, Sincerely, loretta