When they ask, “What’s wrong with you?”

My officially diagnosed conditions and their medical definitions are as follows:

 

Ehlers-Danlos Syndrome (EDS) – Hypermobility type: “A group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications”. National Institutes of Health

Postural Orthostatic Tachycardia Syndrome (POTS): “Postural orthostatic tachycardia syndrome is a condition that affects circulation. It involves the autonomic nervous system and sympathetic nervous system”. Cleveland Clinic

Gastroparesis: “A disorder that slows or stops the movement of food from your stomach to your small intestine, even though there is no blockage in the stomach or intestines”. National Institutes of Health

Chronic Daily Migraines: “A moderate or severe headache felt as a throbbing pain on one side of the head. Many people also have symptoms such as feeling sick, being sick and increased sensitivity to light or sound”. National Health Service

Mast Cell Activation Syndrome (MCAS): “A condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing and severe diarrhea”. American Academy of Allergy, Asthma, and Immunology

Small Fiber Autonomic Neuropathy: “Occurs when the nerves that control involuntary bodily functions are damaged. The nerve damage interferes with the messages sent between the brain and other organs and areas of the autonomic nervous system, such as the heart, blood vessels and sweat glands”. Mayo Clinic

Restless Leg Syndrome (RLS): “A neurologic and sleep related movement disorder characterized by an irresistible urge to move in the legs that typically occurs or worsens at rest. It is usually accompanied by abnormal, uncomfortable sensations, that are often likened to crawling, cramping, aching, burning, itching, or prickling deep within the affected areas”. National Organization for Rare Disorders

Trigeminal Neuralgia:“A disorder of a nerve at the side of the head, called the trigeminal nerve. This condition causes intense, stabbing or electric shock-like pain in the lips, eyes, nose, scalp, forehead and jaw. Although trigeminal neuralgia is not fatal, it is extremely painful”. Cedars-Sinai

 

Here is how I would define the conditions in my own words:

Ehlers-Danlos Syndrome (EDS) – Hypermobility type: Double jointed. Doing party tricks with my flexibility. Some dislocations. Frequent subluxations. Stretchy velvet-soft skin. Thought this was a normal body type for most of my life. Gets more pronounced with age. Affects POTS and Gastroparesis.

Postural Orthostatic Tachycardia Syndrome (POTS): Dizzy when I stand up for awhile. Sometimes I faint. Heart rate skyrockets with slight movement and blood pressure plummets. Living in a frequent state of flight or fight. Thought this was a normal feeling for most of my life. Affects Chronic Migraine.

Gastroparesis: Stomach is paralyzed. Frequent severe nausea, vomiting, pain, and constipation. Can’t digest fiber and fat. Sometimes I get bezoars (fiber hair balls in stomach). Hellish journey to diagnosis due to gender stereotypes.

Chronic Daily Migraines: Severe stabbing pain on one side of my head. Accompanied by nausea and vomiting. Pain so bad that I have smashed my head against a wall and contemplated using a hammer on my face in a desperate bid to find/stop the stabbing. Triggers are elusive and pain can either be sudden or building.

Mast Cell Activation Syndrome (MCAS): Hives and hyper-sensitive skin. Especially bad at night. Skin looks like I have laid down in a bed of mosquitos and poison ivy. Mix of hives looking like small bug bites, rash, and large spider bites. Facial flushing. Shortness of breath. Night fevers. Itching so bad that skin sometimes bleeds. Thought I was being attacked by bugs every night. Affects Gastroparesis.

Small Fiber Autonomic Neuropathy: Being skinned alive with a burning hot knife. Sudden stabbing pain throughout the body. Having hands, feet, and legs squeezed in a clamp, set on fire, and then released, repetitively. Numbness alongside constant pain resulting in a lack of mobility, energy, and strength. No control over body temperature.  Affects Chronic Migraines, Gastroparesis, RLS, Trigeminal Neuralgia, and full autonomic nervous system.

Restless Leg Syndrome (RLS): Crawling and an almost deep itch sensation in the muscles of the legs and abdomen that only happens at rest and/or at night. Absolutely maddening, confusing, and causes insomnia. Thought this was not a real condition.

Trigeminal Neuralgia: Sudden shooting pain in my eyes and nose. Makes my eyes water and nose bleed/run. Shock-like pain made worse by cold and pressure. A miniature version of migraine level pain in face for short periods of time. Affects Small Fiber Autonomic Neuropathy.

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