Before my diagnosis, I was a healthy 62KG (9.7 stone or 132 pounds). Suddenly I stood at the bottom of the staircase after arriving home from work, crying because I didn't have the energy anymore to go up the seventeen steps, straight to bed. I was angry at myself for being so weak but the reason why was outside my conscious purview, and prolonged absences from work became the norm rather than the exception.
But then MS arrived, with a long list of medications and an even longer list of side effects, including weight gain.
Inactivity, medicine and eating my feelings also led to weight gain. Slowly at first, but enough for friends to utter the unforgettable “Maybe if you lost weight, you wouldn't be so tired” I was too fatigued to say that "I was half a stone lighter when I got my diagnosis and was as tired as I was back then, so no, it won’t be solved by your idea of losing weight. Do not bring my weight into this."
But upwards my weight went, despite being on a diet. Inactivity caused by, trigeminal neuralgia, vertigo, left side nerve pain and other MS symptoms was just the beginning.
Suddenly I was obese. I looked at my GP with anger and disgust on my face because obesity is often regarded as a dirty word in our society. Maybe if I ate less Mars bars from the candy machine at work or ice cream in the cinema, that might bring down my weight. Maybe I just needed to replace the battery in my weighing scales because it might be broken and thus reporting a higher number instead. Maybe I needed to increase the dose of my narcolepsy medicines to have more energy and ignore the added headaches so I can go to the gym. Or maybe I was just in denial and needed a wakeup call.
At 95KG, I did. Oh, no way I was 15 stone. Oh no, no, no. That weighing scale surely was broken, so in the bin it went.
I could deny it if I liked. I could deny anything if I liked.
Oscar Wilde, The Importance of Being Earnest
That was it. Fifteen stone. Ninety-five kilograms. Staring me point blank in my face.
When I finally had the nerve to investigate obesity and MS, there wasn't much glory to be found as proper research data seemed to be lacking in peer review metrics and worse, solutions.
I won't delve into the data points about obesity, but we all know it kills. It contributes to insulin resistance and heart disease among other ailments. It wasn't until my late GP prescribed me medicines and a healthier lifestyle plan that I was able to lower my cholesterol. Unknowingly for both of us, research into the very topic found in the meantime suggested a lack of vitamin D or obesity during childhood and adolescence may trigger MS. Oh dear, another unknown in the long list of triggers to our disease.
I have removed the shame and finger-pointing from my life, I am no longer ashamed to acknowledge that I am overweight. Other than MS, I have a tilted pelvis and plantar fasciitis, which makes walking from the couch to the fridge extremely painful. Yes, I am afraid of exercises that trigger my trigeminal neuralgia attacks, as something as banal as putting my feet on the ground causes stabbing pain in my face, eyes, and ears. I've tried different ways of weight loss exercising, to no avail. Again, yes, I need help, and believe that liposuction is the only answer, once I find a winning lottery ticket.
Research has shown that people with relapsing/remitting MS are more prone to disability due to obesity at the time of diagnosis. An increase in inflammation may be behind stiffness, pain, obesity and loss of balance related to autoimmune illnesses as well as high levels of inflammation in the CNS and high levels of cholesterol and triglycerides. These factors result in worsening MS symptoms.
Recent research is clear. Put on your comfy shoes, and go for a walk, or go to the swimming pool. Do what you believe you can do and stay safe.
Evidence for a causal relationship between low vitamin D, high BMI, and paediatric-onset MS, Neurology, 2017 (linked as 'research' in the post)
Obesity, MS Trust, 2022
Obesity Can Make MS Symptoms Worse, By Steven Reinberg, 2019
Despite Being Overweight, Most Do Not Adopt Specific Diets in New Study of People with MS, The National Multiple
Obesity and Multiple Sclerosis Susceptibility: A Review, Milena A. Gianfrancesco and Lisa F. Barcellos, 2020