i'm been in a horrible flare the last few days, yesterday is was my back and knees, and now it's my right leg. i'm so tired of going to all these different docotrs and it's the same ole' same ole'. i feel like i've been going around in circles for the last six years. i've been lashing out at everybody that takes care of me, and i've just crying and crying. i know they try to understand but they can't grasp how much pain a flare really is. i could barley get up today i was so weak, and so tired. i feel at the end of my rope. and i know i need to stay " strong and positve" and believe i will get better. it's just so so hard sometimes. and i know you guys can truly understand what i mean when i say that.
hope this finds everybody doing well

I just really can't believe these drs, in this day and age a person should be able to get decent pain control.
It seems like most drs are getting afraid to rx meds for pain control and if they won't do it they should send you to one that knows about pain control and will help a person.

and if not meds at least help you to find & try some of the other modalities - to see if they might help.

There are a few things you can try like hypnosis , meditation, de stressing
there is online info or books, CDs in most libraries,
also nutrition & supplements might help

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

I love the books of Job & James as well. My Bible is very well worn in those two areas. Thanks for the post.

Jo Mar and Loretta have some very good suggestions.

Unfortunately doctors just don't have the magic cure we need. There are lots of things we must consider when managing our pain from day to day, even moment to moment.

I was recently reminded by my doctor that I have TENS machine that I haven't used for a while. He suggested I try to close the pain gate using that along with a few other non pharmaceutical options.

Pain levels vary from time to time throughout each day. The Gate Control Theory of Pain (Melzack and Wall) does much to explain why this happens. The theory uses the idea of a gate, which can be open to allow pain messages through, or shut to stop pain messages being passed to the brain. The gate also opens and closes in response to messages sent from the brain.

Activities That Can Open the Pain Gate and Increase Pain
Overdoing activities
Depression
Poor Posture
Indecision
Poor Diet
Stress
Tension
Tiredness
Anxiety
Concentrating on the pain
Fear
Small quantities of stimulants, such as tea, coffee and alcohol


Activities That Can Close the Pain Gate and Reduce Pain
Pacing your activities
Feeling joyful
Good posture
Being enthusiastic
Rubbing the area that hurts
Hypnosis
Distracting your attention from the pain
Exercise
Massage
Relaxation
TENS machines
Visualisation
Having a positive attitude
Meditation
Laughing (have you heard of Laughing Yoga?)
Even certain foods are said to have the potential to reduce pain

I know many of these are not easy to even think of in the thick of a major flair but even something as small as adjusting your posture can help. Baby steps are OK.

Please don't give up, stay " strong and positive" and believe you will get better.

MsL