charcot marie foot

"Symptoms, then are in reality nothing but the cry from suffering organs"
-Dr. Jean Martin Charcot

Ever since I can remember I've suffered from mid-sleep charlie horses. If you're not familiar with the term, I get cramps in my calves while I'm asleep. Yes, I said while I'm asleep. In complete and total pain is a very jarring way to wake up.

So you can imagine my surprise when, halfway through my very first marathon, both my calves started actively cramping. Calf and foot cramps, until that point, had been reserved for laying down and/or sleeping. But instead I found myself running (for over two hours) through the active cramping in my lower legs. When I finally finished the race, medics put ice bags on my calves. While that helped relieve the pain a bit, removing the ice resulted in two of the worst cramps of my life; charlie horses so painful I dropped to the ground, screaming and swearing uncontrollably and scaring the medics who had circled around me and my family. All I could think was, "I haven't had a calf cramp this bad since I was fifteen years old." And I probably hadn't.

Running a marathon (and smiling) while my legs are actively cramping

If you've never suffered from a calf cramp (or in my case, many many calf cramps), you are lucky. They are painful. I'm never sure when they'll start, I do not know how best to ease them, and I absolutely do not know how to prevent them.

I wasn't the only person in my household with this mysterious midnight pain. My brother also suffered from mid-sleep calf cramps (and was the one who first used the term "Charley horse" and taught me its meaning). Most of my memories of Dave's calf cramps were during his high school years. Despite being two and a half years younger than Dave, we would both suffer leg pain at the same time, often during the same night. While I would always choose to instantly grab my leg (or legs) and try to massage out the cramp, Dave chose another treatment; he'd try to stomp them out. Dave would suddenly jump out of bed and start stomping down on his leg. Once he was satisfied he'd gotten the cramp out, he'd fall right back onto his bed and into sleep. The number of times I woke up to the sound of Dave stomping his leg are too numerous to count. It was a typical occurrence in our home.

And clearly I still continue to get these cramps. What's interesting to me it that there is very little known about WHY I get searing pain in my calf muscles that wake me up. I have been told about any number of possible causes of my distress, but none of them make any sense. Everyone seems to offer up an unsolicited solutions to this problem. First up, lack of potassium. Sorry friends, but I am absolutely 100% not potassium deficient. It's not the culprit. Trust me; I have my potassium level checked every six months (an unrelated concern). More potassium will not eliminate my cramps; I could eat all the bananas in the world and not get better.

The suggestion that dehydration is to blame for my charlie horses is much more believable. I don't drink enough. I try, especially with all the running I do. But I am always thirsty, most especially in the middle of the night. So I drink a lot. And I pee a lot. And I drink a lot more. But I never feel hydrated.

During my post-marathon calf cramp fit, my mom offered up some life changing information; calf and foot cramping is a symptom of Charcot Marie Tooth disease. Charcot Marie Tooth (CMT) comprises a group of disorders passed down through families that affect the nerves outside the brain and spine; aka the peripheral nerves. I know, it's an odd name for a foot disease (actually it's foot and hand). But it's named after the three doctors (Charcot, Marie, and Tooth) who discovered it. Several members of my family suffer from CMTX, the x-linked form of the disease.

After the marathon I had truly reached my breaking point. My feet had been hurting so bad for so long I had to finally see a podiatrist. Four days later I had the official diagnosis; I have Charcot Marie Tooth. I wish I could say I'm not devastated. But I am. Why else would I have avoided the podiatrist for twenty years? Up until last week I had still hoped I'd hear, "new shoes will fix your chronic foot pain." But they won't. Foot pain is a part of me. Most of the people close to me know my feet hurt every single day. Some days I run with the pain. Other days I run through the pain. But most of the time, I run despite the pain.

Packing for a marathon includes lots of 2nd skin bandages

So what does this mean for a (now official) marathoner? Of course I had to ask my doctor about the running. Would I have to give it up? The short answer is no. With lots of orthotics. And maybe surgery. But first orthotics, lots and lots of orthotics. And new shoes. And stretches. And special exercises. And the frozen water bottle under the foot trick that I promise alleviates plantar fasciitis.

Many people prefer to keep their CMT on the down low. In their defense, the symptoms can become very dehabilitating, especially for men. But I'm putting it out there; I am a marathon runner with CMT. Because I want you to know. And to understand. If we're out walking together, I'd like you to slow down. And when we're out on a hike, the pain might become so unbearable for me we have to either stop for a while or immediately turn back. But the pain won't stop me. I will continue to go out and run. And maybe even hike once and a while. And maybe, just maybe, someday I'll run another marathon. After all, "few things in life match the thrill of a marathon." (Fred Lebow, runner and founder of the NYC Marathon). Mr. Lebow, I completely agree.

I'm already thinking about my next marathon...