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
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Myalgic Encephalomyelitis: International Consensus Criteria
Myalgic Encephalomyelitis: Symptoms and Biomarkers
Neuroinflammation in the Brain of Patients with Myalgic Encephalomyelitis
Neural Consequences of Post-exertion Malaise in Myalgic Encephalomyelitis
Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls
PharmacoEconomics - Open
Healthcare Interventions and Outcomes
ISSN: 2509-4262 (Print) 2509-4254 (Online)
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A review on cognitive behavioral therapy and graded exercise therapy in ME
Subtitle: CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME
Neuroendocrinology Letters, Volume 30 No. 3 2009
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Cytokine signature associated with disease severity in chronic fatigue syndrome patients
TED Summit: What happens when you have a disease doctors can't diagnose
Small Heart Disease
No ‘Recovery’ in PACE Trial, New Analysis Finds
PACE: The research that sparked a patient rebellion
Hummingbirds’ Foundation for Myalgic Encephalomyelitis
National Association of Myalgic Encephalomyelitis
Nightingale Research Foundation
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
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.
From the beginning, this blog has always been about staying fit through chronic illness. Three years ago when I suddenly became totally disabled from a new disease called myalgic encephalomyelitis (M.E.), my world was turned upside down. One huge obstacle that differentiates this illness as unique is called exercise intolerance. It means that when I exercise, my disease is not just exacerbated but progresses to a new level of severity, which means my tolerance for exertion is that much lower, requiring even less energy to cause another crash and reduce my exertion threshold even further. This can create a downward spiral that is sometimes impossible to escape, leading people with M.E. to become essentially paralyzed in their beds, unable to even move their arm or have the energy to digest food. Many are fed through NG tubes and/or IV lines... Corpses that spend years in bed, unable to move or even tolerate touch from a loved one, alone in their agony and waiting for a cure. (Whitney Dafoe is one example.)
I’ve learned that if I keep my activity to under two minutes, I can be okay. I’ve learned that some yoga poses can actually drop my heart rate instead of increase it. I’ve learned that my body is much more tolerant with poses that keep me in a inclined or reclined position rather than standing upright. Armed with this information combined with my heart rate monitor and my previous expertise on diet, exercise, and fitness, I now believe that I can come up with a regimen that will allow me to again regain my muscle tone and become as fit as possible in my new position. I will never be a runner again, and cardio exercise will always be dangerous for me. But I learned a long time ago that the purpose of cardio is just to keep the heart in shape, and that weight gain or loss happens much more readily in the kitchen than the gym. So as long as I watch my diet (also affected by this disease; more on that in a later post), then gentle stretching combined with incredibly short segments of mild and carefully-monitored static internal core exercises (such as kegels), body-weight exercises (such as shallow squat), and yoga poses (such as bridge) that minimize movement and maximize important bio-mechanical muscle activity all just may be able to help me regain control of my fitness.
