Right behind fatigue, pain is a leading issue for people living with multiple sclerosis (MS). It is a constant that can affect every area of the body. It can have a devastating effect on the quality of life.
While pain is discussed and treated, it is important to think beyond the usual description of pain and to delve more into what a patient may, or may not, mean when they articulate how pain affects them. It would be easy to dismiss the idea that describing pain can be complex. After all, when you hurt, you hurt. Pain is pain. Pain is simple to define: Pain.
As a person with MS, I can say that not all pain is the same pain. I have become famous among my healthcare providers (HCPs) as a top-notch explainer. They have said that I can help them relate better to what I am feeling because of that ability. Other MS patients may not have that ability, so it is essential to listen to patients for the obvious clues along with those that are not so clear.
When I am experiencing pain, I usually put it into 2 different buckets: muscle and nerve. This is something I have found in common with other MS patients. For people like me with spasticity, it is easier to differentiate between the types of pain. That sudden instant stiffening is clearly muscle-related. I can feel the muscles in my arm going rigid and immobile. Touching those areas confirms any doubt. The muscle is as hard as a rock and at times visibly so.
With nerve pain, I have described it as similar to the feeling you get when you hit your funny bone. I have also used “ghosty” and hollow as words to explain that same sensation. It is a lighter, yet just as painful feeling as the muscle one. My HCPs appreciate the creativity. And I appreciate their interest in understanding my pain.
MS patients may be challenged to talk about what hurts. It is not just trying to share where there is pain, but explaining how it feels. We are questioned about how much pain there is and if it’s a little or a lot. Then it is a question of where the pain is located. How often it hurts might also be asked. That can pretty much be all the questions asked and answered before a pain medication is recommended and prescribed. Ending the questioning at this point misses an important opportunity to delve further into how pain is experienced and lived with. There is more to pain than what hurts. Pain does not exist in isolation and should not be treated as such. Pain is part of the MS life, but how it is handled should be personalized as other treatment options are.
Asking the right questions and reading between the lines can help patients get the relief they need. The 2 most common inquiries are about the location of the pain and its intensity. They might seem to be the best way to drill down to the basics. It’s either muscle or nerve pain and it is either a lot or little. The prescribed solutions are easily put in a specific area for each pain with a sliding scale related to how much pain medication to offer.
Pain is more complex than that for the people living with it. Is the muscle pain spasticity or it is fatigue? When is it more likely to happen? Does it hurt more on one side than another? Is it a sharp pain or is it dull? Does it throb? How is it affecting daily living? Is your current medication doing the trick? There are many more questions that can flesh out what is really going on.
Getting a patient to use unusual comparisons can help as well. Does the pain feel searing like burning a finger while cooking or is it more like being out in the sun too long? All of these questions narrow down the specific pain and in doing so, better helps the patient find relief.
Pain can be debilitating. For people living with MS, it is a dominant feature. It keeps us home. It prevents us from being a part of our communities. It takes away time and can be unbearable. Pain has been a constant companion for me. I can describe it well, but I was not accurately understanding the depth of it. I was living with a high amount of pain unnecessarily. I had no way of knowing that until my MS provider saw me in pain. She took the time to prod and ask the right questions. She was able to discern that I could be helped to live with a lot less pain. It was her questioning and probing that has allowed returning to some sort of normality. It was taking the time to understand my literal pain that made all the difference in the world.
Any MS patient could be me. Help them live better with pain by taking the extra steps and asking just a little bit more.