Looking for Relief: Chronic Exertional Compartment Syndrome, Continuing Pain, Less Answers

Deciding to run a half-marathon in 2018 was probably the worst decision of my life. Not actually running it because I never got to that point, but deciding to and then training to had consequences I never could have imagined.

I’ve had three surgeries on my left leg since 2019, plus one on my right leg. If I had to guess, I would say I have seen six different doctors and four physical therapists, I’m not entirely sure. I know I’ve spent well over $10,000 (I really don’t want to know that actual figure.). Once I began Botox injections in my leg (who knew?) and finally felt relief, I thought I was finally getting my life back.

Then the pain started again, and at this point I’m at a loss of what to do. This might be a long read, but I’m hoping by sharing it maybe someone will know something. On Thursday, I actually threw up after I got home from my doctor’s appointment where I was told we’re running out of options and there’s nothing to do in the interim.

This pain is chronic and debilitating. I can’t walk ten minutes, maximum, without pain. Sitting in stadium seats or on benches is painful enough that I’m skipping a Kenny Cheney concert this weekend; tickets I bought in 2019!

Also in 2019, I was diagnosed with chronic exertional compartment syndrome (CECS);  that’s the villain here. The compartment syndrome I knew is the result of injury and is an emergency. This is not that.

Chronic exertional compartment syndrome is exercise-induced, a nerve condition, and causes pain, swelling, and sometimes disability in the leg or arm, as per the Mayo Clinic. It occurs most often in young adult runners and athletes. Symptoms include aching, burning, or cramping pain, tightness, numbness/tingling, weakness, swelling, and foot drop. I had several of these. The pain would begin consistently, and end with rest.

While the cause isn’t completely understood, basically the tissue surrounding the muscle doesn’t expand and that causes pressure to build up and then pain. It is underdiagnosed, but not considered common either. I know of exactly one other person who has had this diagnosis - a friend of a friend - and her experience was worse than mine.

The testing, however, for CECS is not pleasant so the doctor decided I should make an appointment, knowing it would be a few weeks, and try physical therapy in the meantime.

My physical therapist laughed at the idea it would be CECS because of how uncommon it is. But PT did nothing.

So began the rollercoaster of surgeries and physical therapy. First in April 2019 (both legs), then in September 2019 and December 2020 only on the left leg. After the initial surgery, it would seem like I was healing. I’d start PT, be doing well, and there seemed to be a point of no return where the pain would begin again, and the whole process would restart. I’ll spare the nitty gritty, but also in the mix of all of this I was tested for vascular issues that could mimic CECS.

After a knuckle dragging experience of trying to get insurance approval during which we actually tried another surgery because it just wasn’t getting approved and it was better than nothing, I started receiving Botox injections in my leg. Not a pleasant experience, but definitely on the lower end of the pain threshold in all of this. Weirdly felt like a rock was in my leg.

The relief was almost instantaneous. I’ve had three rounds of Botox. CECS had horribly disrupted my life. I missed out on so much because I had to be cognizant of how much walking  I could handle and if I could sit. I am a volunteer firefighter; I haven’t been able to do that since January 2019 when I experienced severe symptoms during a training.

Our drills are physically demanding. At this drill, I went in and had to go to the second floor. Rather stupidly, it hadn’t occurred to me that running up while wearing turnout gear and an air pack would because me problems even though I was already struggling running. The calf pain that resulted was unbearable. As soon as I finished and got outside, I went to sit down. My brother had to help me. Rest helped soothe the pain, but I needed my brother’s help again when I went to get up. I told him I wasn’t going to partake in any additional drills.

I spent the rest of the evening observing; the still-present pain in my leg and the weight of my SCBA on my back acting as constant reminders that something was definitely not right.

Later, getting ready to leave, I struggled pulling myself up into the fire truck. My leg began to cramp again. This made me feel worse than before. Not because of the pain, but because it was becoming evident that my leg may be worse than I had thought.

Once we got back to the station, I told my fire chief I was going out of service until my leg had healed from whatever the hell was going on. This was 2019. Although I’m still heavily involved on the administrative side, I can’t put into words how much I miss it. That is it own kind of ache.

Now, with the Botox, I was starting to heal. I was doing yoga and I was slowly - very slowly - starting activity again that included firefighting.

Whenever this damn stupid cycle of pain starts again, I feel like it continually gets worse. I have to be 100% here - I have no idea what happened, and I know what I do think happened sounds stupid.

