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ALL I SEEK IS AN ACCURATE DIAGNOSIS & APPROPRIATE MEDICAL CARE.
RELEVANT CASE HISTORY
After earning my Master of Arts in Educational Leadership at 24, I was a full-time English teacher for 13 years as well as a part-time athlete: a runner, a weightlifter, a yoga instructor. I traveled, played roller derby, and trained for triathlons through multiple illnesses, chronic diseases, immunosuppressants, major surgeries, and a variety of severe infections all for MANY YEARS. (Read detailed accounts at my blog: RonniLee-FightingForIt.blogspot.com)
Around the time of onset, I had moved houses multiple times, started a new job, moved classrooms, and purchased a “fixer-upper” farm with my life partner. On October 6, 2015 I came down with what I thought was a very bad flu, compounded by both an HSV2 outbreak and a yeast infection. (Symptoms: sore throat, white spots on tonsils, mild fever, productive cough, nasal & chest congestion, debilitating fatigue, body aches, plugged ears, loss of voice, etc.) During the months that I struggled with this “flu”, I was also going through intensive yoga teacher training to become a yoga instructor in addition to teaching high-school English full time. This severe viral infection lasted WELL OVER TEN WEEKS before symptoms began to resolve.
Then on April 18, 2016, after a week of feeling fluish again (Dr. apt) and a week of feeling anemic (iron/ferritin labs), I experienced a sudden onslaught of progressive, debilitating symptoms stemming from seemingly EVERY BODILY SYSTEM AT ONCE (see list below), causing me to leave work in the middle of the day for a desperate visit to urgent care that revealed only inconclusive results.
I was never able to return to work or any of the above activities again. From that day forward I have hardly had the strength to get out of bed most of the time, and ever since I have struggled enormously to complete even the most basic level of personal hygiene tasks or the smallest of household chores, always taking frequent breaks from being winded, nauseated, weak, dizzy. Over-exertion or uncomfortable temperatures can leave me bedridden for days or weeks at a time, but even scarier is the steep decline in my cognitive function. I’ve seen no significant improvement of symptoms in over two years and have no reason to expect any in the foreseeable future. (Both my previous PCP and my psychiatrist agree in writing on that point at least.)
After a variety of basic blood tests, a referral to endocrinology to check cortisol function, and a referral to rheumatology to rule out autoimmune diseases, all to no avail, my primary care physician hesitantly settled on fibromyalgia as a “working diagnosis” under direction of the rheumy based on NOTHING more than my verbal description of my autonomic nervous system dysfunction, and then he gave up on any further testing or efforts to find a more accurate diagnosis for me despite my repeated requests for further referrals and testing. He has since shuffled me into med-management, just reiterating at each appointment how imperative it is that I try my best to exercise every day.
Although I have many overlapping symptoms with fibromyalgia, I agreed that the fibro diagnosis didn’t quite fit me. The fact that my symptoms involve the cardiovascular and nervous systems means that to me they were and are scary, so for over a year I searched for answers by myself. I recorded symptoms, analyzed mind-body reactions, researched endlessly online, aggressively looked for patterns, reasons, strategies, diagnoses... and I finally found my answer, the missing puzzle piece. However, by then everyone assumed it was psychosomatic. The more I tried to insist on further testing, the less my doctors believed me. So eventually I gave up, even though the closer I came to the truth, the more afraid I became about my own prognosis.
I have recently lost half my disability income for the rest of my life because of having a “questionable” diagnosis with no real evidence yet. I had until May 2018 to appeal this decision, so I found myself with good reason to renew my efforts to document evidence of my illness. With the recent appeal I submitted, American Fidelity has given me until the end of September 2018 to submit evidence of my illness.
MY SYMPTOMS
Daily and in Waves (severity varies daily & hourly):
- Severe fatigue and lethargy
- Weakness / shakiness
- Arrhythmia
- Dizziness / lightheadedness
- Orthopedic intolerance (markedly significant decrease in symptoms when prone or reclined)
- Post-exertional neuroimmune exhaustion
- Increased bruising
- Enlarged liver
- Severe cognitive impairment / fogginess
- Inability to focus
- Inability to multitask
- Severe memory impairment, both short-term and long-term
- Slow or inadequate information processing (visual stimuli, conversations, reading, TV, etc)
- Aphasia: difficulty in finding words, forming sentences, remembering details, simple math, worsening dyslexia
- Digestive Shut-down
- Anorexia: total loss of appetite
- Frequent nausea
- Increase in GERD symptoms (med breakthrough)
- Upper abdominal pain with digestion
- Occasional “Stitches” = the same exercise-related transient abdominal pain (ETAP) that I used to get when long-distance running, only now they happen from simply digesting a meal, even if I am sitting or reclined.
