I know the day I had my children. I know the day my arms were injured. I know when I had my stroke. I have no idea when Fibromyalgia came in and stole my life away. It happened slowly, without my knowledge or consent.
I was never lazy, did not sit around eating bon bons with my feet up reading a book. I worked full time in nursing, volunteered with the girl scouts, rode horses, cooked, cleaned house, traveled, helped others, and raised a family. Never gave any of it a second thought. I lead a full and active life.
Having worked in the medical field I had heard of Fibromyalgia. Mainly that it was a name the medical profession gave to people who complained all the time. Then some how this horrible disease took over my life. Slowly, I did not even notice. At least not at first.
I kept going to the doctor. They ordered tests that were not pleasant. They looked up one end of me; they looked down the other end of me. They drained blood out of me. Nothing wrong, go home, be happy, enjoy your life.
I hurt, every inch of my body hurt. I couldn't roll over in bed with out being in pain. My teeth hurt, my knees, my back. I swear my hair hurt. I was cold all the time, had dry skin, a low body temperature. Medications knocked me out or gave me hallucinations. I found I couldn't do simple daily tasks. I would forget where I was driving. I would have panic attacks. I lived life in a fog. I felt terrible. I went to bed early, woke many times a night, and got up late. I had no energy. I dragged my self from my bed to the couch every day. I couldn't see at night so I stopped driving after dark. During the day the sun hurt my eyes. I learned where every bathroom in the county was located from the frequent need to stop and go! I developed asthma. Every breath hurt; I learned how to take swallow breaths. I could no longer take care of my daily activities. I cut my hours at work. Somewhere along the line I stopped doing my hobbies. I only did the absolute necessary tasks. I couldn't concentrate. I limped because my hips hurt. My balance was affected. My skin and muscles hurt all the time. Yet, there was nothing wrong with me except this crazy Fibromyalgia. I received medical advice from my local clinic. Go home, exercise, become involved with life. I decided to seek the best medical advice. I attended the Fibromyalgia workshop at the renowned Mayo Clinic in Rochester, MN. Three days of testing and classes with specialists in this dreaded disease. They confirmed I had Fibromyalgia. I found out there was NO treatment that worked, NO diet that helped. I learned the key was not to push myself. Not to over do any activities. Go slow and steady. Go Home.
A good friend had this Fibromyalgia too. I lived in Baldwin, she in Alma. We would get together and whine about how our lives were stolen by this damn disease. Stairs were a major problem. She had installed screen door handles on the walls going up her stairs. We pulled our selves up the stairs. I thought this was an excellent idea. Then winter set in. I spiraled down more and more. We now talked on the phone. She mentioned she was seeing a new doctor who treated Fibromyalgia. I did not really pay much attention, after all I had been to the best already, and there was no treatment that worked. My friend continued to tell me I should see her doctor. I did not think so. She would gently tell me how much better she felt. Finally the weather cleared enough for me to drive down to visit my dear friend.
When I arrived my friend looked so different. She was smiling (I thought I use to smile like that too, long ago). Then she bounced up the stairs ahead of me. I grabbed a handle to pull myself up the stairs. I vowed right then and there to make an appointment with Dr. Vrchota, my friend's doctor!
My first appointment was July 2003. Dr. Vrchota asked more question than any doctor I had ever met. She listened carefully to my complaints. She asked more questions. She ran tests on me. She reviewed the results with me. She laid out a treatment plan.
I still have Fibromyalgia but I do have my life back. Dr. Vrchota gave me my life back. I hate to think of where I would be today if I had not had that first appointment. I feel better now than I have in 20 years.
My friend once told me
"It is so sad that you are not being treated for your Fibromyalgia. No one deserves to feel that bad when there are treatments that can help."
How can I ever pay my friend back for her kind words and encouragement to make that first appointment with Dr. Vrchota?
April 11, 2004
I am writing this letter to let you know that I am moving out of Minnesota, and will no longer be near enough to have you as my doctor.
I just want you to know how very much you have helped me. I had been dealing with chronic fatigue, terrible headaches, and severe muscle aches for at least 10oyears. Prior to seeing you two years ago, my symptoms had become more severe, and I had also developed some very troubling neurological symptoms. My gait was very unsteady, I became so dizzy at times, I actually fell down. I was so weak I had to quit work. My ability to focus, concentrate and remember things was severely impaired.
These symptoms became so troubling that my "regular" doctor referred me to Mayo Clinic for a myriad of tests. They tested me for everything from end-stage syphilis to multiple sclerosis to mad cow disease. I had MRI's, CT scans, a spinal tap and endless lab work. Nothing showed up. Nothing. I was really staring to think I was a "crack pot" or a hypochondriac. My "regular" doctor was insisting at that point that I was depressed. (Who wouldn't be?) I'm a mental health professional, and although I knew I was depressed because I was so sick, I also knew that my symptoms were definitely NOT the reason for the symptoms.
I stopped driving because my vision became so affected. It was about at that point my "regular" doctor threw up his hands and said, "I'm referring you to Dr. Vrchota, because she's 'cutting edge' with all of this fibromyalgia and chronic fatigue stuff."
And so it began. You actually listened to me, and not only that, but you heard me as well. You reassured me at our first visit that I wasn't crazy or a hypochondriac. You reassured me that what I was experiencing was real, but that there was a way to treat me and that given time, that i would feel better. You have no idea how much hope that gave me. And then, with the supplements you prescribed and the dietary recommendations that you made, I began to start to be able to do more than just lay around. To be able to have enough energy to do some housework, or visit with friends, to even sit and read a book!!!! I was beginning to get some of my life back.
We've come a long way from those early appointments. I began to drive again. I can baby-sit my three-year-old grandson for weeks at a time! And can keep up with him. My "brain fog" has cleared and I'm able to remember things. I still have to be careful not to get over-tired or sleep deprived, or my neurological symptoms return with a vengeance, but on the whole, after two years of working with you, I am back. I am happy.
I would like you to know that I am absolutely positive that you saved my life. Literally. I have no doubt that if you had not "come along" when you did, I'd be dead. If not by whatever ailed me, then by my own hand. Living the way that I was had become intolerable. I hope that others will find you, and that you will be able to tender to them the hope and health that you were able to provide me.
And if any of your future pationts have any questions or need reassurance or support, feel free to have them contact me. I am a ringing endorsement of your abilities as a healer of body and spirit.
Again, many thanks. I'll miss you.
Mary Beth Norris