I’ve always had wide calves. Like, I’ve had trouble getting my turnout boots off before depending on how sweaty and gross I was. In winter, I pretty much exclusively wear wide width boots, which are wide in both the shoe and calf. The pain started when I started wearing tennis shoes again as it started to get warmer.

It is the only common denominator I could find. I had already known not to wear anything compressive on my leg. One of the times while I was still feeling better, I wore Under Armour leggings as a layer for a late fall Penn State game and I started having the cramping pain again. I couldn’t figure out why I was having such pain suddenly, then when I took off the leggings the relief was almost instant. I don’t wear skinny jeans because of how my calf.

Now, all I pretty much wear are Vans, Crocs, and slides. I’ve dealt with plantar fasciitis in the past, and, after some extensive research, I bought a pair of tennis shoes that where supposed to be really supportive. I even made sure to buy them in wide. First time I wore them, I was walking from a parking garage across a medical facility. The cramping that I would get from running began pretty damn quickly. Waste of almost $200. It was so bad that when I got back to my car, I took my left shoe off, and, lo and behold, the pain began to lessen.

I am a writer, and a pretty damn decent one at that, and I cannot adequately explain the pain I have been going through.

When this all started, the pain began during running intervals of my run-walk training. As I started those running intervals - thirty seconds each - it soon became apparent that something wasn’t right. By the third running interval, I would get these awful cramping feelings in my leg. I would stop and stretch, I stretched more as a warm-up, I did a longer walk as a warm-up, and it just wouldn’t go away. There were times where it was so painful that I had to call to get picked up from wherever I was running because I could barely walk. Ironically, I signed up for the half because I wanted to get in better shape as a firefighter.

Now, at times, I have pain throughout my entire leg from my hip to my foot. My foot pain is typically on the top of my foot, and it is also pretty similar to cramping. I can’t even sit “normally” if I don’t have enough room. My best bet is if my leg is straight or slightly bent as if lying down. A wedge pillow that goes under my legs is one of the best things I’ve ever purchased; hard to sleep like that though. The ache is deep in the back of my calf. If I flex my foot upwards, the back of my calf feels like it does in the aftermath of a cramp.

Grocery shopping is difficult, although if I’m pushing (leaning) on a cart it can help. Walking from the parking lot to the store can be a bitch. And it just blows my mind how horrible my left leg feels while my right leg feels…normal.

A few days ago, I had serious thigh pain; I was almost in tears. It was worse when sitting or if anything was on my quad. My mom actually asked me if I wanted to go get it checked out because of the amount of pain I seemed to be in. And if anything, I’ve built up a decent pain tolerance over the last three years.  Heat and ice can also help.

I feel like I’m losing my freaking mind, but I’ve lost so much because of this problem. There’s plenty of times I haven’t gone out with friends because I knew it would be too much standing and walking.

My older and younger brothers were already firefighters with me, with my older brother being our captain. In the time I’ve been unable to respond, my youngest brother has joined as a junior firefighter. The four of us have never gotten to work together, it has never been the four of us on a crew for a call. It’s the Mikulan boys. The Mikulan brothers. It should be the Mikulan four. I should have been there. I was so angry that I wasn’t, that I didn’t have the chance to be there with my brothers.

I was - am - angry that this had been taken away from me.

I don’t know if I’ll ever get to gear up again. Like I said, I’m still involved but its not the same. It would never be.

And I was close this time. I thought I was only weeks away from starting to train again. Now, I’m back to not being able to stand.

Three years in, and I still don’t know how to do this. I don’t know how to live like this, and I don’t want to live in damn near constant pain. I miss running and riding my bike. I remember the one time I ran a nine minute mile. I miss going for walks and taking my dog out. I want to go hiking and shopping at outlets. My alma mater, Robert Morris University, is a series of serious hills. If I had had this problem then, I wouldn’t have been able to get around on campus. Walking from the dorms to the main building would have been near impossible.

I miss being able to go out and not worry about if I can sit or how long I’ll last. I miss pain not controlling my life.

Recently, I’ve had another Doppler and blood work to see if anything is wrong. Other than a B12 deficiency, its coming up short. I’m going for a MRI on my back. I was told there is nothing additional I can do in the interim to try and find pain relief.

I am desperate for relief. Probably about a year and a half or so into this, I would joke that I just needed a new leg or I’d be better off with only one. Sometimes, I worry if that is going to be the only way I find relief and can get my life back.

The Internet and social media can be a lot of things, but I’m hoping its helpfulness can emerge. I’m hoping that maybe there’s someone who will read this and think, I can help her. It is absolutely insane how much this has messed up my life. Any share would be greatly appreciated; never know who might be reading.