Editor’s note: Chronic pain can be one the most debilitating effects of MS. If you or someone you know is struggling, please know that there are many resources available for support including the National Suicide Prevention Lifeline (1-800-273-8255) and online chat, and the MSAA toll-free helpline (800-532-7667, extension 154) and online chat.
When I was first diagnosed with Multiple Sclerosis nearly two decades ago, I thought I knew a good bit about the disease and what it was capable of (I’d grown up with a grandfather who also suffered with the disease, so was more knowledgeable than most). Of the many varied potential symptoms that I knew were possible, one of the ones that I didn’t expect was pain. At the time, I’m pretty sure it wasn’t even considered a symptom of the disease. Science and medicine have now advanced enough to know what many people with the disease have long told them, that pain is a significant issue with MS. I’ve discussed pain in MS on many occasions; it’s a symptom that I deal with, to some extent, every single day. This article isn’t to cover all the specific types of pain or their causes, rather, this is about what living with chronic pain every day does to you (to me anyway). In short, pain changes you.
Burning leg pain and muscle spasms and tightness
Much of my pain is typically of a burning nerve variety, particularly in, but not limited to, my legs. Many days, it feels like my legs are on fire from the inside out. This sensation can last the entire day or it could come in spurts. Severity also varies; sometimes it seems unbearable, others, it is a thorn in my side annoyance that is just enough to allow me to never quite get comfortable. In addition to this fiery pain, I get spasms and tightness throughout my body. Not everyone may associate those sensations with pain. However, having muscles that expand and contract without you being able to control it is indeed painful. Think of a bad cramp or “charley horse”, that’s what I’m talking about. While burning and spasm/tightness pains are the worst for me, I tend to always have a variety of other indirect sources, too. I fall now and again, leading to a lot of hurt knees and rug burn. My coordination isn’t great, so I bang into a lot of things. This stuff seems minor, but it adds up and it’s consistent (I’ve written an entire article about wondering where all the bruises come from).
Yes, I’ve tried many things to manage my pain
This paragraph is here to tell you that I have explored options. I’ve tried many things. For me, gabapentin was like taking a sugar pill and marijuana is somewhat effective but expensive and hard to acquire. I currently utilize a combo of CBD oil and Cymbalta and still have pain, but not nearly as bad and debilitating as it was prior to that combo or when I weaned off of those two just to prove to myself that they were doing something. I’ve tried a whole lot more than that, too, so no need to suggest anything. And while taboo to admit it, yes, I’ll occasionally have a few drinks to help, and it does.
Effects of pain on my mood and relationships
It’s hard to say how I’ve changed from being in pain so much for so long. It’s been a gradual evolution of pain for me, which really didn’t start until I was maybe 13 or so years into the disease. It’s so difficult to understand how it’s changed me, not only because of the gradual but steady onslaught, but because it affects everything. Pain like this is so hard to get away from, getting good sleep is tough due to painsomnia, even relaxing on the couch can be difficult. It feels like my body is constantly under attack. Being in pain all of the time can have a massive effect on your mood. I’ve mentioned before how I can come off as angry or “short” with people, even when I’m not. It is no doubt a source of depression as well. Pain has even caused me to self harm. I’ve had moments when, even as a 40-plus-year-old man, it’s caused me to break down and cry uncontrollably. It’s led to problems with my friends, family, and many relationships. I have no doubt that being in pain every day has made me different than if I didn’t have it. It absolutely makes it hard to enjoy life and, on more than one occasion, had me questioning if I want to keep on going.
The cumulative effects of pain
All of this has had a cumulative effect on me that makes me sure that I’ve changed. I walk around feeling beat up. That said, it’s also made a lot of other issues in life seem not so bad, so I guess that’s a plus, right? Pain has helped me enjoy the little things more, I suppose that’s good. While there are many tough moments that my body has adapted to, it’s also adapted to be more appreciative of the smaller things in life (see, there is a positive in everything). While I may not know exactly how different I am because of chronic pain, I know enough to know that is has changed me. While it doesn’t affect everyone, pain can be a serious issue with MS. It’s an invisible symptom that can wreak havoc on your life and it shouldn’t be underestimated.
Thanks so much for reading and always feel free to share!