Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Tery's Story.'

Camp Fire

My Erythromylalgia "adventure" (adventures suck while you're having them, a wise man once said) began in 2012. My feet would sometimes get warm and tingly when I went to bed. It wasn't very disruptive then. I slept apart from my husband at the time because of his snoring and restless legs. With him the only one working I would do anything to make sure his sleep wasn't disturbed (he ended up on a CPAP machine and "special" brownies handle the legs, now). I would use a cold towel when my feet got bad. Finally, I found some cold therapy socks and those dealt with the problem so I could sleep. During the day, it wasn't too bad. I walked 2 miles 4-5 times a week and danced hula now and then.

In the summer of 2013 I was traveling in the Northwest, following my favorite band (Rush).

My cold therapy socks (2 pair so that when one got warm I could grab the other and go back and forth as needed) traveled with me in a cooler with dry ice (hotel "freezers" are awful). At that time my doctor believed my problem to be peripheral nephropathy even though I wasn't diabetic. He gave me gabapentin which helped a bit. After concert season (Vancouver, Seattle, Portland in 6 days) I went back to the doctor to see if anything else might help. We tried prednisone (ugh) and amitryptyline (meh) and I tried a fasting cleanse and supplements. When those didn't help, I was sent to a rheumatologist. At this point I traveled with cold packs in a cooler. When she came in and saw me with my feet up on the exam table on a gel pack she knew right away that I had Erythromylalgia. She increased my gabapentin and advised my regular doctor.

Taken in Hawaii when the cellulitis was going on

My feet got worse. I was desperate for ways to get them cold without getting them wet. I bought a cold therapy pump system and it helped most of the time. One night my feet were so bad that I broke the taboo and put my foot into the water reservoir. Ah... blessed relief. So my go-to treatment became ice water with my feet in a Ziploc bag so they didn't get wet. I would often sleep that way, my feet in plastic, immersed in ice water in an old foot spa.

In April of 2015, my husband and I went to Hawaii -- we'd had the reservation at our timeshare for 18 months so we had to use it or lose it. Just before I left, I went to my pain doctor (arthritis in L4 & 5). My feet were swollen and red all the time at that point. I also had a few small sores. The Physician's Assistant who saw me didn't even look at my feet. If she had, she may have been able to diagnose the cellulitis that had developed and give me antibiotics then. Needless to say, our trip wasn't much fun.

Typical EM flare for Tery

When we got home I called my regular doctor, telling him how much pain I was in. He blew me off with, "If it's that bad go to the ER." So we did. Good thing, too, as I had a staph infection (flesh-eating bacteria; ugh!). I spent 10 days in the hospital where my pain doctor saw me (I refused to even acknowledge the other guy). He tried a sympathetic nerve block but it did nothing. He put me on Lyrica and -- at my request -- mexilitine along with the antibiotics. My feet began to get better and, when I was released, I agreed to see the CHI Franciscan doctor near me as a GP (the hospital was run by that company). My initial dose of Lyrica had been 150 mg/day. But my EM was stubborn and the dose was edged upwards. The new GP wasn't on board with this idea, though, even when I had no appreciable side effects. When we got to 450 mg/day he refused to write a 'scrip. So I fired him (we have to be firm with our doctors and can’t let them shine us on). I found another doctor who was willing to work with me on dosage. We finally ended up at the maximum of 600 mg/day which has been my dosage for over 2 years. Still no side effects save dry mouth. This, along with 150 mg/day of mexilitine keeps the EM tolerable. During the day, anyway. But all bets are off at bedtime and those cold therapy socks are still in use.

At least until last week. I began Bob's Bucket Protocol (see link) on Monday, April 23rd. It's been 9 days and I'm seeing some relief. I have been able to sleep without my cold socks and leave the gel packs in the freezer (did I mention I have my very own freezer in my room? Yeah.). Most of the time I'm free of flares but, again, bedtime is a roll of the bones. I'm up at 6:30 am writing this because I can't get my feet to behave. But I have been able to take hot showers, which is nice for a change. I have not tried socks and shoes yet. Maybe this weekend.

Tery with a cooler

The worst thing about the EM -- okay, ONE of the worst things -- is not being able to walk very far. My 2-mile hikes are history. I can't dance (but I can talk). I can't go shopping without riding one of those carts.

My husband has to push me in a wheelchair if we go to a concert or anywhere that requires more than 50 yards of perambulation on my part. The only good thing about the wheelchair is I ended up in the front row for Rush's R40 show in Seattle. But I'd happily trade that for being able to stand through the whole show like my friends, even if it was 10 rows back. I'd trade it for being able to go on a hike or sit up like a person at a restaurant instead of putting my feet up on the seat. I'd trade it to dance a whole hula; or any dance, really. My husband and I flew down to see the very last Rush show in Los Angeles on August 1, 2015. I had the wheelchair. At one point before the show, I rolled myself to the bathroom, weaving through the crowds. I have a little bike bell shaped like a hamburger on the arm of my chair which I use sparingly to make sure I don't run into people (those foot rests can hurt!). As I was returning to my seat, ringing my bell as needed, two ladies (definitely high-maintenance) gave me the stink eye and one muttered, "She thinks she's so special." That stung. Because I don't. Not at all. If they only knew how helpless I feel, unable to even walk to the bathroom. Relying on my husband (who is an angel) to get around concert halls and airports. I hate being that 1 in 100,000 and knowing that there is no cure, only drugs and cold socks and sleepless nights.

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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