All Pain, All Day
Last updated: October 2023
Chronic pain is often a part of living with multiple sclerosis (MS). Much has been written about pain. People living with MS (PLwMS) write from the perspective of experiencing pain and how it affects our lives. Healthcare providers (HCPs) tend to look at pain from the point of view of helping PLwMS. Researchers are interested in pain from a causation and prevention side.
These are generalities, but they are meant to reflect the various ways in which pain is addressed by a few MS stakeholders. Caregivers, suppliers, pharmaceutical companies. All have a dog in the fight against chronic pain.
Those living with pain are not alone
The topic of pain is one that I take very personally. As I'm sure the 50-75% of PLwMS who experience chronic pain do as well.1
I am not super special and my pain is not special either. However, I am part of that subset of people living with MS who experience chronic pain from morning to night. A new health diagnosis has only added to that list.
Forever and ever and ever
With apologies to Dionne Warwick and Burt Bacharach, in the morning when I wake up, before I put on my makeup, I say a little prayer for my body. It could be for my MS in general, but instead I pray for the pain to which I woke up. From the moment I open my eyes, I am in pain. It is usually related to my arms - their spasticity. This is the throbbing pain and pulling at my shoulder joints and stiffness. It's followed by my back and then everything else seems to follow.
I have written about living with pain. I say "living with pain" because it is part of how I have chosen to deal with it, now that the pain only abates when I am sleeping. I am fortunate enough to not be awakened with it regularly. The pain that starts in the morning keeps up throughout the day. It is a constant physical feeling that is in the background. It could be multiple sources or one, at any point in time something hurts. What has changed for me is the acknowledgment that this pain is going nowhere. Nowhere at all.
Begrudging acceptance of my pain
Ever since pain became a regular part of my existence, I have not thought about the permanent nature of it. It is not as if I was under the impression that my MS symptoms were going away. The multiple medications I take at least twice a day are a reminder of the fact that, without them, I would be most likely be curled up in a fetal position. But the dawn to dusk part was not a part of the equation I agreed to.
Opening my eyes to pain, changed how I viewed my pain. Slowly but surely, it sank in that the chronic pain I live with was not going to get better...at all. Which is the definition of chronic. The Pollyanna denials fell to the wayside as I began to notice the pain more, because I took it to heart that this was it. Apparently, a tiny bubble of hope held steady all of this time. My hope of a less painful life was not to be.
I do not know what the future plans for me. I do not know if the pain will hold steady or grow worse. I have accepted that it is not going to lessen and that in the morning when I wake up, I am going to say a little prayer for me.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: