Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Monday, January 29, 2018

DEADLY SECRET

The secret that even most of the medical community doesn't know about is that CHRONIC FATIGUE IS A SYMPTOM, NOT A DISEASE. Fatigue can certainly be debilitating, but it is not a disease in and of itself. If you or someone you know suffers from chronic fatigue, you need to find out where it's coming from, because you could be suffering from something much more dangerous, such as Myalgic Encephalomyelitis. Doctors don't know that CFS doesn't really exist, so you need to be your own advocate! (HFME.org can explain when and how the confusion took place when the term "chronic fatigue syndrome" was created by one lazy CDC worker in the eighties.)


I am impatiently awaiting my appointment with a new primary care physician that will hopefully be more helpful in accurately diagnosing and treating me. I wrote down everything I need him to know since I know my cognitive symptoms interfere with my ability to communicate at doctor appointments. Below is what I plan to hand over to my new potential PCP. The first half is my own personal case history, and the second half is my research on myalgic encephalomyelitis.



If you don't have the ten minutes it will take to read this, then get the two-minute version by reading everything in bold...
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ALL I SEEK IS AN ACCURATE DIAGNOSIS & APPROPRIATE MEDICAL CARE.  

RELEVANT CASE HISTORY

After earning my master’s degree 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 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.  (RonniLee-FightingForIt.blogspot.com)

Then on April 18, 2016, after a week of feeling fluish (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, and then he gave up on any further testing or efforts to find a more accurate diagnosis for me.  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 have until May to appeal this decision, so now I find myself with good reason to renew my efforts to document 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
  • Severe cognitive impairment / fogginess
    • Inability to focus
    • Inability to multitask
    • Significant 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
    • 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
    • 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 be weeks on end)

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.”





▪  MYALGIC  ENCEPHALOMYELITIS  ▪
[ = “Inflammation of the brain and spinal cord with associated muscle pain” ]

“About 90 percent of people with ME/CFS have not been diagnosed.” (CDC)

A lot of misinformation exists in the professional health care communities surrounding myalgic encephalomyelitis and chronic fatigue syndrome, causing doctors to attribute severe neurological and cardiac symptoms to “chronic fatigue”, which in turn costs many ME patients their lives.  Since ME is also a disease of the cardiovascular and immune systems, the deaths get chalked up to heart attack or cancer instead of ME, only reinforcing the idea that ME or CFS are harmless. Make sure you get your information from sources who know that FATIGUE IS ONLY A SYMPTOM, NOT A DISEASE in and of itself.  Do the research!

M.E. RESOURCES




M.E. OVERVIEW

“Myalgic Encephalomyelitis (ME) is a chronic degenerative neuro-immune disease described in medical literature as early as 1935.  A child or adult with ME has serious immune and cardiovascular abnormalities, with resulting serious CNS (central nervous system) consequences due to brain injury.  

“The disease snatches the vital life out of patients on the level of diseases like MS, AIDS, mitochondrial diseases, end-stage renal failure, and cancer.  The unrelenting pain, cognitive impairment and exhaustion of ME are often literally unspeakable. Most times ME strikes relatively quickly (within hours, days, weeks).  

“Active and productive children and adults are suddenly robbed of vitality, with disability ranging from completely bedridden to somewhat functional.  Variable disability and lack of treatments result in lowered or poor quality of life.

“ME usually progresses to premature death due to direct and indirect complications of the disease.   Among the leading causes of death are heart failure and cancer, average life span 58.7 and 47.8 respectively, which is considerably younger than the general population (heart failure, 83.1; cancer, 72).”

“Newton’s earlier small study had found reduced heart mass and significantly reduced blood pumping by the heart, and Miwa in Japan has produced three studies showing that smaller hearts are present in people with ME” (due to atrophy).




M.E. FATALITY

Still searching for an accurate diagnosis with no real solid answers, I emailed my PCP multiple times during fall and winter of 2017, explaining that I was afraid of causing my own death from overexertion.  I begged for further testing, a referral to neurology, a referral to cardiology, a stress test, a phone call to the Stanford dysautonomia testing lab, anything. Just please “get me on a treadmill before my health insurance runs out”. He did not approve of any of these measures.  His only advice: no matter what, the most important thing you can do for yourself is that you keep exercising daily.  Just keep walking and using the painkillers to get through your day… and stop obsessing about your symptoms.  So I did. Or at least I tried. Then I discovered M.E. and learned I was right to be afraid for my life.

“Aerobic activity and repeated activity beyond an [M.E. patient’s] threshold worsens prognosis.”

“Dr. Elizabeth Dowsett says of ME patients, ‘20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.’”

“There are deaths [in M.E. patients] due to cardiac failure, brain death, tumours, and liver failure. There are sudden deaths following exercise/overexertion, and deaths which occur after a long period of slowly worsening illness. Many of these deaths are due to overexertion caused by mistreatment and so could have been avoided, if patients had been given basic appropriate medical care...

“Patients with M.E. must be given access to the appropriate care and support as soon as possible after becoming ill. This only rarely occurs currently. Access to the appropriate care has an enormous impact on the course of the disease in M.E.; many and perhaps even MOST severely affected M.E. patients would not have become severely affected had they been given the basic correct care and support when they were first ill.

