Hi there... I am a zebra!
Some of you may get that reference immediately. But for those who don't, here's the saying: "If you hear hoofbeats, don't assume it's a zebra." That's a cute way of reminding folks not to go to the exotic right away. It's often used in medicine to remind doctors that they should look at the most common explanation for an ailment before going to a rare one. But sometimes those hoofbeats turn out to be a zebra after all.
My hoofbeats began early in 2013, with a numb-yet-not-numb feeling in some of my toes. I put it down to tight shoes, dancing and standing a lot, all of which I did when I was younger. When I began to get tingling and burning sensations, I didn't know what the problem could be. I'd have flare-ups mostly at night. By June, the flare-ups got worse and I found that cooling them with an ice pack or cold water would help. I began sleeping with a cold pack between my feet, thinking that a sock with a small cold pack inside would be really great.
This is a minor flare-up
In July, I discovered
these cold therapy socks and wore them to bed if I needed to, which soon turned into all night, every night. They helped but didn't last as long as I needed. I could only get 2-3 hours of sleep at a time before having to change the cold gel inserts. During the day, if I had a flare-up, I'd sit with my feet on a cold pack. I bought half a dozen to keep in the freezer. Things went this way for a few months...
Then I saw an ad for Lyrica and my symptoms sounded similar to the ones described. I went online to do some research and was pretty sure I had peripheral neuropathy. But you know what they say about self-diagnosis.
One night it got so bad that my husband took me to the emergency clinic. The doctor there looked at my feet, asked me some questions, looked puzzled and went to get another doctor. She looked at my feet, asked a few questions and looked puzzled and went to get the dermatologist. He looked at my feet asked a few questions and looked puzzled. Three doctors and nothing but "I have no idea" as a diagnosis. Maybe I should go see a podiatrist, they suggested.
So, I went to the podiatrist who looked at my feet, asked me some questions and looked puzzled. He told me that it was probably vascular in nature. For this, he charged me $185. Next, I went to see a vascular specialist, who did an expensive ultrasound of the arteries in my lower abdomen and legs. That was inconclusive. He suggested it might be vasculitis.
Back to my primary care physician, who did the by now familiar look, ask and shrug routine. He thought that my possible diagnosis of PN was a good place to start. He put me on gabapentin, which helped some but not enough. He referred me to a rheumatologist who, saints be praised, finally diagnosed my problem as erythromelalgia, a rare disorder, with an occurrence of 1.3 per 100,000 in the U.S. She observed how my feet turned red and warm and how I had to bring cold packs with me in a cooler and how I had to put my feet up on one even during her exam. She gave me some information and a website dedicated to EM, told me not to take any more ibuprofen and to add one aspirin a day. She confirmed me as a "zebra," something I'd only joked about with my PCP.
Being on a pain regimen already, I wasn't happy to stop taking one of my pain drugs. It did help a little... but for long. Within a week, my flare-ups were as bad as ever.
So here I am, getting 2-3 hours of sleep at a time. Having to confine my activities to things-you-can-do-on-a-couch-with-your-feet-up. Mostly, it's tolerable as long as I don't do anything to exacerbate it. But, when I get a really bad flare-up, it usually occurs at night. I have to sleep in the guest room because getting up and changing gel packs so often interferes with my husband's sleep. Since he's the one who has to get up in the morning, I prefer not to do that.
The EM impacts every facet of my life, which is one reason you don't see me "at work" here at DK very often anymore. I don't want to be scheduled and have to leave my fellow Rangers in the lurch if I have a bad episode. Sometimes sitting at the computer will trigger an episode, so that impacts being a Ranger. EM has made me mostly housebound. I can go out if I bring a small cooler with cold packs upon which I can put my feet. I have to do this in the car on the way there and back, too. It affects being able to do chores, cook, work on my art or jewelry, practice guitar... even my sex life.
I've tried a few things outside of that prescribed my my doctors, including capsaicin cream (made it 100x worse and sent me to the bathtub with a scrubber trying to get it off!), alpha lipoic acid (gave me heartburn) and burn relief gel (helps slightly). I explored the EM website and read about lidocaine patches working for some EM patients. However, neither my regular doctor nor the rheumatologist would prescribe even a trial. "You have to go to the Pain Clinic," I was told. Once more into the breach... I couldn't get an appointment until a month later.
When I finally saw the Pain doctor, she okayed the lidocaine patches but wants me to get an MRI and new X-rays of my lumbar spine. She seems to think that the arthritis in my lower back could have something to do with the EM. I find that highly doubtful. But, on the off chance that she could be right, I'm going in for them on October 8th. The lidocaine patches, though they seemed to work some during the day, did almost nothing at night. So, we've moved on to an experimental gel of 1% amitriptyline and 0.5% ketamine, as described in a Mayo Clinic study. While it does help tremendously during the day, it is almost useless once I lie down to sleep. No matter which bed I try, the same thing happens: moments after lying down, a flare-up begins. I'm still experimenting with the gel -- frequency and amount -- so I may stumble upon the winning combination. I hope.
We have tickets for 2 concerts in the next two months and I have a friend coming from Australia to meet up in Seattle for a day & night in mid-October. These will involve walking and sitting upright, both of which can cause a flare-up. My husband has offered to push me in a wheelchair but, though I've done it before because of my back, I hate the idea of being pushed around downtown Seattle. Either way, my trusty mini-cooler full of dry ice and gel packs will be coming along.
I feel like my feet have betrayed me. Some mornings (or afternoons if it's been a bad night) the only reason I get out of bed is because I need to get my feet on or in something cold. I feel like a prisoner, held captive by my feet. I can never get out for long, can't sit upright because that position triggers an attack. A shower triggers an attack. Sleeping on my side triggers an attack. Affecting the circulation of my legs receives an almost immediate answer from my toes. That answer is reddening, swelling, heat and tingling pain. Sometimes it gets so bad that amputation sounds like a great solution.
The reason I'm am publishing this here is not to elicit sympathy but to 1) see if anyone has any other suggestions or experience with EM that may help me and 2) to help anyone who may be having the same symptoms and are getting the same answers I got at first. If you recognize these symptoms, now you have something to ask your doctor about. EM is a rare condition and most sufferers do not obtain the help they seek because doctors are taught to think of horses before they think of zebras. EM symptoms can affect the hands and, sometimes, the face, too. If this is you, tell your doctor.
If this diary can help even one person avoid the pain and helplessness that I feel, that will be reason enough to have written and published it. Thanks for "listening."