Spazzing Out

There are many things that make living with a spinal cord injury a challenge, but having muscle spasms, specifically muscle spasms in my legs, is near the top of my list of the most annoying things about this lifestyle. The reason for this is that unlike a litany of other SCI related issues that I only really have to deal with once a day/more infrequently, like assistance with personal cares, lack of building access, equipment failures (e.g. wheelchair, van), etc., for me leg spasms occur every day, multiple times a day, and depending on the day they can occur multiple times an hour too, so they are a constant nuisance. They range from mild tremors that just give my leg a slight wiggle to violent ones that make my legs bounce up and down in place or possibly even knock me sideways or backwards in my wheelchair, depending on the daily circumstances.

Having frequent muscle spasms is a very common yet somewhat hidden aspect of living with SCI, and people who aren’t “in the know” often aren’t sure what to think when they witness them. One friend thought I was playing a trick on him before I enlightened him. Because I am paralyzed from the chest down it doesn’t mean that all of my muscles are lifeless, it’s just that the signals that go from my brain to the muscles that I want to move on command don’t travel past the injured part of my spinal cord. As for the mechanics of muscle spasms with SCI, what I’ve been told over the years from doctors and therapists about how muscles work is that they both contract and extend. The body has a natural tendency to contract but muscle extension takes a much more voluntary effort. So even though voluntary muscle extension goes out the window when paralysis is factored in, the muscle’s natural tendency to contract still remains, and thus muscle spasms strike.

Once upon a time back when I was in rehab at Craig Hospital the only time of the day that I had muscle spasms in my legs was in the morning when I got rolled from my side to my back, which caused my legs to shake around for a few seconds and that was pretty much it for the whole day. As the years went by my leg spasms slowly but progressively increased in both strength and frequency. Flash forward to the present and my muscle spasms are still at their worst first thing in the morning after rolling onto my back in bed, but they’re much more prolonged and violent, often bouncing around for up to 20 seconds. It always takes a handful of reps of my PCA doing range of motion on my legs before they stop going into a tizzy every time they’re touched.

But the biggest difference between then and now is that the spasm train keeps on chugging throughout the rest of the day. Most of my leg spasms occur as a result of changes in my body positioning. So if someone lifts my leg off my wheelchair foot plate to take off my shoe then my legs are likely to kick back a bit. It’s always interesting when people tell me to “relax” or say “you’re ok” when that happens at doctor appointments, etc. not realizing that it’s entirely involuntary. Hand in hand with that it seems like the biggest trigger point for my leg spasms is any motion that stems from the trunk region of my body. So when I lean forward, to the side, lift myself up from my chair to do weight shifts, or even sneeze it very frequently gets my legs going. And I do those motions countless times every day to do things like reach above my head to grab something from a cupboard or lean forward or to the side to pick something up. When they’re real bad I feel like a rodeo bull rider because I just hang on for about 8 seconds until it’s over. Moreover, it often feels like I’m waging a perpetual me versus them battle, and I find myself saying things like “Knock it off you guys!”

And how they always seem to strike when I want them to the least is the worst aspect about having muscle spasms in my legs. This is most frustrating when I’m executing a delicate balance of carrying things like groceries, office papers, or even hot soup and a sandwich on my lap and a leg spasm kicks in causing things to fall or make a mess. It can also be embarrassing in social settings in that regard. For example, there have been times where the act of leaning slightly forward to reach out and shake someone’s hand has triggered something. Going all Lord of The Seated Dance certainly makes for an interesting first impression. Related, there have been plenty of other times where the act of reaching up to grab a drink someone’s handed me at a bar has kicked in a leg spasm, which has caused me to either drop the drink or spill on myself. Those situations aren’t fun. By far the worst leg spasm situation is when they strike while I’m driving my van because sometimes they can interfere with me controlling the vehicle until they subside.

The frequency or strength of my leg spasms varies day to day depending on many factors. When I sleep in they’re better than when I get up really early. For whatever reason days that I do my morning shower and toilet routine results in far less leg spasms than days I don’t. My leg spasms are always better on mornings that I have a full range of motion done on my legs at the start of my day than when I don’t have time for it. They are usually much more manageable on days that I’ve been able to stand in my EasyStand stander as well. Most interestingly, I have little to no leg spasms when I am sick, have a UTI, a catheter gets plugged, or whenever my body is dealing with some other similar form of “trauma.” It adds a positive silver lining to getting sick.

As for muscle spasm management, it all starts with medication. I take baclofen as my primary anti-spasm medication. I’ve increased my dosage bit by bit over the years depending on the frequency of my spasms. Unfortunately, after requesting another increase a few summers ago I was told that I had reached the maximum doctor recommended daily dosage of baclofen, so that was frustrating. But a few years ago I was prescribed a second muscle relaxer to take at night that combated a spasm in my left big toe that was keeping me up at night, so between the two I’ve struck a pretty decent leg spasm management balance. If I know I’m going out then I take an extra pill just to help stave them off and reduce some awkwardness. I can usually sense them coming on too so I can play a bit of offense, if you will, and brace myself to maintain a little control over them. If they get really consistently bad I could get a baclofen pump, which is an implantable device about the size of a hockey puck that pumps medication directly into your spinal cord via a tube. I’ve heard good things about it, but because I don’t have a “baclofen failure” of drowsiness, cold sweats, headaches, etc. (common side effects) and/or sustainable, crippling muscle spasms then I still consider the pump too invasive for me.

So muscle spasms are very frustrating to deal with but manageable with medication and patience. The biggest positive of muscle spasms? That they keep good muscle tone in the legs so mine still look normal despite 15 years of paralysis.

Photo courtesy of sarah may scott

Do you experience frequent muscle spasms? How do you manage them?