Inside MS: You’re Getting On My Last Nerve

Ah, nerve pain. How I wish your signals would crawl back into the depths of my brain and stay there … forever.

It has been a while since I wrote my last blog. I wish I could say that I have been busy with work and planning an epic bachelorette party for one of my best friends, but there’s more to it when explaining my absence from the blogosphere.

While I have been getting better with each passing month, there are still certain pains that came with my first official “relapse” that have not gone away.

According to the International Association for the Study of pain, “Pain in multiple sclerosis is both a direct consequence of a demyelinating lesion in the central nervous system (central neuropathic) or an indirect consequence of the disability associated with MS (nonneuropathic).” In other words, what I have experienced these last few years is literally all in my head … and lungs … and spine.

The first time I experienced pain was in 2012 when I had blurred vision in one eye. When I glanced left or right, moving my eyes side to side, I felt a dull pain. From looking at a brain MRI, the doctor diagnosed optic neuritis.

After months of prednisone treatments, my vision eventually cleared up (mostly). Although, to this day I don’t know if it was really the steroid or time that allowed my body to heal. But in October 2012, I experienced what I thought was thrush, an infection in my mouth . The best way I could describe it is I felt as though there was a jalapeño on my tongue 24/7. And nothing made it feel better.

I went to the dentist and the doctor, who both confirmed I did NOT have thrush. But what was it? Back then, we didn’t know. And although I think now that it was likely the result of one of my many lesions inside my body, I guess I can’t prove it retrospectively.

Fast-forward a few years to my diagnosis (September 2015), and that’s when I experienced many new pains: the MS Hug, pins and needles, and one pain that doesn’t really have a name.

I’ll go into more detail about these three particular pains another time. Honestly, sitting here after a long day of work and trying to blog is simply exhausting. I’m feeling the same way I felt recently boarding a Metra train to return home after an appointment in the city.

Struggling with chronic pain, I’m not at a point where I need a cane. But standing for long periods of time can be a challenge. Especially if it’s warm outside or warm inside on a crowded train. Then the pain is a bit more intense. At any rate, the train was getting full. Panicking about the thought of having to stand, in pain, for about an hour, I rushed to find a seat.

I must have looked crazy, half stumbling and sweating profusely. I got some side-eyes and heard some whispers after I finally found a seat and proceeded to rip off my winter layers, whip out a water bottle, and dampen a wad of Kleenex to cool myself off in an effort to bring my symptoms to a manageable level.

My point in telling this story is that the pain people with MS experience is insufficiently recognized. That happens when people are quietly suffering and you don’t always see what ails someone with MS. So, please remember these words I once read: Be kind, always. People are fighting a battle you know nothing about.

Photo courtesy http://nutritionw.com