Feel the Burn — of MS Neuropathic Pain!
Last updated: April 2023
I don’t know how many times during my pre-MS life I exercised to yet another workout video where the instructor needled me into holding a difficult pose and said, "Do you feel the burn?"
"Yesss," I’d hiss through clenched teeth, "can I relax now please?" The burning was my muscles giving me the high sign that they’re fatigued and producing lactic acid. It was all good, provided I stopped exercising and let my muscles recover.
My MS burning sensation
Ah, those were the days. Today, I don’t exercise to feel the burn. In my present condition, I’d fall over or sink to my knees before repetitive flexes could exhaust any muscle group. I’m challenged just getting out of my recliner and grabbing a can of diet soda from the refrigerator. I often feel burning, though, but not from repetitive exercise and not as a result of muscle fatigue. It’s the burn of neuropathic pain.
I feel challenged to describe this burning pain, but I’ll take a stab at it. I’ll start with a poem.
How I describe neuropathic pain
My apologies to Elizabeth Barrett Browning (1806-1861) for writing this parody of her sonnet 43: “How Do I Love Thee?”
How do I burn? Let me count the ways.
I burn to the depth and breadth and height
My shredded nerves can reach, when feeling out of sorts
From the persistent imbalance of being and lack of grace.
I burn despite every day’s
Most quiet needs, by sun and candle-light, dream and repose.
I burn as freely as people with MS pray for restoration.
I burn purely as they turn from their unanswered prayers.
I burn not with the passion put to use
In my old griefs, and with my childhood’s faith.
I burn with an intensity I seemed to lose
With my lost healthy self, when I burned only with love or anticipation.
I burn with a malady now, along with
Smiles, tears, of all my life; and, if Providence choose,
I shall burn not at all after death.
The torture of neuropathic pain
A malfunctioning brain can waste us with limitless tortures. But why do we have to burn so? It seems so Old World patriarchal, a throwback to the era of witch burnings. Burning at the stake symbolized the crucible in which one is purified. The end, it seems, justified the horrible means. The 12th-century monarch that tallied the most burnings, Pedro II of Aragon, explained it this way: “No pain, no gain, lady.” Or something like that.
What causes the burning sensations?
Sadly, our present-day burning pain cannot be spared either. Shredded myelin can no longer enable an uninterrupted current while the axons they protect try in vain to send complete signals. It’s much like a broken telegraph machine that garbles even the clearest Western Union telegram sent from the building next door. Not even Samuel Morse could rewire this puppy. The result is a scattershot Taser-spray of painful sensations. This dilemma is for future generations and their post-millennial hocus-pocus to solve.1
Feeling these comic book-like flaming arrows is just one problem. Describing them to someone that doesn’t experience them—including your neurologist—is quite another. Try speaking your burning sensations out loud to yourself and imagine posting them as burn notices, like the following:
Searing pain on my left thigh
I sat bolt upright in bed last night, wakened out of a deep sleep by pain. It felt as if a blow torch had seared my left thigh. I threw off the covers, convinced I’d see smoke and flames. But there were none. I examined the skin for redness and burn blisters. But it was normal.
Sounds totally sane and reasonable, don’t it? Yeah, not to me, either. I think I’ll keep that one to myself. How about this one:
Zaps and jolts down my arm
I’d spent the afternoon relaxing in my recliner when suddenly I felt a painful electrical shock hit a spot in front of my left shoulder and seem to burn a hole there the size of a charcoal briquette, then travel down my arm to the fingertips and keep zapping them so painfully that I gasped with every jolt. As if Tinkerbell had a tiny Taser gun and kept darting my index finger with it. Fairies can be so obnoxious when they get a new toy.
Uh-huh, I’ll keep that one under my hat, too.
What would your burn notices say? Do tell!
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: