A lesson in chronic multisystemic diseases
…waking up every day to extreme fatigue, nausea, body pain, weight fluctuations, and more. You constantly feel too tired, weak, and in pain to perform day-to-day functions or engage in your favorite activities. This is a daily reality for millions of people who suffer from ME and other related chronic post-infection diseases, such as long-COVID, POTS, EDS, MCAS, NCS, Chronic Lyme/MSIDS, among others.
These are multisystemic diseases that simultaneously affect the brain, nerves, muscles and most every vital organ.
While each has its own symptoms, these diseases are often characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic indicators, chronic pain, and other symptoms made worse by exertion of any sort—physical, emotional, or mental.
The root cause of these diseases remains a mystery, however, in many cases symptoms have been known to be activated by an infection, virus, genetics, or a triggering event, such as stress or extraordinary activity.
These diseases can last for years or a lifetime. Often there is no proven diagnostic test, treatment, or cure in sight, leading sufferers down a multi-year journey to find the care that offers a better quality of life.
Many see the afflicted as typical or even ‘healthy’ in appearance. What they don’t see is the debilitating pain, fatigue, cognitive impairment, and the onset of “crashing” due to exertion.
Multisystemic diseases impacting most every system in the body.
Unrefreshing sleep, or sleep that remains non-restorative regardless of duration. Abnormal sleep disorders include delayed onset of sleep, fragmented sleep, light sleep, and deep sleep.
PEM occurs is a consequence of exertional activity worsening a patients’ symptoms and function after exposure to physical, cognitive, emotional, or orthostatic stressors. PEM manifests in the form of a crash that can occur 24-48 hours after peak exertion. The crash itself can last for days, weeks, or even months.
Cognitive performance often worsens because of continued physical, mental, emotional, and/or orthostatic exertion. Symptoms can wax and wane with energy expenditure, manifesting as complications with short-term memory, concentration, and multi-tasking.
Orthostatic Intolerance is a term used to describe the exacerbation of symptoms during upright posture, that are relieved or ameliorated by lying down or reclining. Symptoms may be presented as cognitive processing issues, lightheadedness, fainting, headache, fatigue, tremors, heart palpitations, exercise intolerance, nausea, sensitivity to heat, and sleep abnormalities.
Chronic pain amplification disorder occurs when the volume of pain sensation in the brain is turned up too high. It may manifest as stiffness, achiness, sharp shooting pain, tingling and numbness, light and sound sensitivity, and may originate in the muscles, joints, bowel, bladder, pelvis, chest, head.
Immune impairments include acute infection-like issues, perpetual flu-like symptoms, sore throat, tender lymph nodes, fever, new or worsened sensitivities to certain substances, such as foods, odors, medications, or chemicals.
Making a difference in people’s lives.
Chronic post-infection diseases continue to test the medical community. While a cure is not immediate, there is hopethrough the efforts of highly reputable research, patient care, and disease advocacy organizations.
Beyond our coalition partners, there are a variety of other resources that can be useful to those living with chronic post-infection diseases. Explore this list for more information:
Chronic multisystemic disease glossary
Myalgic Encephalomyelitis (ME) is a complex, fatiguing long-term medical condition diagnosed by required primary symptoms and criteria, and often involves a broad range of symptoms. Distinguishing core symptoms are lengthy exacerbations or “flares” of the illness after ordinary physical or mental activity, known as post-exertional malaise (PEM); greatly diminished capacity to accomplish tasks that were routine before the illness; sleep disturbances, orthostatic intolerance (difficulty sitting and standing upright); cognitive dysfunction, and chronic pain throughout the body.
Chronic Lyme Disease is a disease transmitted to humans by the bites of infected ticks. The disease can affect multiple body systems and produce a broad range of symptoms. The most common sign of infection is an expanding red rash that appears at the site of the tick bite about a week after it occurred. Other early symptoms may include fever, headache, and tiredness. If untreated, symptoms may include the inability to move one or both sides of the face, joint pains, severe headaches with neck stiffness, and heart palpitations. Despite appropriate treatment, about 10 to 20% of people develop joint pains, memory problems, and tiredness for at least six months.
Graves’ disease is an autoimmune disease that affects the thyroid. It frequently results in and is the most common cause of hyperthyroidism. It also often results in an enlarged thyroid. Symptoms of hyperthyroidism may include irritability, muscle weakness, sleeping problems, a fast heartbeat, poor tolerance of heat, diarrhea, and unintentional weight loss. Other symptoms may include thickening of the skin on the shins. About 25 to 80% of people with the condition develop eye problems. The exact cause of the disease is unclear; however, it is believed to involve a combination of genetic and environmental factors.