Willeke - "A rubber band tied around my arms and legs"

Willeke’s Patient Story

Willeke van Eeckhoutte

My pain feels like the sensation you get when a rubber band is tied around your upper arm when a nurse is taking bloods. My arms and legs can feel like this for hours on end. At other times, my neuropathic (nerve) pain translates into throbbing, itching or a dull kind of pain where the soles of my feet, my face or fingers feel rubbery. The worst pain - trigeminal neuralgia - feels like electricity being shot through my eyes, ears and face at regular intervals.

Life with chronic, neuropathic MS pain is challenging on most days. It takes continuous adaptation and avoidance of triggers that could ruin the rest of the day. Triggers for my facial pain might be a loud noise like children yelling, concerts or someone banging doors. Triggers for my other neuropathic pain are warm temperatures and severe tiredness from my MS.

Chronic pain has had a huge impact on my life over the past 11 years. Because of ongoing facial pain, quite often I can't finish a conversation without yelping in pain. I was diagnosed with MS in 2005, 2.5 years after moving to Ireland and had to retire from work 4 years after my diagnosis at the age of 36. Facial pain especially has forced me to ironically cancel doctors' appointments, hospital visits, but also meet-ups with family and friends on numerous occasions. It turns me into a hermit for days or weeks on end when the pain doesn't move on. I learned to bite through it and can now talk without the yelping, but the pain is most definitely there. In a way, however, it made me appreciate life a bit more because I have to fight to see its beauty.

Willeke writes a MS blog for MS Ireland. Her own blog is


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