“Today very few of those that are housebound by M.E. receive any appropriate medical care at all, and few patients are diagnosed very early on in the course of the disease and advised to avoid overexertion, as is appropriate. Thus the numbers of those with severe M.E. continue to rise, needlessly...


“What is so tragic about deaths from M.E. is that many of these deaths could (along with much of the suffering and severity of M.E.) have been prevented if only those patients had been given the basic level of support and care made available to patients with illnesses with comparable care needs such as multiple sclerosis and motor neurone disease.

“Deaths also sometimes occur in M.E. as a result of suicide.  As Dr Elizabeth Dowsett explains, 'It has to be said that suicide in younger patients and in earlier stages of the disability is related to the current climate of disbelief, rejection of welfare support and loss of educational and employment prospects. It is an additional and potentially avoidable factor.'

“Very often those with M.E. who commit suicide do so NOT because they are depressed but out of desperation. Because they are so ill and disabled and have no access to even basic care, or the most minimal support from friends and family... Thus deaths for suicide in M.E. could also have been prevented if only M.E. patients were given basic appropriate care...


“Moderate M.E. is more disabling than the most severe version of many other diseases and so also causes a high level of suffering.”

“Numerous studies support the assertion that exercise and, consequently, GET [graduated exercise therapy] can aggravate several characteristic ME symptoms, e.g. neurocognitive complaints, reduced exercise capacity, and widespread musculoskeletal pain, and amplifies pre-existing pathophysiological abnormalities in ME, e.g. immune dysfunction, induction of the IO & NS pathways, channelopathy and an impaired stress response. Large-scaled patient surveys and clinical practice show that CBT/GET [cognitive behavioral therapy/graduated exercise therapy] often induces a deterioration of the clinical status of ME patients and is harmful for many patients.

“Therefore, it is medically unethical to subject ME patients to CBT/GET programs or variants, like GET with limits (Nijs et al. 2008), without assessing biological abnormalities, monitoring functional impairment objectively and measuring the effect of exercise e.g. on the physical and neurocognitive performance (e.g. by using exercise test/retest measurements, blood analysis, and neurocognitive tests).”


“The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively [and heart failure, 58.7], which is considerably younger than those who died from cancer and suicide in the general population.”

“Patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower mean age of death for suicide (M = 41.3 years) and cancer (M =66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age].”




TESTING FOR M.E.

“As with a wide variety of illnesses (lupus, multiple sclerosis, and ovarian cancer for example) there is as yet no single test which can diagnose M.E. in all patients. Therefore, like these other illnesses, M.E. must be diagnosed by taking a detailed medical history, noting the type and severity of symptomatology and other characteristics of the illness and the type of onset of the symptoms. (An acute or sudden onset of symptoms is always seen in M.E. and this onset type rules out a wide variety of other illnesses associated with gradual onset). A series of tests may also then be necessary to rule out or confirm a suspected M.E. diagnosis…

“The one essential characteristic of M.E. is acquired CNS dysfunction. A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable. We have excellent tools for measuring these physiological and neuropsychological changes: SPECT, xenon SPECT, PET, and neuropsychological testing...

“One objective and reproducible technique for determining and measuring functional disability that should be used consistently is Cardio-Pulmonary Exercise Testing with measurement of VO2 max, anaerobic threshold, and maximal heart rate and respiration.  The test is well established, sedentary and ill norms are published and the technology is relatively inexpensive and quite available...

“In the absence of a second exercise test, the lack of any significant differences for the first test would appear to suggest no functional impairment in [ME] patients. However, the results from the second test indicate the presence of [an ME] related post-exertional malaise. It might be concluded then that a single exercise test is insufficient to demonstrate functional impairment in [ME] patients. A second test may be necessary to document the atypical recovery response and protracted malaise unique to [ME]...

“This article examines the legal and scientific basis on which an exercise stress test can provide medically acceptable evidence of disability for the patient.  This research group's excellent work proves the post-exertional disability that ME patients suffer, much worse on average than heart failure and COPD patients...


“Tests which together can be used to confirm an M.E. diagnosis include…”

  • SPECT and xenon SPECT scans of the brain
  • MRI scans of the brain
  • PET scans of the brain
  • EEG/QEEG brain maps
  • Neurological examination
  • Neuropsychological testing
  • The Romberg test
  • Immune system tests
  • Insulin levels and glucose tolerance tests
  • Erythrocyte Sedimentation Rate (ESR) tests
  • Circulating blood volume tests
  • 24 hour Holter monitor testing
  • Tilt table examination and standing/sitting/reclining blood pressure tests
  • Chemical stress tests
  • Physical exam
  • Cardio-Pulmonary Exercise Testing with measurement of VO2 max, anaerobic threshold, and maximal heart rate and respiration
  • Mitochondrial Dysfunction
  • TH1/TH2 imbalance
  • Natural Killer Cell Function (Activity) testing
  • Abnormalities of the 2-5A pathway (RNase-L ratio)
  • Virology
  • In-Depth Heart Function
  • Neurocognitive testing
  • Sleep studies
  • Endocrine testing

doctors & specialists @ www.hfme.org  & www.name-us.org

Out of all of the types of tests listed above, the only ones I have had access to other than a basic physical exam are one sleep test that came back abnormal and some blood tests, some of which came back abnormal and NONE of which involved any form of exercise, cardiopulmonary function, neurological function, or neck/head/brain scan.


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