One of the many issues ill people struggle with is trying to explain how or what their clinical symptoms feel like. Vice versa, and after another round of being a guinea pig during clinical excellence exams for already established doctors, it was clear that many people request non-medical terminology from their doctors also.
Even when fluent in English, my third language, I occasionally need to search for ways to explain what eye and nerve (neuropathic) pain feels like to people who have never felt that kind of pain before. After all, I cannot even begin to explain what an epileptic seizure or a stroke feels like. With 50+ symptoms associated with MS, I fear that anyone with this illness at some stage in their life will need to look for ways to describe their daily life.
One of the first MS symptoms I experienced, was left-side nerve pain. On Friday, I used this twenty times over, “It feels as if my arm is burning under my skin, and the skin around my hand is too tight, making me stretch my fingers out wide constantly. It also feels like a dull, heavy-feeling pain in my arm. The same goes for my left leg.”
My facial pain (trigeminal neuralgia)? “Severe stabbing pain in the left side of my face, as if an ice pick is stabbed in my ear, eye or upper jaw while talking, eating, smiling, laughing… It lasts from a few seconds to minutes, and happens repeatedly throughout the day and can go on for a few days or even months. The area where it happens is from just a tiny bit above my eye, the temple to below my eye/top of my cheek. For that reason, I try not to smile, no matter how awful that sounds because it kickstarts the pain just like that.”
The hardest symptom to explain is MS fatigue, and how utterly intense and devastating is it, because sure, “Everyone is tired after a hard day’s work, right?”
Wrong. Sadly, oh, so, wrong.
Two-thirds of people with MS experience fatigue, which can range from mild to extreme. I always classify mine as “severe,” most definitely severe, hence the need for narcolepsy medication. Overwhelming MS fatigue is unlike any other experiences you can feel, as it can be totally life-disrupting.
Add Uhthoff’s Phenomenon (or sensitivity to heat), and anything above 17°C is too warm for me. Quite often you feel negativity from others who don’t know how heat sensitivity and MS fatigue impacts you at once, because in their view, “Everyone loves the sun and warm temperatures!” Once they realise the non-imagined, physical impact it has on you, they should understand why you rather stay in a cool room where you can rest your drained body while others are huffing and puffing in 30°C temperatures.
The reason behind Uhthoff’s and extreme tiredness is a minimal elevation as little as 0.5°C, which is enough to raise your body temperature as it interferes with impulse conduction by demyelinated axons because of their lower “safety factor.” Heat sensitivity is not an imagined idea, it is a valid, medical fact.
In my case, as soon as I stop talking (in whichever temperatures), it means that I am using the last bit of energy I have left to keep walking or doing the activity I am currently busy with. I have been involved in a neuropsychological research project in Trinity College, Dublin, where cognitive skills were tested over a prolonged length of time. The results were quite clear: as time goes on, even easy enough cognitive skills diminish in people with MS.
Because fatigue does not show a relationship with how many plaques your MRI shows, it is often hard to gauge, even though it does predict later brain atrophy in the posterior parietal cortical lobes. Also, MS fatigue comes in two different varieties, the primary and secondary type of fatigue.
During functional MRI scans for physical and cognitive tasks, it was clear that inefficient reorganization of a damaged central nervous system took place. MS fatigue is also a medical fact, so, and is associated with other neurological symptoms.
During last Friday’s guinea pig session, I once again heard that people with MS have higher educations and a higher socioeconomic status than average, so who am I to dispute such a nice statistic? It was a great guessing game, and possible illnesses doctors thought my array of symptoms could be because of brain tumours, stroke, Guillain-Barré syndrome and sarcoidosis.
Thankfully I have none of the above, but because of a memory lapse in regards to my medication schedule this morning, I am reminded I’m living with MS extra hard today.
But… on we go. On I fight, each and every day. With you. With my family and friends, and who knows, perhaps in the future with those young minds who crossed my path last Friday during their clinical excellence exams.
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