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When the 'Painsomnia' of Erythromelalgia Attacks

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It is 1:14 a.m. and I am awake due to another severe flare up of erythromelalgia (EM). This rare disease causes intense burning in my feet, legs, and hands.

I tried to go to bed around 10:30 p.m. but within five minutes, the pain in my left foot spiked to a level I cannot adequately describe. “Burning” fails to adequately communicate the intensity and variety of the pain. Roasting, broiling, boiling, throbbing, tingling, and aching combine to form nothing less than torture.

Sitting in bed, I called out, “My God! When will the pain end?”

My wonderful wife asked if she could help, but I have already taken a full dose of my medications. At that point, I could not take any more for about another four hours.

She then asked me if she could help me to the couch where I spend most of my nights writhing in painsomnia. I told her I was unable to put my foot down because of the “fire” in my left sole. We waited for about five minutes, and I hopped and crawled to the living room.

Dignity loses all meaning when this level of pain attacks.

Since then, I have been lying the couch with my feet hanging over the edge of the cushion because anything touching them in this condition exacerbates the suffering. In my overwhelmed state of mind, I considered going to the emergency room. I have been there before in this state, so I know what would likely happen. After waiting, they would give me some pain medication, probably similar to the ones I already take. They’d wait for the pain to decrease and send me home.

For that reason, I chose not to go. Plus, I fear the possibility of being considered someone who runs to the hospital in search of drugs. I hate that stigma. So I decided to wait it out.

How does my mind make all of these calculations while my foot sizzles?

I do not know, but my supportive wife sat with me while I thought, moaned, and prayed. I have had this experience all too often, so I knew the pain would come down to a more tolerable level. Eventually, I encouraged her to go back to bed. She needed some sleep so she could be ready for work in the morning.

With the pain now down to a level where I can think rationally, I want to record this experience with contemporaneous notes. I hope to remember the awful burning, my inability to walk, and my wife’s support.

I also thought writing about it would somehow create a space between my mind and body; recording the incident might be an analgesic to alleviate the present intensity.

So here I am. Still on the couch. Feet hanging over the side with the fan blowing on them. Exhausted, but unable to sleep. The intensity has reduced, but I remain reluctant to stand up and walk to the bathroom, fearing that walking may trigger another flare.

I hope and pray my pain will come down to a more tolerable level in the morning, but for now this is just another night with the chronic pain of erythromelalgia.

Originally published: May 30, 2018
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