As this is my first post, I’m not sure where to start, but I’ve had erythomelalgia in a mild form since I was 18. It wasn’t until age 25,(currently 27) my condition worsened significantly and started greatly affecting my life in negative ways.
Over the course of my journey, I have been to two different specialists, and have had EMG tests done, skin biopsys, spinal fluid drawn, taken medication such as nartriptiline(which I would NOT recommend as my experience was horrible), tried a mixture of medicated lotions, and none of it has yielded noticeable results. And after two years of searching for answers, i find myself with nothing more than when I started.
My condition has become a part of my identity, and it takes its toll on me mentally. Every time i try and remove it from my identity, my flares bring me back to reality. I’m Not sure what I hope to achieve from this post, but I think I’m just looking for support. I have lost a lot of positivity lately.
Hi. I was diagnosed about the same age. I’m now 24. I’m struggling at the moment. Doesn’t help I have other conditions to battle too. What do you do with yourself to keep busy"?
To Laura, I currently work roughly 30 hours a week as a bank teller, but the condition has changed a lot about me, including my work ethic. I think sometimes I come off as lazy to the general public because there are a lot of things I don’t want to do, because they aggravate my hands. And it’s really stunted my hunger to do well in life. Before I would seek activites that would provide some personal improvement, but I have a much different perspective now. It always feels like I need to try my best to live in the now, because I don’t know how I’ll feel day to day. So besides work, and laying in bed with a fan on my feet, I play magic the gathering. Also, I stay in and spend time with my girlfriend.
To Carter,
I have not tried a sodium blocker. Have you, and if so, how did it work for you?
When I finally got to see a doctor who had experience treating erythromelalgia, he said a sodium channel blocker was the first thing we were going to try. Pharmaceutical companies are currently testing selective sodium channel blockers as novel analgesics on people with erythromelalgia. There is considerable support that suggests they work. My doctor says erythromelalgia is caused by defects in sodium channels. Here is a case study, published in JAMA Dermatology, that shows Mexiletine and Lidocaine therapy (both are sodium channel blockers) effective against a very severe case of erythromelalgia. http://archderm.jamanetwork.com/article.aspx?articleid=478089
So, how did it work for me? Really, really well. Before I started taking Mexiletine on August 1, I had flares every day. I would have flares while showering, flares while sleeping, flares while just sitting on the couch watching television. I didn't have to be doing anything to have a flare. Anything that was physically demanding, such as sustained walking or exercise, would automatically provoke a flare. My erythromelalgia was life altering.
That all stopped when I began taking Mexiletine. I no longer have unprovoked flares. Over the last 5 months, I've maybe had 1 or 2 unprovoked flares. Most of my day erythromelalgia is not a concern. My knees, which is where I primarily have symptoms, still look pink/red/purple if i am standing and walking. They don't get hot, however. It's like the heat mechanism is turned off by the medication. I've been running about 3 miles a day the past few weeks and that does invoke a minor flare after. It's nowhere near as bad as flares used to be though. I can barely feel them. I put ice packs on for 10 minutes and that takes care of it.
If you haven't tried a sodium channel blocker, I think it'd definitely be worth trying.
It seems that we are in similar situations: Nobody believes me, I can't appreciate a lot of the things that I used to because of crazy symptoms like I am being pranked by aliens for a reality tv show, yadi yada...
My way to cheer up is to acknowledge that I don't have control on my condition and I have to forgive myself for the things that I can't do. Coming to terms with that helps a good deal. By the way, you are not lazy, you have a chronic condition, you may need to slow down to thrive.
Also, I take like symptom holidays, for one week, where I don't think or talk about them, and it helps me too.