An MS Patients’ story: How the Pandemic Has Changed How I Manage My Chronic Illness

Stuart SchlossmanAn MS Patients Story, Multiple Sclerosis

Written by Amy Mackelden on November 4, 2020
Medically reviewed by Arefa Cassoobhoy, MD, MPH 

The COVID-19 pandemic has impacted people all over the world, but those with medical conditions have found themselves disproportionately affected.

For starters, the Centers for Disease Control and Prevention (CDC)Trusted Source points out that people with underlying medical conditions are at an increased risk of severe illness and complications if they contract the coronavirus.

Plus, a June CDC report Trusted Source found that people with underlying conditions who were diagnosed with COVID-19 were 6 times more likely to be hospitalized and 12 times more likely to die from the disease than those without reported underlying conditions.

As a result, anyone living with a health condition or disability has been forced to exercise extreme caution when it comes to COVID-19.

Healthcare access has also become more of an issue for many people during the pandemic, with so-called “nonurgent” appointments, surgeries, and treatments reportedly being delayed, with medical resources instead being diverted to handle COVID-19 cases.

The impact of missing appointments or having treatments postponed means that some people aren’t getting the support and care they might need.

I’ve experienced this firsthand. As a person with multiple sclerosis (MS), my day-to-day life has changed in unexpected ways in 2020.

Here’s how the pandemic has changed how I manage my MS, and what I’ve changed as a result.

Coping with treatment changes
Since being diagnosed with MS in 2014, I’ve been treated with the disease-modifying drug natalizumab, which is administered every 4 weeks via an IV infusion.

When first prescribed the drug, my MS was classed as “highly active,” but since starting treatment, I haven’t had any relapses and my condition hasn’t significantly worsened.

The fact that my medicine has effectively halted the progression of my MS is something I’m hugely grateful for.

When COVID-19 started to spread, hospitals were forced to divert their resources, and as a result, my treatment was delayed from every 4 weeks to every 8 weeks.

While this is deemed safe from a medical standpoint, my MS symptoms have worsened with the extended interval dosing. I’ve experienced more pain, muscle spasms in my legs, and mobility issues — none of which posed a significant issue for me prior to these changes.

Even though these symptoms are likely temporary, managing them has been a huge adjustment.


Managing pain at home
During the pandemic, my usual pain management techniques, such as extended rest periods and over-the-counter pain meds, stopped working.
At first I wondered if this was because my normal routine had been disrupted. It soon became clear that my pain was worsening as the period between my infusions lengthened.
Symptoms such as painful muscle spasms in my legs, mobility issues, and nerve pain in my arms started flaring up worse than ever.
My consultant suggested trying a different medication to manage my pain, and while I’ve yet to find something that works for me, I’m grateful to have an open dialogue with my healthcare provider about possible options to try next.
Some other things that have helped me manage my worsening symptoms during the pandemic include taking daily baths, using CBD, and making myself do gentle exercise even when I don’t feel like it.
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