Hi Kelly,

I am so sorry you had that bad flare. I know it was scary and thankfully your cousins were there! I also have full body-12 years now. About 5 years ago I woke up and felt strange, stumbling to the bathroom, running into the door and wall. So sooner than got in there and passed out, knew I was passing out but couldn't do anything about it. My husband was home in his office upstairs. When I woke up, I couldn't get up so just crawled on my stomach to the door and beat my hand on the door as loud as I could and called for him. He had heard me get up. I asked him to call 911, had to ask him 4-5 times, he was in shock. I passed out again. The Emt's couldn't get a pulse and told my husband he thought I was dead. I had lost my bladder and colon. They finally got a pulse somewhere else. BP was 60/40 I was unconscience for at least a hour or more. They gave me oxygen and pretty much don't remember anything until in ER. The nurse had a relative with RSD, which was nice and spent 4 days in ICU lots of tests. One of my Drs. was experienced with RSD.

I only take showers or a bath when my husband or daughter arehome. My Dr. has said not to get the water too warm- it weakens me and makes me feel light headed. I was my hair separately with a pull out shower-sprayer as he said it's important not to keep your head down too long. That lowers your blood pressure and can cause you to pass out. RSD is an automic disorder, which means it affects internal organs that are involuntary, like your heart rate, circulation, blood pressure, I have swollowening difficulties at times and voice changes. The sympathetic nervous system is the fight or flight response. So we have high blood pressure, burning spells, sweating, and then the para-sympathetic nervous system tries to balance us out and goes the opposite, low blood pressure, ice cold spells to the bone. I'm on two different blood pressure meds. Only have a low bp about once every couple months. You can get a bp kit at costco or wallmart for about $20.

There is a medical alert that you can put around your neck for the shower, and it goes directly to the ambulance service- Maybe you could call an ambulance service and ask about it or aarp ( I'm sure you are not that age( smiling) If you can't afford the monthly cost, maybe there is an agency that will cover it for you. Those emt's sound so nice, they might know where to start. Also I'm going to get a plastic stool for my shower to sit on, as a shower is very tiring for me. I think wall-mart has them. I always take a portable phone with me in the bathroom now. That kind of trauma, doesn't easily go away. I cracked my head on the tile. I hope your face is Ok. Look for lumps under your skin, they are tender and don't go away, but aren't really visible to others.

The flu or a cold can send you into a flare. They really knock you down. Even before that spell, and that's the only one I've had, I had spasms, electric jolts thru my brain, shocks, had my left hand locked upon. Got part use back thru therapy. Both shoulders have been completely froze up and got them unlock thru massage therapy and pt. About a 100 treatments each for the initial limb, following surgery. Have had toes start to curl and Dr. gave me exercises to do and they completely touch the floor again. So PLEASE, even a little exercise helps. I have 1lb. weights. and sqeezie balls, for strengthening hands. I have full use of both arms and full use of right hand and about 1/2 use of left hand, but can type, cut my food, peel potatoes, etc. If you have a bath tub, it's a could place to so some stretching exercising in warm water, not too hot.

My Dr. a neurologist, psychiatrist, pharmacologist, gradually put me on neurotin 3200 mg and all spasms, jolts, jerks, dailey and nightly all stopped. This is my first week off the med. and no symptoms. I gained a lot of weight and that was so depressing. Of course, I'll go back on if I start getting the dailey spasms, etc. back. Please take care, and pm if you have any questions. Flares are bad, and especially if you live alone. With you falling, do you feel comfortable having someone check in on you by phone? at least till this flare passes. We all care about you and hope it passes soon. Your fellow RSD friend,Loretta Jewell