"Here it comes, here it comes, oh boy it's starting now." What caused this daily prediction was what I called a "wave" of symptoms which put me into utter misery. My ears rang loudly and my eyes blurred, my lips were parched, while my hands got a dry, shrinking feeling and there was generalized muscle bunching. My facial muscles clumped up and the muscles between my shoulder blades became lumpy, causing burning pain. My arms, hamstrings, facial bands and calves were also screaming with deep pain.
Skin areas became hypersensitive and painful to any light touch or to pressure, as in sitting or semi-reclining. There was a stinging itch all over, as if a stinging jellyfish had lingered against my body. My face sweated. I was acutely and painfully hypersensitive to sound. My shoes caused a burning pain wherever they touched my feet.
I was weak, then intense, waiting for the involvement of the next body system to be affected. Often it was my heart, which labored sometimes even when I rested quietly. I became impatient and had to refocus constantly during these episodes. My eyelid twitched uncontrollably, as did my right ring finger. I felt like a living slide show, with a different symptom picture every few minutes.
In relation to all this, I was diagnosed as having the fibromyalgia-like syndrome which can accompany Lyme disease, babesiosia, and ehrlichiosis - the three tick-borne diseases for which I had tested positive. I also had abdominal pains, nighttime restless legs syndrome, hot/chilly feelings, and a daily worsening of physical weakness which I mistakingly blamed on some obscure medication side-effects.
Before my diagnosis, I thought I had some weird form of malaria because of the diurnal pattern of these waves of symptoms. My mornings often were blessed with fewer miseries. At first, i was hit by the "waves" from about noon to midnight with constant pain. Months of IV antibiotics, antiparasitic medicine, and now oral antibiotics have increased my strength and reduced the duration of the "waves".
The problem that those of us afflicted with these agonies have is that the symptoms are not visible; they seem quite improbable to doctors who are unfamiliar with the multisystem syndromes of disseminated tick diseases. Often, they become hostile in the face of the "incomprehensible". Pain and fatigue are not easy to visualize.
It is up to each of us to be persistent, clear, and steadfast in our explanations to the medical community regarding the need for understanding of these disorders, and to insist on help to achieve relief for each of these complex syndromes.