Avery Davis is a talented young fiddler in southwestern Virginia, who has been attending classes in the ETSU Bluegrass program, and playing fiddle with Loose Strings, an all-female bluegrass band based in Galax. A lovely, pleasant young lady and a very capable musician, Avery is one who always has a smile for everyone she meets, and is ready to throw down in a jam session at a moment’s notice.
But behind that big, beautiful smile has been an ugly truth. For the past two years Avery has been suffering from serious migraines, fainting spells, low blood pressure issues, severe fatigue, and gastrointestinal problems, all quite rare and unexplainable in an otherwise healthy, 18-year old girl.
She has seen dozens of doctors and undergone more medical tests than most of us endure in a lifetime, all either showing her as in perfect health, or resulting in a diagnosis of fibromyalgia or functional somatic syndrome, both the sort of pronouncements that physicians describe as a “trash can diagnosis.” These are ones that essentially mean that you are sick, and suffer from a wide variety of symptoms that can’t be explained by specific processes.
A recently resurgent intensity of her symptoms have forced Avery to drop out of ETSU and return home to look for healing, leaving her love for bluegrass music behind. She will no longer be performing with Loose Strings either, at least for the time being.
Let’s let her describe her medical difficulties in her own words, which thankfully include having found a doctor who has some unorthodox thoughts about her illness and some startling success in reversing such symptoms. It’s an inspirational story of determination, faith, and courage.
If you knew me several years ago, I seemed to be a perfectly normal, healthy teenager. As a kid, I had the same health issues as everyone else – colds, ear infections, strep throat, etc. – nothing out of the ordinary, or so it seemed. My family did tease me for being injury prone; we all thought I was just clumsy, but as I grew up and played sports, I was always hurt. I played travel soccer until I hurt my knee and it wouldn’t heal; then I played volleyball until my ankles were always a problem. Other than my physical injuries, I was basically healthy.
When I was a junior in high school, I developed a migraine after Christmas that would not relent. After two weeks of pain, my mom started taking me to the doctor. Two weeks turned into two months and now into two years. The daily headache has morphed over time into any health problem I could ever imagine. None of my symptoms have seemed to be permanent, except for my overall weak and feverish feeling. If there were any way to quickly describe how I feel each day, it would be to say that I feel as if I have the flu… every day.
Functional somatic syndromes are illnesses that are undiagnosed through testing; I have had so much blood drawn for tests that I have hoped would show what was wrong with me, but my tests are almost always normal. My body is far from normal though.
After my headache started to change into additional problems, I was diagnosed at Duke with fibromyalgia. It is really hard for me to say that word, because I believe fibromyalgia is simply a word meant to encompass an illness that our medical world has not yet figured out. I wanted to know what was causing this “fibromyalgia” – a couple of months before I was perfectly fine, and then I was told that there was basically nothing that could be done to help me, so we continued searching for answers.
Functional somatic syndromes, like fibromyalgia, have multitudes of strange symptoms that mimic other known health problems. I have experienced fainting/lightheadedness/low blood pressure (diagnosed as POTS, Postural Orthostatic Tachycardia Syndrome), breathing problems (diagnosed as asthma); severe fatigue (diagnosed as Lyme Disease); chronic nausea/digestive issues (diagnosed as irritable bowel syndrome); difficulty swallowing (diagnosed as silent acid reflux); and a period of weight gain coupled with high cortisol levels (diagnosed as Cushing’s syndrome). All of these diagnoses were eventually considered to be false. I’ve also seen specialists for high sugar levels; severe acne; brain fog and difficulty concentrating; anxiety; shifting teeth and TMJ (temporomandibular joint dysfunction) pain; and too many other things to list.
All of these problems have seemed to come and go in cycles. I have been sick all of this time, but there have been periods of time when I’m more able to function than other times. Over the past summer, my parents and I decided that I could either be sick at home or sick away at college; we decided that it may be a good thing for me to go away and do new things.
I was so excited to attend ETSU and to be able to work with the great bluegrass instructors there – music is what makes me most happy! I did the best I could, but over the fall semester, I found my health to be worsening again.
It was during this time that my mom corresponded with Dr. Pridgen in Tuscaloosa, Alabama. He has been researching chronic illnesses like mine for many years and believes that people like me are actually suffering from a systemic viral infection that does not show up during testing. Dr. Pridgen believes that my “normal” childhood and accident prone history weren’t really normal at all, and were foretelling the day when the viral infection within my body would hit the tipping point. He has conducted two clinical trials treating patients with issues just like mine (and is beginning his 3rd stage clinical trial), having great success bringing many extremely ill people back to good health. After seeing Dr. Pridgen in Alabama and beginning treatment, I have moved back home to get myself well. We are very hopeful that God will allow me to be Dr. Pridgen’s next success story.
The hardest part of this ordeal is having an illness that no one can see or name. I look healthy on the outside and have pretended to be okay as long as I could. I still leave the house when I can and put on my happy face (not many people know that I’m not as happy as I look), but it takes planning for me to do anything. I have to conserve my energy as long as possible; budget my time to get ready (because I have to lie down and rest several times); and put my mind in another place in order to forget how sick I feel. If I avoid people in public, it’s not because I don’t like them, it’s because it takes so much energy for me to talk. Using my brain to concentrate on what someone is saying in order that I can say something intelligent back takes everything I have in me.
Fortunately, I am pretty good at “mind over matter” and have been able to accomplish some cool things while spending most of my hours in bed. With music as my motivator, I was able to rehearse and perform in my high school musical as Velma Von Tussle in Hairspray my junior year of high school, and as Sandy in Grease my senior year. I was also able to travel and perform with the Loose Strings band for the past year, visiting many fun places that helped to take my mind off of my situation. Music festivals have been my ultimate joy and have given me several opportunities to pretend for a few days at a time that I am normal.
I am a firm believer that God only gives you what you can handle. I am very thankful that I have a supportive family and that I am at a point in my life that is fairly convenient for spending most of my time in a non-productive way.
My job right now is getting well, and thankfully I don’t have to worry about anything else but that. This situation has given me great insight into the struggle that so many people face, and the lack of support that is given to them. Most people (including physicians) are of the belief that people who don’t have a positive test result for a documented illness, syndrome or disease are unmotivated, lazy or that it’s “all in their head.” These people are just like me: normal one day and sick the next; hoping for a return to normality, desiring the ability to work and be productive, and praying for a cure.
This a very brave and ambitious young lady, one that will be a profound credit to our music when she can overcome this hurdle and return to the sort of life every teen-aged girl has a right to expect. She isn’t asking for anything from the bluegrass community but emotional and prayer-based support, which we can surely readily supply.
Let’s all hold Avery Davis in the light, which may be all we can do to help, and hope to hear wonderful news from her soon.