It is extremely important that every person with Diabetes is aware of what Charcot foot is, and the potential for susceptibility to the condition. I have had diabetes for 10 years (that I know of!) and I have never heard of Charcot. All around me, when I explain my condition I am met with the same thing: no one has ever heard of it! I have had my neuropathy in my feet for years, and was under the impression that all I had to worry about was to be sure not to cut my foot, as it might lead to an infection that in turn could lead to amputation. No cuts, no worries! Had I had any clue that my bones would go soft and break, at will, I certainly would have been more pro-active and perhaps not be in such a severe state of the condition.
It doesn’t help matters much that the medical field in general, are not aware enough of Charcot to make effective diagnostic decisions. I have come across a few personal accounts around the internet, and my own experience too, to realize that most of us are misdiagnosed several times over before Charcot foot becomes a reality. I was whisked off for unltra-sounds looking for blood clots, I was given numerous vascular exams. I was told I had some kind of trauma to the foot and was suffering from “sympathetic regional complex syndrome”, or something of that sort. Was told I had Lymphodema. One doctor even acknowledged I’d suffered some fractures, but that they surely were healed now and since I wasn’t in any pain and was able to perform my job (which included walking about 10 miles a day!) that I should just carry on. Which is what I did. Of course, having no pain in the foot is because those of us with severe neuropathy don’t have any sensation/ feeling in the foot. It becomes a rather vicious cycle, a catch-22. Your bones break, you don’t know it, you keep walking, and the bones break some more. And more. And more till you are literally walking on a bone that is not where it is supposed to be. That is what lead to my ulcer/ wound.
One doctor kept asking me “And you don’t remember any trauma to the foot?” and I was wracked with guilt because I could not remember anything traumatic. Did I have too much to drink one day and try to imitate Bruce Lee, and break a cinder block with my foot…or something?! I mean, there was no explanation to my broken bones, and I felt horrible about it. I was very much relieved though, when I learned after my Charcot diagnosis that no trauma at all is needed for the bones to break. Often times they just simply collapse on their own. Not to creep anyone out, but I remember in my early stages of my condition, the bones in my feet moving about and making little popping, crunching sounds/ sensations. On a walk with my parents I remember telling them my foot kept crunching, and was it even possible I could have a broken foot and not know it?? Of course they told me that was impossible! I remember tugging up a pair of beloved ankle boots (that really didn’t want to fit anymore due to the swollen size of my foot) and my foot protesting in return with a symphony of bones popping around inside my foot. ACK! Of course I wore them anyway.
What really is sad is that without any knowledge, without any doctors having a clue what was wrong with me…I walked my poor Charcot foot to death!! My job had me on my feet nearly the entire day, doing expediting in a warehouse the size of a football stadium. On a bare, poured concrete floor. Lot’s of times friends would joke about how I should wear a ped-o-meter to work so I could clock how many miles I’d walk in a day. We guesstimated it to be about 10 miles! On top of that, I was a fairly active person. I bought my own kayak and would haul it out into the bay several times a week. I loved to ride my beach cruiser bicycle. And I was always taking walks either 2-3 miles in a park or shorter uphill mountain hikes. Ironically I took such a hike just days before my ulcer and my hospital stay made it’s appearance!! And the entire time my foot was swollen to twice it’s size. I’d long learned to just live with that, and that was a huge mistake of catastrophic proportions! Now I know, and I want every other Diabetic to know, that the swelling in the feet is the number one sign/ symptom of Charcot foot. Do not ignore swelling in your feet! Another sign is the skin on your feet feeling much warmer than your other foot. And any signs of redness can also be another indicator of Charcot foot. So please always keep an eye on your feet for these three symptoms and don’t hesitate to have your foot looked at by a podiatrist. Of all doctors, podiatrists are the most likely to understand illness and disease to the feet, and you stand a better chance of being properly diagnosed. But whatever doctor, please have it looked into if you suspect you may have Charcot foot!
Cassandra -Charcotchacha copyright 2015