Here is my story…
If you just want some quick facts on me, you are on the wrong page! Go to this page instead.
If you met me, you’d probably never guess I am sick. You’d probably never guess that the times you see me are pretty much the only times I am up and about. You’d probably never guess the amount of rest it will take before and after an event for me to be able to go, the amount of medications/supplements it takes to get me through a day, how rarely I can do basic things such as cook for myself, how every moment we are talking, I am focusing part of my attention on keeping my symptoms under control… You’d never guess if I am out and about, I probably have a fever. You get it: a lot of the time, you’d never guess how sick I am.
Let’s start at the beginning. I used to be an energetic girl. Even as a child I never watched TV and I was excited to get my first real job at 14. I look back at pictures of myself hiking, learning to surf, four-wheeling, and just living life and wonder what the girl in those pictures would say if I told her that her life as she knew it was about to change forever. I became ill in February of 2008 (my freshman year of college) after a bad bout of mono. I suddenly had a constant low grade fever, poor memory, swollen lymph nodes, and became fatigued very easily. Long story short, I went to almost 20 doctors between 2008 and 2012. Doctors either didn’t believe me, or didn’t know what was wrong. Some suggested it was all in my head, many suggested depression/anxiety, the intelligent ones acknowledged something was going on, but s/he wasn’t sure what that something was. Sometimes I wondered if I was crazy and nothing was actually wrong with me. Treatments I tried included anti-depressants, ADHD medication, hormone therapy, a tonsillectomy, hormone therapy, multiple long-term antibiotic treatments, vitamin injections, too many supplements to list, fibromyalgia drugs, steroids, extreme exercise, mild exercise, bed rest, diet modifications… and the list goes on and on.
I tried to live my life to the fullest as a chronically ill college student. My “mystery” illness made any sort of social life pretty difficult, but I did all I could to get as much experience in my field as possible. My dream was to make a difference in the world. I volunteered at a crisis and suicide intervention hotline, interned at a homeless shelter, supported individuals with disabilities, was a teaching assistant, and of course, was a fulltime student. I was on ADHD medication and tons of caffeine to keep me going. Feeling exhausted and flu-ish became normal to me and I considered it my version of healthy.
After graduating college, I scored an amazing job at an agency building a department to support high school students with developmental disabilities and their families. A few months after starting, my health took a sudden turn for the worst. I suddenly realized being flu-ish wasn’t my “normal”, there was something seriously wrong with me. After about half a year of working, my body would no longer allow me to cover up my symptoms with medication and a smile… it absolutely gave out. I had to give up my job, my apartment, what had become my hometown, and worst of all, my independence.
In 2012, after 4 years of suffering, I finally got diagnosed with a type of dysautonomia called POTS which stands for Postural Orthostatic Tachycardia Syndrome. It was such a relief to know it wasn’t all in my head as some doctors had told me. When lying down, my heart beats at about 65 beats a minute but standing, my heart rate jumps to 110-140 beats per minute. This syndrome is a result of a malfunctioning autonomic nervous system making symptom list seems endless. I experience severe fatigue, abdominal pain, dizziness, pre-syncope, nausea, vomiting, orthostatic hypotension, brain fog, joint pain, muscle aches, and all kinds of other symptoms. The most scary symptom is syncope which is a fancy way of saying someone faints. I also dislike pre-syncope which is what occurs right before fainting. It is extremely difficult to live life like this. I don’t even know that most people would call what I am living a life.
I went to Mayo Clinic where my POTS was confirmed, orthostatic hypotension was diagnosed, and the characterization of a hyperadrenergic state with upright posture was identified. I received a treatment plan in August of 2012. After not seeing any improvement after 6 months of strictly following the exercise plan I was given, the doctors began to suspect something else was going on, but were unsure what. The medications they recommended such as Midodrine and Propranolol have given me some symptomatic relief, but not much. In late July 2013, I started yet another treatment plan involving biofeedback. It helped in many ways and I experienced less syncope, less vomiting, and an ability to improve my circulation through careful breathing. These things were great gains, but not enough to give me anything close the to semblance of a normal life.
In early 2014, I was diagnosed with Ehlers Danlos Syndrome. EDS is a genetic disease which means it is passed down from parent to child; it doesn’t just develop like an autoimmune disease might. If a parent has EDS, there is a 50/50 chance any one child she has will have EDS. Gender does not increase or decrease the chances of a child inheriting the disorder, however due to hormonal differences, it seems to cause more issues in females. There are several types of EDS; the type I have is called type 3 or the hypermobility type. There is not any real treatment for this disease since it is genetic, but symptoms, such as pain, can be treated. This diagnosis explained why some treatments that work for many POTS patients do not work for me and I learned EDS pre-disposes patients to POTS. I also learned it is not normal for your joints to painfully slide partially out of place regularly! Who knew?
At the time I am updating this (October 2014), it looks like I am finally on the brink of getting some explanations for the regularly swollen lymph nodes, fevers, and severe fatigue which I had named my mystery disease. All of my mystery symptoms may be caused by an autoimmune disease called Sjogren’s Syndrome. It would explain the mystery symptoms, why my case of POTS is so severe, and why my POTS does not improve to a manageable level with treatments such as exercise and beta blockers. No amount of exercise will prevent an autoimmune disease from deciding to continue attacking my nervous system! I am hoping this is the final piece of the puzzle.
All of my diagnoses came too late for me to live the life I had planned. By the time POTS was diagnosed, I had already lost everything, except (Thank God) my family and a few close friends. There is no cure for POTS unless the root cause (an underlying condition) can be found and treated, but medication and exercise among other things are supposed to relieve symptoms. I have two underlying causes; Ehlers Danlos Syndrome and Sjogren’s Syndrom. EDS makes POTS worse, but I am hopeful that in my case, EDS alone does not make my case of POTS disabling and treating my autoimmune disease is the answer. At the current moment (October 2014), I am still extremely debilitated and was recently approved for Social Security Disability Insurance payments. I am happy I started working at 14 so I was eligible for it! I currently am working with some new doctors (immunologist, rheumatologist, neurologist) on treating my autoimmune disease in hopes of finding some relief and getting on with my life.