Hi tmullen and welcome to NT.
My name is loretta and I live in Phoenix, AZ. We get some of our 'weather' from your area. Our temp. dropped 20 degrees in one day this week. Most of us get flares when there is a weather change. I know I've been in full body ache. Are you losing sleep? Are you on any anti-depressants? anti-anxiety meds? sleep meds?
I've had RSD 14 years and is full body now and internal. I am not sure someone who hasn't experienced RSD or flares can understand the pain and emotional lows we experience. I know my family tries and does pretty well. They have done their own research and gone with me to DR.
I'm grateful for all that they do and grateful for the days I can do a little something around the house or do something socially with them.
There are several things that I do to calm my system down. Journaling, listening to my favorite music, scented candles, essential oils like lavender in bath or in a candle, meditation, prayer, visualization, reading, talking with my friends, writing cards to friends, typing here on neurtotalk to encourage others and gain knowledge.
When I was diagnosed full body about 5-6 years ago, I found a psychiatrist who has helped immensely emotionally, accept the losses in my life, and look for the positive things I can do. He is also a neurologist and pharmacologist. Getting the the 'right' meds has made a huge difference is how I feel physically and mentally. I used to have dailey and nightly electric jolts, jerks, spasms. They were terrible, raise my head right off the pillow as the electric jolts went thru my body and brain. My Dr. put me on 3200 mg of neurotin and hated it and the weight gain, but the electric jolts stopped and about a year ago, I asked to go off neurotin. Gradually went off the med and the electric shocks didn't come back. He put me on lorazepam and that calmed my sympathetic nervous system down. I wasn't sleeping at night till about 5-6 a.m. He was in the middle of a 200 person study of seroquel for fibromyalgia, which I also have. I went off ambien and 300 mg. seroquel and started sleeping 10 hrs a night. The change was enormous- until I got the flu. I'm on my 2nd round of antibiotics now. When not in a flare, I was able to cut in half, the vicodin and lorazepam.
I hate the weight gain I had, but am gradually going down. This is such a tough disorder to have. Our losses are huge. Counseling has helped me so much. In the 80's I went thru 2 plus years of counseling following the death of my parents. RSD reminds me of grief & loss. A lot of us are fighting it before we even know what it is. For me it was 4 years. How about you? Six years is a long time. I'm so glad we have found Neurotalk. You deserve commendation for dealing with this 6 years. Crying in natural and a release of emotions. I think we all have periods of down time.
I cared for both my parents as they were dying. Mom,46, of cancer and Dad of heart disease-7 1/2 years later at 59. It was a mistake to not grieve their loss and hold on to anger. Going thru grief and come to acceptance, gives us peace in our heart, no matter what the external circumstances.
I read about 50 books, along with group support, along with private counseling. One of my favorite books is "You Can't Afford the Luxury Of A Negative Thought " by Peter McWilliams. Another favorite is" The Language of Letting Go" One of my favorite Books of the Bible is Job' that explains Why God allows suffering and the Book of James that shows the blessings of staying faithful despite Trials.
Please know we understand how difficult it is to live day by day with such pain. I feel like yourself, very grateful to have found this forum of such kind, compassionate friends who'know' what RSD is like, no matter if it is one limb or all four- Take care, your friend, loretta soft hugs