Heather Demars

My battle with Erythromelalgia began in September of 2012. I was walking barefoot in my backyard and felt a sharp pain in the ball of my right foot. I thought I had been stung by a bee, but after limping inside and inspecting my foot, there was no sign of a sting or any other injury. I hobbled around for the rest of the night, figuring it would be better in the morning.

It wasn’t.

I woke up in the middle of the night with the toes of my right foot feeling like they had been scraped raw. I stumbled into the bathroom, wondering what on earth I had done to my foot while sleeping, but again, my foot looked completely normal. Over the next several days, pain spread to all of my toes and then throughout the rest of my right foot, then started in my left foot. My feet still looked normal at this time, but felt like they were burning, being stung by bees, and being electrocuted all at the same time. The bones of my feet ached and felt broken, and the joints felt stiff. It became almost impossible to walk and the only thing that brought relief from the excruciating pain was keeping ice packs on my feet almost around the clock.

Though I saw numerous specialists and doctors, nobody could tell me what was happening. X-rays, nerve conduction studies, biopsies, blood tests, MRIs, and countless other tests all came back normal. But my pain was off the charts, constant, and now my feet were turning red and swelling. No pain medications helped. At one point I was on ten medications at once, and all it managed to do was make me groggy. I was on long- and short-acting morphine, plus hydromorphone and lorazepam among many others. Later a pain specialist told me that with that combo it was a miracle that I hadn’t died. At the height of my pain, I was hospitalized and given a full epidural. For the first time in months, the pain went away completely. I burst into tears of relief! But two hours later, the pain of EM broke THROUGH THE EPIDURAL. At this point I lost all hope that anything could help.

After 8 days in the hospital, the combination of the epidural, IV lidocaine, and IV hydromorphone finally relieved the pain to the point that I could go home on oral narcotics and Carbamazepine. The pain was still horrible, but was down to about a constant 7. Over the next couple of months the pain gradually improved to the point that while I still flared daily, the pain rarely got over a 6 or 7.

We finally linked the onset of my EM to use of the drug Ciprofloxacin, and while I wish every day I had never taken that drug, I also know that I have learned and grown in ways from this trial that I wouldn’t have been able to in any other way. I currently manage my pain using only 30 mg. of Cymbalta daily, and lifestyle modifications like not wearing socks or shoes (only flip flops), elevating my feet and cooling with a fan, sleeping with a fan blowing on my feet at night, trying to avoid temperatures below 45 degrees (F) and above 70 degrees (F), and avoiding too much time on my feet. Stress, lack of sleep, and sugar can also trigger flares. As a wife and mother of three (ages 4, 11, and 16), it’s not always easy to avoid flares and pain. But for the most part I try to respect my body’s limits and focus on what I still am able to do.