What Does MS Pain Feel Like Exactly?
Last Monday morning, I awoke to gripping shocks of pain raging through both of my legs. My eyes flew open, completely blurry in a dazed, ferocious stupor of agony. My leg muscles felt as if they were ripping themselves apart. I tried to move my feet under the covers. That slight motion caused my toes to feel like they had literally curled under, around themselves. I looked down through uncontrollable screams and tears, pulling the covers back as I did. My toes were indeed, curled under themselves.
My feet were also contorted, bent outward, reaching up toward my ankles. Remember the Wicked Witch of the West’s sister? The one Dorothy’s house dropped on at the beginning of the Wizard of Oz? Her legs coiled up, feet first until they disappeared. Those were my legs.
I didn’t know before that moment that my limbs could do what they were doing. The searing pain flipped me off from any sense of space or time. I was in La-La land and not the fun kind. I had no idea what to do to help myself.
What MS Pain Feels Like
Alone in the house, hearing myself scream and cry out, I realized how vulnerable I was in my current state. I had no way to get out of bed, aside from rolling off and hitting the floor, two feet below. Meanwhile, every single move I made led to another violent twisting and tightening of sinew. In an even stranger insult to the injury I was then receiving, the skin on my legs started to suck in and contort around my calf muscles. There was no reference to this in my head, no point of reason. I felt as if I’d go insane with pain.
My thoughts were choppy and disconnected. I thought again about dropping to the floor. I could get to my phone. If I got to my phone, I could call an ambulance. What on earth would ambulance techs be able to do? Nothing I supposed. Not really. Besides, by the time I get to the ER, wait three hours to see someone and be charged hundreds of dollars, the pain could subside.
It's not like I don't know what the cause is here. Oh, I know the cause. We all do. Wait, do I? This is a brain thing, it’s not physical, not really, right? Wait, is it physically my legs creating this torture or is my brain doing this?
In the middle of my freak-out for a good reason, I was also shorting myself of air. I was gasping, losing control of my breath as I was losing control of my thoughts. Then I recognized this and recalled my old bouts with exercise-induced asthma, and I had learned how not to exacerbate these attacks back when I was a runner. I knew that ramping up with any kind of upset would lead to increased heart rate, hyperventilation or worse. Ok, ok, so work with this I thought. Breathe; let the pain flow, release the tension by relaxing the entire body. Let my legs relax.
Big mistake. Easing into the pain led to more ripples of pain and contortions of toes and calf muscles all over again. Relaxing into the situation knotted me up even more. Holy cow this was a conundrum. What the hell do I do? Nothing like this had ever been addressed in the happy smiling face, So You Have MS manual.
Time went by – Maybe an hour, maybe two – or more. I was exhausted, afraid to move even a millimeter and had no idea where to go in my mind. I had hit a milestone of gnarliness. All I could think to do was to apply a light touch and be patient with the whole process. I wondered if this were indeed an actual new process I’d have to endure from now on.
Over time, the pain began to release its death grip on my legs. I attempted to put my feet on the ground. My legs replied with a stern order. They said, "Absolutely not." A bit later, I placed my feet carefully back on the floor and again gave them some weight. My left leg collapsed under the test. My right leg offered support but not much.
I got to the bathroom with a great deal of help from my furniture and a very narrow hallway. This was not an elegant display of poise and grace, but it did the job at least. All I wanted was to get back to my bed. I felt I had chanced fate enough for a time.
After two days of hobbling, I could again feel most of what was going on below my knees. Wow, what a weird feeling though. My calves were a sandwich of unbelievably exhausted muscle wrapped in a blanket of numbed out, Novocain injected blubber.
This cramping in my legs had happened before, just not nearly to this extent and not both at once. Cramping in my legs had also been happening more and more often lately. I chalked it off to vitamin deficiency or a bit of dehydration perhaps. This now, this was a whole other volume on intensity.
I wondered, is this spasticity? I read that thirty to eighty percent of MSers deal with spasticity, involuntary muscle spasms. Then I realized from experiencing this whole new level of pain that it is time to get back to my neurologist.
Pain Is a Part of MS
These are the things we go through as MSers. We go to bed feeling just fine, and we sometimes wake up in indescribable hell. There is no rhyme or reason to any of it. At least we know, someone out there has experienced something similar. We are not alone. We will find ways to cope and methods to alleviate as much as we can.