- Inability to maintain homeostasis
- Extreme temperature instability / intolerance (i.e. environmental, exertional, digestive, etc)
- Night sweats / cold sweats / hot flashes
- Cold extremities
- Pain & Neuropathy
- Body / muscle aches, pains, tension, trigger points
- Worsening neck stiffness, pain, subluxation, exposed nerves between vertebrae (C6 & C7)
- Frequent intermittent numbness/tingling in hands
- Repeated various infections (viral, bacterial, fungal)
- Overactive senses / processing disorders
- Sensitivity to light
- Sensitivity to clothing / pressure / textures
- Sensitivity to noises or chaos
- Very easily overstimulated
- Very easily overwhelmed
- Restless sleep
- Insomnia
- Inability to reach deep sleep
- NEVER wake up feeling refreshed
- Mornings are most difficult -- takes a couple hours of meds & massage before I can even get out of bed.
- Total loss of libido
- Mild long-term vision impairment
During or After Activity or Stress (sensitivity varies widely day-to-day):
- Tachycardia
- Shortness of breath
- Weakness / exhaustion
- Excessively hot / sweaty
- Delayed onset (up to 24+ hours)
- Total loss of cognition
- Total loss of speech / words
- Sense of urgency (adrenaline)
- Hyperventilation
- Vomiting / dry heaves
- Physical collapse
- Syncope
- Post-exertional malaise
- Delayed recovery (can take weeks on end)
Symptoms Worsen With:
- Any type and any level of physical or mental exertion or stress
- Upright posture (standing still < walking < seated < reclined < lying prone)
- Standing longer than a minute (worse than walking)
- Temperature instability (heat worse than cold)
- Hydrocodone/paracetamol narcotic (Rx for pain)
- Albuterol sulfate inhaler (Rx for asthma)
- Unprocessed meats, veggies, nuts, high-fiber diet (Difficult to digest = short term digestion & energy problems, though nutritionally superior for long term treatment. Solution: baby food, soups, processed meat.)
Symptoms Improve With:
- Reduction of external stimuli (all types)
- Horizontal posture (lying prone > reclined > seated > walking > standing still)
- Temperature stability (external assistance with homeostasis = air conditioning, fan, cool towel, blankets, heating pad, space heater, etc)
- Breo Ellipta corticosteroid inhalation powder (Rx for asthma)
- Valacyclovir antiviral (Rx for HSV2)
- Duloxetine nerve pain antidepressant (Rx for bipolar)
- Meloxicam anti-inflammatory (Rx for neck damage pain)
- Tramadol narcotic (Rx for pain)
- Carbohydrates = fast/easy energy supply for short-term effects. (Long-term high-sugar diet increases inflammation, SIBO, candida, pouchitis.)
- Antimicrobial/antioxidant home remedy that I drink all day every day = fresh lemon, green tea, aloe vera, Stur (stevia + fruit/veggie extracts for flavoring).
Symptom Progression/Cycle:
Below is a description of dysautonomia written by a doctor specializing in chronic pain and fibromyalgia. It is EXACTLY what happens with my pattern of symptoms and has been emailed to my doctor with no response. By now the panic part of the below equation has subsided since I now know where the symptoms are coming from, but the following description of the progression of physiological responses and symptoms is the most accurate description I have found for what I experience multiple times per day...
“When [patients] are under stress, the stress hormones are not released during the stressful period. They just keep working, utilizing normal energy and feeling exhausted from the whole ordeal. Eventually the ordeal is over, they get to go home to rest (super-duration). Any additional physical activity or any mental activity causes the threshold level to be reached and the stress hormones begin to be dumped into the body (hyper-excitability). The patient experiences a rapid heart rate, a sense of urgency, and shortness of breath. Adrenaline begins to circulate in the body and the patient feels hot, cold or sweaty. Because the person is not doing anything stressful at that particular moment and can see no significant precipitating factor to elicit this type of response, the patient may become more fearful. The patient begins to hyperventilate and the heart rate goes up faster, inducing extra adrenaline to be secreted and the other stress hormones to be released rapidly (super-susceptibility). Eventually the patient reaches a point of extreme panic (super-reactivity) and are often brought to the Emergency Room for work up and to be treated with various medications and sent home with usually negative findings.
“Within a short time the same process will be repeated. These cycles will continue until all the stress hormones are exhausted from the adrenal glands and from the central nervous system. Then the cycles will stop so that the body can regenerate all of the stress hormones. If these patients will later again experience another stressful condition until the delayed threshold is reached, the panic attack cycle will repeat itself. Therefore dysautonomia of the hormonal stress response elicits what many times people consider to be panic attacks of unknown etiology.”
“Within a short time the same process will be repeated. These cycles will continue until all the stress hormones are exhausted from the adrenal glands and from the central nervous system. Then the cycles will stop so that the body can regenerate all of the stress hormones. If these patients will later again experience another stressful condition until the delayed threshold is reached, the panic attack cycle will repeat itself. Therefore dysautonomia of the hormonal stress response elicits what many times people consider to be panic attacks of unknown etiology.”
