Chronic dreams of feet amputation.

As I put one foot in front of another, my heart beat faster and I stiffened as my feet, ankles and calves started to burn. I could feel sweat on the back of my neck and a drone in my head that said ‘just keep walking, just ignore the pain and keep walking’. I counted trees, trash cans, parked cars, markers that would delineate that I was closer to where I needed to be. I started to stagger, and tried to concentrate on the swinging of my arms. Anything, anything but the burning feeling.

But it got worse, and I started to feel sick. Against my best efforts, my feet spoke for themselves and pulled to a stop. I had walked less than 20 metres. My husband sighed impatiently and glared at me ‘C’mon, we’ve only just started, we’ve got a lot to do today and you are too bloody slow-again’.

I can’t remember the first time I felt the pain, it was like growing a lower limb that grew as naturally as hair or nails. Whenever I walked, lunged, stretched or stepped, it was there, like my shadow, taunting me as I took a step. I try to think of a time when I was without pain when walking and I cannot.

I have two descriptions that best describe the pain. The first is severe burning. Burning like a serious burn, not a splash of water from the kettle, that goes deep, and strong and lasts. The second description is a severe ache, the closest thing I could imagine it to would be if you tried to walk using the tops of your feet instead of the bottoms. It wasn’t a throbbing or stabbing pain but was very, very unpleasant and at times excruciating.

I often got asked what alleviated my pain. The only thing was not walking at all or standing for two long. Not as easy as it sounds, I was a teacher of workshops, which involved travel to each venue and then standing in front of a class. I attempted to do what all people practice by instinct, avoid situations that cause pain. But gosh it’s hard to do. If I could get a train or tram (even for two stops), sometimes I would).

When walking anywhere, ever for short distances, I would have to stop frequently, standing on one foot then the other, trying to give each foot a brief, if ineffectual respite from the pain. Walking anywhere with others was horrendous. I knew other people’s definitions of ‘close by’, ‘five minutes walk’ and ‘not far’ were very different to my own. I’d create all kinds of excuses for stopping whilst walking, like looking at a plant in someone’s garden, checking my phone or looking for a tissue in the my bag, anything to slightly quieten the pain for even seconds.

I’ve read about the idea of a pain barrier, and notion that you can push through chronic pain to be in a place where it you could no longer feel it (something my husband espoused). But in over 20 years of trying, I never once experienced it. Often I just gritted my teeth through the pain and soldiered on, step after painful step. I discovered years later that this actually may have caused further damage as other parts of my feet overcompensated and as I clawed by way to where I needed to go, step by step.

Over the years, I went from doctor to sports doctor to podiatrist, a compendium of expensive referrals that involved the consensus that I had very difficult feet, very stiff calves and achillies, and yes, most certainly it was very hard to treat. I undertook MRIs and x-rays. Treatment options ranged from stretches (done several times daily) to Botox injections to custom orthodics (I’ve had six pairs, each averaging about $900 each). I was often told that being overweight was the cause of the condition even though I’d had it when thin and fat and it was exactly the same. But yes, I comfort ate, binged and drank in my despair. Several doctors began to suggest I needed to go for a jog to lose weight, then stopped, as their brain remembered that I had a very painful condition which made this as achieveable as me being a concert pianist. I tried swimming and bike riding but the burning was still there.

I tried lower leg massage twice, it was akin to torture, the first time I almost crawled home, the second I rushed to the toilet to throw up, the pain was so bad. I can hear you thinking, no pain, no gain right? Have you ever screamed in pain getting a massage? Very embarrassing. At times I cried, I often despaired as the pain got in the way of so many things. A simple stroll to the shops, going dancing with my friends at a club without the thick anaesthetic of alcohol, rushing for a nearly departing train. It was debilitating but not enough to be a chronic disability as of course, the pain only occurred when I walked, cycled, jumped or attempted yoga or exercises like lunges.

I used to fantasise about having my legs cut off from below the knee, anything to end the pain. At times I dreamt about waking up without feet and feeling nothing but relief.

In early 2013 I went to yet another podiatrist and I saw a student doctor doing her clinical placement. She listened to my symptoms, examined my legs and said she thought I might have something called Chronic Exertional Compartment Syndrome. But to be diagnosed and treated, she’d need to refer me to a sports doctor, who could give me a referral for a pressure test to determine once and for all the cause of the pain.

I have never been, and still am not, an athlete. I visited the sports clinician with some trepidation. His surgery was emblazoned with photographs of football teams he had trained. Pennants and banners decorated his room. When I explained my leg condition at length, and requested a pressure test, his chest puffed up like a pigeon. ‘In 20 years I’ve only referred two people to those. You need to go to Weight Watchers, you’re too fat’. Yes, it was another typical medical appointment. Feeling powerless to protest, I signed on the Weight Watchers, even though I wasn’t thrilled at the idea. I’d been through the program twice as a teenager as developed bulimia as a result. I lost 5 kilos but the pain never went. I felt very discouraged.

On a friend’s advice, I went to see yet another podiatrist who specialised in chronic foot pain. She tried another pair of orthodics first (seriously do they get a kick back for these?) and noticed that my toes had become clawed from the pain and gait problems. I was diagnosed with plantar fascitis in my right foot ( a sensation akin to stepping on nails, which compared to my leg pain, was nothing). She referred me to a vascular surgeon.

The surgeon determined that I definitely had Chronic Exertional Compartment Syndrome. In simple terms, this is a condition where pressure builds up within an isolated segment of muscle (a muscle compartment).

Each leg has four compartments. Exercise increases the blood supply to working muscles, making them expand. The muscles are surrounded by a band of fascia to hold everything in place. Because the fascia does not stretch, this can cause increased pressure on the capillaries, nerves, and muscles in the compartment. Blood flow to muscle and nerve cells is disrupted. Without a steady supply of oxygen and nutrients, nerve and muscle cells can be damaged. This condition is mostly commonly diagnosed in serious runners and athletes, one of the reasons it took so long to be diagnosed: being 5 ft 3 and podgy, I was never an athlete in anyone’s eyes

I had a bilateral fasciotomy a year ago today. The fascias in both legs were sliced open through key hole surgery. I felt an immediate difference from my very first steps after surgery.

Me, post surgery

Today I am mostly pain free. I say mostly, as I developed plantar fascitis (pf) in both feet and back pain as I literally had to work out how to walk ‘normally’ without pain or tensing in anticipation of pain.

I now know what it’s like to go for a walk without the pain-simply extraordinary. I never really understood or appreciated how bad the pain actually was until I was free of it. Sometimes I dream of it, I often fear it common back (in some cases, the fascia may reattach within 5 years of surgery requiring repeat surgery). But it’s gone, for now at least.

I wanted to document my experiences for those who, like me tried to get help for a fairly rare medical condition but were left poorer and without results, time and time again. I’m now part of a Facebook group for others with the condition and being able to talk to others with the same struggles is so important. I sometimes wonder how my life would be if I had been diagnosed early on and treated effectively. There would have been more dancing, that’s for sure and just maybe, one of those jogs.

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