About 3 months ago I was diagnosed with Chronic Exertional Compartment Syndrome.
After years and years of living with an embarrassing condition where after any extended amount of walking would cause my legs to go into cramp, I finally got a proper diagnosis. Here is my story.
When I was younger, probably around 16, on occasion I would get cramp in both my legs, and the outside, just above my ankles. This would generally come on after walking, particularly walking up hill. This was a bit of a problem seeing I had to walk to college up a hill. Not every time, but every now and then. It would cause me some minor discomfort, and I never really thought anything of it. I also don’t recall telling many people about it.
This continued when I started University, and at the time, to get to Uni, I had quite a long walk from home to get there. One specific time I remember was coming home from University, and as I approached the bridge, I remember being in quite a lot of pain, and at the end of the bridge, had to stop and take a seat and was sat for a good 15-20 minutes before I could walk again. Again, I never really shared this with many people, and it was such a long time ago, I don’t recall what I was thinking.
This went on for many years, and I always avoided walking for long distances if I could help it. I was never very active anyway, not a sporty type, so I just got by with life. I lived very close to town, and every time I needed to go anywhere, it was never very far. During my adult life, my weight has fluctuated, but it never seemed to have a noticeable effect on my legs as quite often, the pain used to get worse after months of increased exercise which seemed to suggest the fitter I got, the worse my legs got.
In one of my jobs, I started to go for hour long walks at lunch time, and this lasted a few months before I had to knock it on the head due to pain. I became a dawdler, reducing my speed, and walking everywhere at a relatively slow pace to avoid the onset of cramps.
It was around 2008 that I decided to go to the Doctors about it and it was originally thought to be something like Intermittent Claudication (a circulatory problem). I underwent various blood pressure tests, muscle tests (nasty long needles inserted into my leg muscles) and it all came back okay. Then I was referred to see a spinal specialist for some further investigations. This concluded in a Spinal Nerve Block to see if it would relieve the pain. This it did not, so I was back to square one. The consultant sent a letter back to the Doctors stating that could be something like Chronic Compartment Syndrome, but they did not have the appropriate tests to determine if this was the case, and that if the GP wanted to pursue it, then they could.
I never bothered (and they didn’t either) to follow this up and decided to just live with it.
Fast forward to 2016, and my problem still was an issue, steadily getting worse. My exercise levels dropped significantly as I worked from home, and it became increasingly difficult to go for walks as even a short walk to the local shops was enough to give me agonising pains.
Then in the Summer of 2016, I had a particularly embarrassing situation where I found myself in Manchester with some work colleagues, and due to the Trams being off, I had to walk across Manchester, a fair distance, in the scorching heat, with a heavy laptop bag. Suffice to say, this nearly killed me, and I was so embarrassed as I was limping, sweating and in a right state. That event knocked me off my feet for weeks and weeks after, and I was severely crippled.
So, back to the Doctors I went, with the Consultant letters from 2009 in my hand. I explained my situation, showed the letters and got myself referred to a lower limb specialist. It’s also worth noting that between 2008 and now, I was also diagnosed with Psoriatic arthritis and was in medication for my Psoriasis, arthritis and had occasional Physio.