Happy New Year, everone!
What follows is my lengthy attempt to summarize most of my experience of the mysterious, undiagnosed illness I have endured for at least the past two decades. I will start in early childhood and proceed to the present.
I believe I experienced such common childhood diseases as colds, flus and earaches with normal frequency. The only unusual infection I may have had was a suspected pneumonia during infancy, which my parents told me was treated with an injection of an anonymous steroidal drug. I tended to sleep much more than normal as an infant.
I have been underweight throughout my life. I am the thinnest child of thin parents.
I was able to exercise almost normally throughout childhood and adolescence. I never needed to be excused from physical education classes. I avoided intensely aerobic sports such as fast running and basketball due to their tendency to cause lightheadedness, nausea or fainting (vasovagal syncope). I favored sports with rest breaks such as tennis, but was never able to be competitive with healthy players of the same skill level. Occasionally I noticed that I held my breath while I played at peak intensity. Vasovagal reactions to surgical trauma, pain or strenuous exercise continue to occur.
I am not exactly sure when I developed trouble with hot baths and showers, but for at least 20 years they have also caused lightheadedness. If the bathroom is well-ventilated by leaving the door open and a fan running, hot showers (but not baths) have been tolerable. I have also tolerated summer temperatures without air conditioning and long periods without sitting. In general, I would rather be too warm than too cold.
In my late teens and early twenties I developed severe cystic acne that was treated with erythromycin, tetracycline and finally Accutane. Around the same time I began to have occasional heart palpitations. I also noticed that I felt sluggish for a few hours following a meal with a high sugar content.
In July of 1986 at the age of 23 I began to have continuous symptoms at rest and thereby became partially disabled. I was exercising heavily in the weeks leading up to onset, and had taken some time off to recover from a cold of normal duration and intensity. The sequence of arrival of my chronic symptoms is a little hard to remember at this point, but approximately it was as follows:
1. Exhaustion (to be distinguished from fatigue, which is actually sort of a good feeling) accompanied by a strange sense of dryness (or perhaps irritation) in my nasopharynx. The "center" of my exhaustion was (and still is) located in my chest.
2. Multiple small (3mm diameter) vesicles on my fingers, palms, toes and soles (which may have been the result of very high ~ 5g daily vitamin C intake). My PCP at the time aspirated a vesicle and tested the clear fluid contents expecting to find evidence of a blood infection, but nothing was found. The number and size of the vesicles soon decreased; occasionally today I still see a few about 1mm in diameter.
3. Visual disturbances (loss of some contrast and night vision, "bleeding" colors under strong light, and negative afterimages). The afterimages are more intense if I have a fever, which is rare.
4. A sense of lack of clarity or reality (similar to a dreamlike state).
5. A feeling of swelling and irritation in the lymph nodes directly beneath my ears and jaw. I sense a "connection" between those nodes and the exhaustion I feel in my chest. Those nodes also frequently feel worse after I eat, and are now nearly as hard as bone.
I was evaluated by infectious disease, allergy and endocrine specialists in 1986; all tests were normal. The latest tests for Lyme Disease and coinfections are also negative.
In 1987 I had a "remission" that lasted 1 day. The remission occurred 2 days after a couple of plane flights. On that day, I had no fatigue and no visual disturbances, but did have a rather purging attack of diarrhea in the morning. And speaking of diarrhea, when I had an intestinal parasite test done in 1994, it involved drinking a large quantity of salt (Fleet's phospho-soda) and water that was intended to wash my intestines (and any parasites) out completely. The next day, I felt much better. I decided to repeat the purge about a year later, but it had no effect.
In 1988 I took a homeopathic combination viral nosode that for one day caused fever and throbbing in my solar plexus. I felt very strong for about a week afterward, but then began to feel needle-pricking sensations all over (including my eyeballs) as well as burning in my esophagus. Those two symptoms gradually subsided and are no longer present. However, the throbbing in my solar plexus is frequently present.
In 1989 I noticed that my breathing became labored if I consumed a significant quantity of alcohol or fat. My breathing was comfortable as long as I avoided those foods. My breathing during sleep was deep and heavy.
