Friday, February 18, 2011

I Fell in to a Burning Ring of Fire

I have an amazing group of friends...both online, as well as off-line.

You all have been amazing in your support, and it is VERY much appreciated, believe me!

Here's the deal...

About 7-8 years ago, I noticed a very strange occurrence in my body every time I drank a glass of hands would turn amazingly bright red, and they would burn...they'd get all tingly and itchy and they would HURT. A LOT.

They would hurt SO MUCH I wanted nothing more than to grab my Chef's knife and just chop them off. Problem solved.

Ouch, ouch, ouch...and every time, I would look at Hubby in bewilderment, as to "Why is this happening?" and we'd both shrug, I'd suffer through it for a few hours, and the cycle would repeat itself next time I'd drink.

Very weird.

As the years went on, I noticed that it wasn't just wine triggering the reaction - but anything alcoholic....martinis, margaritas, mojito's - didn't matter. Drink a few sips, and my hands were on fire. Ouch.

Sooooooo.....I gave up drinking the last few months. I just told everyone I was "allergic" to wine - and let it go at that. It just wasn't worth the tremendous pain.


The pain continued. Granted - the pain wasn't as severe - but it was still there.


And it was now in my feet, as well. Along with my lips.

Burning hands. Burning feet. Burning lips.

WHAT was going on??!

Erythromelalgia is what's going on.

And it sucks.

"EM" is a rare neurovascular peripheral pain disorder in which blood vessels, usually in the lower extremities (or hands), are episodically blocked (frequently on and off daily), then become hyperemic and inflamed.

Curable? No. But treatable. To treat it, you avoid certain triggers.

The triggers include: heat, pressure, mild activity, exertion, insomnia, stress, alcohol, sugar, melon and caffeine.

Well - take out the world "melon" (yuck!) from that list, and you pretty much have MY LIFE.


So - no more gazillion Diet Dr. Peppers during the day. Sniff.

No more gazillion pieces of chocolate during the day. Sniff.

No more stress during the day. Okay, that one made me laugh.

Seriously, though, I have begun making the lifestyle changes necessary to be pain free. I haven't gone cold-turkey on the caffeine - I've been doing FANTASTIC by only having one soda pop per day. Hey - that's HUGE for me, and I am patting myself on the back.

I've cut sugar back to only one tiny piece a day - and again, that's huge - for me - as I am the Cookie Monster incarnate.

It's hard. I'm going through withdrawal. And I'm pissed that I'm having to do this.

But I've noticed the difference in just a few days. The burning and tingling in my extremities has stopped.

My cravings, unfortunately, haven't.

Welcome to my new world of managing EM.




LDswims said...

Ugh, I completely feel ya - that's a major lifestyle change, to be sure. I have an aunt who says "I'm allergic to alcohol" and chooses not to partake - even though she did for the first twenty years of my life. Upon probing, it was the same thing - it was "easier" to not have that wine than to deal with the pain it caused. So I get it. Still, very hard to give up some of those things because they are the little exclamation points that can make a good day great.

The cravings will subside. I'm on a kick to clean up my diet this week and am doing very little carbs as well as REALLY trying to cut back on the sodas - I usually drink 2-3 a day. Yesterday I got it to 1/3 of a can. Today, the goal is none. I tried this awhile ago, right after getting banded, and within 6 weeks or so, I didn't miss them at all. Bad thing was, once I got to that point, I relaxed and said "one here or there isn't bad"...but one here or there turned into one a day and built from there. Anyway, I promise, that will get better. And you have serious motivation behind it, anyway!

Hang in there - it isn't fun and I'm sorry you are having to deal with this. But your efforts will be worth it!

Terri said...

I haven't ever heard of such a thing but I am glad you have found out what it is and that you can do things to make yourself better. I think you are doing a great job!