15 Years and Not One Day Without Pain: Living With Glossopharyngeal Neuralgia

Andrea Jenkyns is a member of the British Parliament and new mother. She was elected as the Conservative Member of Parliament for Morley and Outwood at the 2015 general election. Read more about her story here.
Jenkyns has fibromyalgia, which is a long-term disease that causes pain all over her body. She also has glossopharyngeal neuralgia (GPN), which is comparable to trigeminal neuralgia. Trigeminal neuralgia has been called “the suicide disease,” because the pain is one of the worse pains that can ever be experienced.

Jenkyns states, “In the last 15 years I can’t remember a day without pain.”

Recently Jenkyns opened up and talked about her rare disease and how it affects her every day life, career, and life as a mom. She wants to speak out to raise awareness and encourage researchers to find a cure.

Although Jenkyns has had these conditions for a long time and cannot remember a day in the past fifteen years when she was not in pain, she has decided that she will just, “get on with things.”

GPN attacks the nerves around the ears and throats and causes excruciating pain.

Jenkyns describes the pain as having your throat slit and even the slightest movement or even trying to walk can be excruciating. A GPN attack has lasted her anywhere from five minutes to a staggering three days. These attacks are worse than her fibromyalgia, but only come every three months or so.

Jenkyns’ GPN even caused her to “fluff her lines” once at a Prime Minister Questions when she was first elected. She had just gotten over an attack that was stirred up by her hairdresser brushing her ear that morning before she got on stage. After an attack, Jenkyns says she is usually light-headed and not as mentally sharp, and she messed up her lines when asked about immigration. The audience was still wild about her however, despite her embarrassment.

While Jenkyns’ GPN has affected her work, she says her constant fibromyalgia does not.

As a Member of Parliament, Jenkyns has the type of job where she has to be very alert mentally and therefore does not take any medicine for her pain.

Jenkyns says medicine makes her groggy and she has learned to manage her condition without it, although she admits she is exhausted by the time night rolls around and can only manage about 3 or 4 hours of sleep before starting the next day all over again.

Jenkyns refuses to complain, stating that others have it much worse. Her sister, for instance, has MS and is slowly going blind.

She also had a baby last year and finds that her condition is harder to manage when she is juggling another role in her life as a new mother.

She admits she will have to try to listen to her body more and pace herself and not just go full steam ahead in managing her condition.


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