One of the people on the CPT2 Google Group responded to my post about ADHD and CPT2 with some very thoughtful observations, including this one: "There is a lot of room in between for sub-acute symptoms: muscle pain, fatigue, etc without full out rhabdo (I also am fortunate not to go into a full out rhabdo situation but somehow I now have near constant day to day issues)."
Wow. That struck a chord with me. I also have very frequent issues that are systematic, but easily mistaken for other things. I am going to try to list the symptoms I experience during times short of full muscle breakdown. Some of them are probably unrelated to CPT2, but I'm sure others are related. I will be updating the list as I remember/experience more of them.
Low Grade Fever: This is a new one for me. On and off for the past half-decade, I've noticed I frequently get fever in the 98.7 to 99.9 range. This usually lasts an hour and then is gone. My wife pointed out that these fevers usually follow a CPT2 episode, sometimes by as much as a day. That made me realize that the fevers also follow CPT2 triggers, even without a noticeable CPT2 episode (i.e. eating too few carbs, exercising, stress).
Nausea: I often get nausea if I eat too high a percentage of fat at a meal. This is relatively new to me, and I wonder if it is related to the CPT2. I know I'm not supposed to have much fat at all (a former nutritionist told me my calories should come from 70% carbs, 20% fat, 10% protein). It is possible that this is my brain signaling me to eat the right amount of fat for my condition.
Fatigue: I'm sure that many people get fatigue when they exercise, are stressed, don't get enough sleep (um, tautology, anyone?), or don't eat enough. That said, I notice that I'm tired for about 48 hours after a major episode -- and I have fatigue a lot of times following a triggering event even in the absence of an obvious CPT2 episode.
Indecisiveness: This goes back to the post about ADHD and CPT2 -- I have trouble making decisions when I am experiencing the build-up to an episode.
Impatience/Bad mood: For years, I had a night-shirt with the Snow White "Grumpy" character on it. It was my way of poking fun at how grumpy I was sometimes. Since my hospitalization, I have kept an eye on the conditions that accompany my mood shifts. I've long known that a "sugar crash" (i.e. eat a lot of simple sugar and after the body floods with insulin, a sugar-low happens) will trigger a mood shift, often mimicking symptoms of depression. My recent observations are that I very rarely deviate from a great demeanor unless I am hungry, sick, stressed, have recently exercised, or have otherwise experienced a CPT2 trigger.
Binge-type eating: This one is easy to explain. As background, for me, the pain of a CPT2 attack is quite similar (often identical) to the muscle aches one gets from working out too intensely. In addition, the pain does not magically go away once I have had sugar and the muscle breakdown has stopped. Instead, the pain goes away in about the same manner that muscle pain from over-exercise goes away -- slowly. These factors both drive binge-eating (or, more precisely, a carbohydrate frenzy) under two circumstances. The first circumstance is when I experience muscle pain that feels like a CPT2 attack has happened. I want to stop the attack effectively and quickly, but because the pain doesn't abate for hours (at least), I can never tell when I've eaten enough. Fear of the attack worsening drives me to carbohydrate frenzy -- because I can never tell when the attack has stopped worsening. The second circumstance is when I feel the beginning of muscle breakdown. This can even be in a small muscle group, like the muscles in my hand after using a screw driver for too long. My brain starts to scream at me "you're going to have a CPT2 attack if you don't eat". That's all I need to hear to grab many carbs. This second circumstance is less of a carb frenzy than the first because the absence of any major muscle breakdown means that the symptoms abate relatively quickly.
Cloudy urine: I know, outside of a medical context, this is too much information. That said, I notice that during periods when I'm at risk of a CPT2 attack or experiencing a mild one, my urine has, well, texture. The closest thing to an analogy is that it is like I'm looking at the toilet water through a heat source like the area above a lit candle. There is almost a shimmery aspect to it. Super weird.
Forgetting to eat/Unable to decide to eat: This is probably a subset of the "indecisiveness", but it has an additional aspect that bears considering. I have always had trouble controlling my weight, and I also know that some foods (carbs) will terminate a CPT2 episode, while others (fats, proteins) won't do a thing for me. This ends up putting me in a choice spiral. "Is this really a CPT2 attack? If not, I'm going to get fatter." "The only things on the menu all have too much fat or protein, that's too many extra, unhelpful calories -- should I eat elsewhere?" If I get into the "I need to lose weight" mindset, it is common that the cloudy thinking that accompanies an impending CPT2 attack combines with the "lose weight" goal, and I just forget that I need to eat.
Hypochondria: CPT2 is a condition that pops up at almost random times. It can cause all kinds of strange effects (mostly muscular). This makes me very sensitive to my physical condition. Whereas somebody with no fatty acid oxidation disorder might simply ignore a mild shoulder pain, I focus on it -- "is it an impending attack?" Even if I'm sure it is unrelated to CPT2, the CPT2 has made me think about it. Once I'm thinking about a physical condition, it is much easier to worry about it.
Messy/Forgetting to put things away (a/k/a brain cramp): A combination of the fuzzy thinking and an innate desire to minimize muscle use during an episode or during conditions where an episode may arise results in exactly what you would think it results in: Minimizing muscle use. I think probably 90% of the time, it is simply me being messy. But I have caught myself expressly thinking things like "my legs hurt, no way I'm walking all the way to the garage to put this away".
Predicting illness: Finally! A positive aspect of CPT2. In the absence of other triggers, if I feel CPT2 symptoms coming on, it is very frequently an indicating that I have an infection (i.e. a cold) that is nearing the end of the incubation cycle. In other words, CPT2 symptoms are often the first symptom of an illness.
Aphasia: I have not experienced this (at least, not that I've noticed), but there is anecdotal evidence that other CPT2 patient have experienced it.
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