6 years ago I began to have this burning pain from my lower back all the way down to my right foot. First visit was to my obgyn, vaginal pain also and have had so many surgeries, I was warned that if I started having pain that scar tissues could be the problem and that would mean they would have to go back in and clean it up. That was not the problem. Then went to my orthopedic, which has operated on me 12 times for injuries in my knees and shoulders. He found a herniated disc - L1. I couldn't believe another one. I had already had disc fused in my neck and a titanium plate inserted and after a year was pain free. So, the next step was to go to a pain clinic. Did and was given strong narcotics. It was so bad I had to quit a job I loved, a florist, and driving was killing me. By then I was on a fentanyl patch 75 mg for 72 hours and 10 mg of percocet for breakthrough pain and soma for the spasms. I had several epidurals, with no success.
In November 2007 the muscles and locking up started. I will never forget the first date, November the 10th. It was cold and I wasn't sleeping, for about 5 days, and I locked up so bad I thought I was going to be a statue. My family called an ambulance and they checked everything, but nothing. December 5th at 3am in the morning I had stomach flu and back to the ER. I told them that I felt like something really bad was going to happen and please don't release me. I was crying signing the release forms. At 9 am I had a psychotic break. I split into two personalities, me and the one with all the pain. The ambulance came to get me this time and I was totally out of my mind and remember everything. When I got to the ER, the first thing they did was to give me a shot of haldole to shut me up.
When I was a little girl and grew up on a farm, I saw my Grandfather shoot a bull (he had for food) right between the eyes. He sent us away but being the having to know everything type crept back down and hid. The last thing I remember was the bull just fell over. I don't remember anything else and never told anyone. Obviously that was very traumatic because I forgot all about it until the psychotic episode. I kept screaming shoot it; kill it, just like that bull shoot it. You can just imagine what my family was thinking. After the shot, I could not even form a sentence and became extremely paranoid. They were taking me to have a CT scan on my brain to see if there was anything causing this. They kept asking me questions and I couldn't even comprehend what they were trying to say to me. After being there until 6pm (waiting on a psych evaluation) she cleaned me and said severe pain for so long and no sleep could do that to anyone and cleared me to go. I was still so paranoid I took off still in the hospital gown out a side exit door and just told my husband to get the car. By then the muscles spasms were starting in my upper back. Being so paranoid, I wasn't about to tell anyone at that hospital or even my husband. Traffic was terrible and when I finally got home my mother and daughter were in my bedroom being so sweet and fixing my bed and I told them to get out immediately. I was trying to hide how bad the spasms were getting. I couldn't even understand why I went to the ER in the first place and couldn't even watch TV because I couldn't comprehend what was going on. The spasms got so severe that my arms were being pulled back and so hard. It finally got to where I couldn't breath.
The same paramedics that picked up at 9am were the same ones that came at 9pm. The first thing they told me was Mrs. Spencer, now we aren't going to have any trouble this time are we? I couldn't even talk, I just nodded, my head. I was making such weird noises, trying to breath, and held my mother's finger so hard it was blue. When they got me in the ambulance the first thing they did was give me that oxygen mask. Oh, it was better than anything I have ever had in my life. It was funny, there was a young guy training and the older man wasn't paying attention but I was hyperventilating and I was like a crab all curled up. The young one kept trying to get my arm to lie down and it would pop right back up. I don't know how many times he did this but then when the older guy saw what he was doing he told him to stop it, she can't help it, that's what happens when patients hyperventilate.
We went to a trauma center this time. The minute the staff saw me they knew immediately that I was really in bad shape. It was December and I was soaking wet from sweating so much even my hair (which was long) was drenched. The RN and two LPN's were trying to help me. But in my paranoid state and not being able to talk, they kept trying to put a paper bag over my face and I kept turning my head back and forth so they couldn't. I wanted that oxygen. With the arm that would pop up and down, I poked the RN in the stomach 4 times to try to get her to stop it. She made everyone in the room leave and I didn't realized that she was trying to start an iv going and because I couldn't control that arm blood shot out all over the place. She had to strap me down and got right in my face and was very sweet but firm and told me that I knew perfectly well what I was doing and enough. She got that IV in and knocked me out with Valium. At that time I was under a contract with the pain clinic and they didn't care. They sent me home with Valium and more percocet.

Then the recession hit and my husband's business collapsed. I knew all along in the back of my mind that this was something neurological because my muscles were not listening to my brain. I came off all the narcotics slowly with a doctor weaning me off and from Thanksgiving until New Years Day I couldn't eat a full meal because of what withdrawal does to you. Of course these episodes continued and I would be back and forth at the ER. Finally my family doctor saw me when I was in a bad episode and got in my face and told me if you don't get control of this you will be paralyzed for the rest of your life. She also sent me to a Community Clinic that she volunteered at when she came into our area and used the hospital affiliated with this clinic. The last episode, before diagnosis, the doctor finally got it and put on my chart diagnosis is crucial and it was a neurological problem.
I started in the Clinic in May 2009 and in two weeks had the diagnosis that I had been looking for all those years. What a nightmare and what it did to my family. It just dawned on me the other day how long this has been going on. My daughter was 16 and now she is 21 and it has been like I was in a fog that whole time. I also found out that treating someone hyperventilating is no longer treated with putting a bag over your face and that haldole was the worst drug to give me because it causes severe muscle spasms. It has been quiet a journey my; friends and I call it the good, the bad and the ugly. The good I found was my faith was restored and all the people that are out there with this same disease have become like family. Without my faith and my family, I probably would have put an end to this nightmare myself. When I am having a really hard time I call it going into my dungeon. But in that dungeon is where God meets me and inspires me. I am so overwhelmed at how much God has turned something so horrible into something beautiful. I have to stop writing now, but I can't even begin to put into words the way God has just come into my darkness and swept me up into his arms and shown how much work needs to be done. Thank you for letting me share my story of this horrible disease so we do not have to endure so much torture due to lack of awareness in the medical field.

God bless each and every one of you.