My illness was rather stable for 15 years, then began to worsen toward the latter half of 2001, at which time I noticed much more frequent palpitations—as often as every exhalation. Palpitations are also more frequent when I lie on my left side. I was told by a physician that the palpitations are a result of my low blood pressure, which has been as low as 68/30 at rest.
In March of 2002, I began to continuously feel that I am suffocating. It is not a feeling of obstruction or panic; it feels as if there is simply not enough oxygen in the air, or as if I were under water and need to come up for air, or as if I were hyperventilating. The feeling does not worsen immediately with effort and is in fact most intense at rest. The more intense it is, the shallower I breath. Eating often makes it significantly worse. Sneezing sometimes makes it worse. Even a single Advil tablet makes it worse. For several weeks I noticed an improvement in my dyspnea after ingesting the juice of 3 lemons per day, but that treatment is no longer effective. Hyperbaric oxygen was only briefly and mildly helpful.
Strangely, since onset of chronic symptoms in 1986, I have felt slightly better overall when I have a cold. I can say the same about the flu, provided there is no vomiting. Whether the relief is due to the fever or immune activation or both has not yet been determined. However, a trial of liothyronine in 1992 was not helpful.
At the beginning of 2003 I began to chronically feel swelling and irritation in my gums. Frequently my heart pounds when I awaken in the morning, and at various times throughout the day. Irritability continues to grow.
Sleep is utterly unrestorative. I typically feel worse when I awaken than the night before. Polysomnography shows numerous abnormalities. Since March 2002, the sensation in my shoulders and arms when I awaken in the morning is that I have not slept, but rather lifted weights all night. My brother says that when I sleep, my breathing is shallow, smooth and regular. My breathing has been somewhat freer during the day if I get less than 8 hours of sleep per night. When I hold my breath, pulse oximetry shows that my oxygen saturation slowly rises from a baseline of 95 to 99. This result is consistent with a finding in 1996 that my metabolism is almost completely anaerobic when I attempt to exercise.
I have no morning stiffness. Painful cramping of the posterior side of my rectum is an occasional occurrence made more likely by bowel movements close to bedtime. Cramping of my neck and shoulder muscles has become more and more frequent. Since the dyspnea began, I've noticed a significant increase in muscle lactic acid buildup after activities that I formerly tolerated. It takes about a week for the lactic acid to disperse completely.
In February 2006 my cardiac output was measured at 3.34 L/min supine and 2.30 L/min standing. My supine output dropped to 2.8L/min in July 2006. These results are worse than the output produced by the average patient currently hospitalized awaiting heart transplant.
A diagnosis of Chronic Fatigue Syndrome (CFS) has been suggested. Although I clearly have A Chronic Fatigue Syndrome, I do not have THE Chronic Fatigue Syndrome for the following reasons:
1) I am remarkably free from allergy, infection and chemical sensitivity.
2) My natural killer cell number and function were not impaired when tested.
3) My exhaustion has been centered primarily in my chest, not my muscles or brain as reported by most CFS patients. Until 2005, I experienced no significant cognitive impairment, nor muscle pain, nor joint pain, nor fever, nor sore throat.
4) During most of my illness, exercise was almost as likely to be helpful as harmful to me. Exercise was most likely to be beneficial when the muscles involved had not been exercised for at least one month.
5) My prominent symptom of dyspnea does not usually occur in CFS.
6) The onset of my illness was gradual, neither sudden nor obviously infectious.
7) My exhaustion is constant, not relapsing and remitting.
8) My cortisol level falls with exercise but responds normally under mental or emotional stress.
Cardiopulmonary disease, neuromuscular disease, hypovolemic anemia, thyroid and adrenal deficiency, and various chemical toxicities have been ruled out. Lab abnormalities have included a very low reticulocyte count; abnormal arterial blood gases base excess and T&B cell subsets; mildly elevated Anti-DNA (double stranded) and anti-parietal cell; positive postprandial ANA; high postprandial plasma lactate and blood pyruvate; low fasting insulin; low urine lactate; high 1,25-dihydroxyvitamin D; elevated urinary serotonin and norepinephrine; low interleukin-2 and interferon gamma; very low interleukin-12; and high urine 5-oxo-proline (a.k.a. pyroglutamic acid).
Thanks to all who have read this far! And more thanks to anyone who can respond in a helpful way.
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