All the symptoms

“Hugs hurt” and many other miseries, from poopageddon to muscle madness

It almost always hurts when my wife gives me a hug. My ribs always feel sore. She is a waif, not exactly a power hugger, but she can hurt me easily.

I have never told her this. I have never had the heart.

This is one of the many ways that I know that something is obviously wrong with me. When I suffer self-doubt about the seriousness or even the reality of my condition, I just have to remind myself that hugs hurt, and that ain’t right.

I have many symptoms like that.

And I just have too many symptoms. Which also ain’t right.

Before I embark on a multi-year mission to try to reclaim my life as I once knew it, I should spell out exactly what’s wrong. A state-of-the-body address. “It’s like long COVID” is the elevator pitch for my illness — see the intro post for this project — but this post is the full pitch meeting. This is the detailed summary of what I’ve been living with. There’s also a follow-up post that goes into colourful detail about some of these.

Vancouver’s Burrard Bridge in the mist. Just because it’s moody. It’s hard to pick photos for this subject matter!

All the chronic symptoms of the last seven years

• My whole body hurts a bit, everywhere, all the time. Sometimes it gets more intense, and I cannot do anything comfortably. But usually it’s just unpleasant.

• Malaise and exercise intolerance. I often feel weak, woozy, and queasy, but especially after exercise. Mild strength training can make me feel like throwing up within minutes, which feels a lot like motion sickness.  Many workouts make me outrageously sore for days. Occasionally I get these symptoms without any provocation at all.

• A bizarre parade of random aches and pains, including some regulars like trigeminal neuralgia, neck and throat pain, thunderclap headaches, and a throbbing spine. The sheer variety is almost a symptom unto itself. Several times per day I experience unprovoked random stabs and shocks of pain in random locations, with random qualities.

• Muscle madness! I rarely go a day without a muscle getting crampy or jumpy (benign fasciculation syndrome). And my quads ripple visibly under load, a phenomenon known as myokemia. These muscular misbehaviours stand out as potential early warning signs of serious disease — but it has also now been seven years without any obvious escalation.

• Tonsillitis. In 2014 and 2015, I had a nightmarish year-long experience with severe, persistent tonsillitis that was caused by a nasty tonsil stone. Although I improved dramatically after that was removed, the tonsil has never been the same: I now get several episodes of tonsillitis every year.

Isolated major or potentially significant symptoms

I have had a few spectacular battles with symptoms that seem to be history — they happened, they stopped, and have not recurred. These may or may not have anything to do with the larger problem:

• Poopageddon. For about two years, my poops were awful. It was like crapping toothpaste… and then I would leak sticky, slimy shit for hours after every bowel movement. I had to shower multiple times per day.

• “Halo” pain. Off and on in the first couple years I suffered from episodes of pain in the air around my hands. Very hallucinogenic.

• Chest pain. In 2015 and 2016, I had several multi-day flare-ups of strong waves of pain in my chest, disconnected from movement, position, or exertion.

• Calcific tendinitis. A spectacular multi-day episode of extreme, completely disabling shoulder pain. By far the most intense pain I’ve ever experienced.

• Acute illness. In four distinct episodes in 2020 and 2021, I was struck by much more serious malaise symptoms than ever before, and indeed unlike anything I’ve ever experienced: nausea so bad I lost 12 pounds in two weeks, extreme shortness of breath, lightheaded, weak, hot flashes and chills (but no fever), numb hands and feet. Each episode declined in severity.

• Painless migraines. You might think that this sounds like a contradiction, but there is such a thing: just visual “aura,” arcs of flashing, vibrating, jagged light. I experienced it vividly many times 2015–2019, but never again since then.

Lifelong symptoms

I have a few symptoms that are notably much older than my current problem, dating back to young adulthood or even childhood:

• Vulnerable to overuse injuries. I just get one after the other, and always have.

• Horrible insomnia, often badly polluted with vivid and surreal nightmares. This is likely caused by narcolepsy, which is a neurological disease of sleep regulation that makes it hard to both stay awake and stay asleep. I’ll devote a post to this later. But lifelong significant sleep deprivation could explain a lot about my current condition.

• My limbs “fall asleep” too easily. If I lie down, one or both of my arms will be going numb within five minutes. This has been going on for at least twenty years.

There’s always something wrong

Very few of my most persistent symptoms have been severe themselves. But they add up. Put all that together, and it’s been an unrelenting disaster. There’s always something wrong with me: every single day brings at least three or four prominent symptoms, and sometimes three times that many. For seven years, the honest answer to the question, “How are you today?” has been, at best, “Really uncomfortable!”

But wait, there’s more!

After spending a thousand words just summarizing all of my symptoms, I knew I wasn’t done, not even close. For the rest of the symptom story, see Aug 24th’s post, “The worst symptoms in more lurid detail”:

The worst symptoms in more lurid detail