I’ve been writing about my journey with multiple sclerosis for a while now. I’ve discussed a wide range of issues that I’ve dealt with over my many years with the disease. I have, however, held off on devoting an entire article to one of my worst symptoms until now. While I’ve made mention of it before, chronic MS-related pain is a symptom that I encounter every single day. It’s one that is hard to find relief from and it’s one that I know has a profound impact on who I am. For good and for bad, chronic pain can change you.
When I was diagnosed some 17 years ago, I had no idea that pain could even be an issue with MS. Despite having a grandfather with MS, I found I was naive about a lot of the issues that can come with MS. As far as pain was concerned, I figured that most pain would come from the number of falls I’d take. I also didn’t start out with pain as a symptom, not until about 14 years diagnosed did I really start to suffer from it. And suffer I have; I never expected the kind of intense pain that seemed to suddenly appear out of nowhere. It’s as if someone has a voodoo doll of me somewhere and is really working it over with an assortment of torture devices.
I keep saying “pain” without really explaining it; I feel many of my colleagues have done a great job talking about pain in the past, so I don’t want to simply rehash what’s been said. I’ve also talked before about my issues sleeping with pain (what I like to call Painsomnia). With MS, pain can really encompass a number of things: Trigeminal Neuralgia (a stabbing pain in the face), the MS Hug (a tight, constricting pain in stomach and sometimes chest area), Lhermitte’s sign (an electric shock type sensation up your spine when you tilt your head down), Spasticity, Paresthesia (numbness and tingling), and Dysesthesia (burning, stabbing, or tearing pain). Now that we’ve gotten some official and crazy looking words out of the way, I’ll tell you that my personal experience deals mostly with the last three of those. I’ve already done a full post on spasticity, so I’ll try not to go into too much more about that. In addition to that spasticity, I am plagued by numbness/tingling sensations and brutal burning and stabbing pain.
I routinely have the entire right side of my body feel numb (sometimes just a leg or arm or hand or even face). It could last an hour or it could last an entire day. Often, it feels the same way your arm feels if you’ve slept on it wrong. Imagine having that feeling for an entire day and having it be an entire side of your body. It’s not pleasant. Being comfortable at all can be difficult. It also has a big effect on pretty much any activity I do. I’m more likely to fall because my leg won’t be moving right (or I can’t feel that it’s moving right). I’ll often drop things because my hand will be numb. I can’t even begin to tell you how many things I’ve broken because I’ve tried picking something up with my numb hand or worse, had the numbness suddenly come on while holding something breakable. Between the falling and my hands giving out, every time I carry a glass or a dish of food or anything spillable/breakable, my wife looks toward me with concern and usually offers to help. Most of the time it’s needed, but I’m also an extremely stubborn person so I inevitably still end up spilling or breaking something.
Perhaps the most agonizing symptom I have is the burning and stabbing sensations. I am thankful not everyone with MS gets these, because it really does feel like a punishment being handed down for some terrible thing I’ve done in my past. Primarily affecting my legs (though occasionally my arms will be hit as well) most of the time, it feels like I am burning from the inside out. Some days it’s a mild burn or even just achiness, but many other times it’s an intense searing pain. I feel like I’m being burned at the stake at times. It can last from minutes to even a full day. It’s just awful, there’s no word that truly can explain how awful it is. I’ve had my share of pains in my life. I’ve suffered numerous broken bones (including breaking my hand/fingers at least eight times), several bad cuts (at least one right to the bone), torn a hamstring, absorbed some vicious hits in football and hockey, a couple of concussions, torn my meniscus, chipped a bone in my knee, a bad bout of meningitis, a severe burn that resulted in hospital time, and have had some pretty bad falls from MS (one recent one through a glass window). I like to think I have a good pain tolerance, but nothing has really compared to this burning sensation I get now. It’s a level of pain I never imagined existed and I now deal with it on a daily basis.
In addition to all that, I will also occasionally get a quick, sharp, electrical shock-like pain that comes and goes out of nowhere. We’ll be on the couch watching TV and I’ll yell out because it comes on so unexpectedly. Even if it’s just my wife with me, I still feel a tad embarrassed for letting out a yelp like that, but I can’t help it because it’s so sudden. I will also occasionally experience some sensitivity to my skin, where if you touch me, it hurts.
Having these pains and sensations day in and day out can have a profound effect on a person. I know it’s changed me, even if I’m not entirely sure how. Obviously it can cause some moodiness and even some anger. I often feel like I’m being punished. I never felt that way about MS until I started having really bad pain, so I find myself wondering what I did, even though I know that’s not logical. Consistent pain can really mess with your head. At times, it’s hard to think clearly (add to that MS Cog Fog and as a former engineer, I feel pretty useless). There are many moments when I just sort of “check out” on whatever is going on around me. I’ll be in a daze because my mind is consumed with trying to understand and deal with the sensations my body is experiencing. All of it is made even worse because it’s invisible to everyone else. You end up living with this fear of skepticism, this concern that your friends, family, and even doctors may not believe you. If they can’t see it and they haven’t experienced it, they will never truly understand. That’s a tough thing to deal with and probably why I have such a connection to others I meet who also have MS.
Can there be a good thing that comes with having to deal with pain so much? I’m not sure. I do appreciate things more. My wife will rub my legs (which helps a bit with my spasticity) and I swear every time she does it, it feels like the best thing I’ve ever felt. So any sort of good sensation or kind of relief at all feels even better to me. I’m much better at acting too, since I think I( do a pretty good job of not showing how much pain I really am in most of the time. I suppose I like to think it’s all made me a stronger person too (though at times, I feel weak when I bring up my pain).
I’ve already written a lot here so I’ll tackle my experiences with trying to treat pain in a future article. Thank you all for reading. If you don’t have MS, please consider all this for those that do and always remember that just because you can’t see someones demons, doesn’t mean they are battling hard against them. If you do have MS, I’d love to see some comments about your pain experiences.