MS Symptoms We Don’t Talk About…Like Sensory Pain

There are certain “off-the-books” problems and lesser known MS symptoms that we shy away from discussing, fearful that uttering their name might make them reappear. For me, sensory problems are particularly onerous. I previously wrote about trigeminal neuralgia, (a chronic pain condition that affects the trigeminal nerve that sends messages from your face to your brain), but there are a number of other lovely sensory–related symptoms that like to rear their head when I least expect it.

Numbness, tingling or burning sensations (paresthesia), diminished sense of taste (hypogeusia) and loss of taste (ageusia) seem to be rather unknown MS symptoms. Just like trigeminal neuralgia, these sensory problems can affect how you talk, how or what you eat, and how you sleep.

The small print tells us that paresthesia not only affects your face and rest of the body, but can also make some of our favourite physical activities lose their charm altogether. In my case, these symptoms have forced me to make major compromises in the activities I pursue such as hiking, cycling, and, to my disappointment and that of my ex, sex.

As with many “invisible” symptoms, it is difficult for those without MS to understand what we are experiencing. For example, explaining paresthesia to my ex was particularly challenging. He didn’t understand why seemingly innocent things like kissing and hugging felt like torture! As I wrote in a previous post, sexual dysfunction of this kind weighs on both partners, not just the one physically experiencing it.

While this may sound rather bleak, there are ways to deal with such symptoms. Making compromises, small and large, in how we live our lives, is a tough pill to swallow, but worth the price to keep some of these particularly obnoxious symptoms at bay.

How to cope

For me, I have to keep my stress levels in check or the wheels start to come off. My own facial pain gets worse when I am stressed, but with meditation and visualization I keep on giving it a place, preferably anywhere else but me. I also use a mantra to remind myself that I’m stronger than my illness. Mine is ‘mind over matter’, and I keep saying it to relax myself when need be.

If your mouth is affected, remove food from your diet that causes you most annoyance, and adapt your daily menu accordingly. Dark green, leafy and lightly cooked vegetables have been reported to have a positive impact on mouth numbness by some. Sucking on ice or frozen treats has been reported to help when your mouth is burning. But be careful with ice, as cold temperatures can jumpstart trigeminal neuralgia. Sometimes having MS feels like you continuously have to update your book of tricks, but given time, even those very annoying symptoms will become easier to handle. In fact, you might hear yourself think, ‘If only I knew this sooner!’

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Declan Groeger
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Declan Groeger

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