Who diagnosed you and what meds are actually working for you?

Try a dermatologist. They are taught about Em in school. Bring photos of a flare.

Thatā€™s what my mom doesā€¦ Biofreeze, elevation and cool waterā€¦ No other medication has helped yet

it was actually a pain clinic doctor who diagnosed meā€¦what works for me though not perfect is Aspirin and Lamotrogeneā€¦lamotrogene is an anti seizure medication and its an ā€œoff label useā€ to treat EM. The aspirin really helps though as well. I had some medical tests the other day and had to stop the aspirin for 2 days and I am still getting back on track with it 2 days later. Aspirin is an anti inflammatory and a blood thinner so it seems to help on both counts.

Although no medications helped me, a low oxalate diet has actually helped me dramatically. It involves avoiding foods that are high in Oxalates. But if you try it, start very gradually. The yahoo group called ā€œTry Low Oxalatesā€ has great information.

I can stand and walk and wear shoes for hours now. My feet can even feel cold now. There isnā€™t a blowtorch to my feet every night. It went from horrible burn pain to a mild first degree burn, or even no burn. And I have energy like I had forgotten existed.

Itā€™s a difficult transition, I am still adjusting. Swinging back and forth between amazing and sick, trying to detox slowly from this stuff in fruits, vegetables, and nuts that I didnā€™t even know existed.

Itā€™s not a pill, but ultimately so much better than any pill I ever tried. I donā€™t know if this diet would help anyone else, but I wonder how many others are burning alive day after day and can hardly move because they eat spinach and almonds?

Good luck, may everyone find something that helps them. A little or a lot.

Very interesting, I get really bad kidney stones. I get two different types one from uric acid and the other from calcium oxalate. I used to have the list of what to avoid and I followed it for a few years and took allopurinol for the uric acid. I have stones in my kidneys all the time and have had 16 surgeries for my stones. But I have so much scar tissue on my ureters that I donā€™t have as bad of pain when I pass a stone. But if avoiding calcium oxalate helps EM then I should get back to that diet. I am on coumadin because I have had quite a few episodes of DVT and PEā€™s so I donā€™t eat much dark green veggies because of vitamin k messes with my coumadin and screws up my INR.

What side effects (if any) have you had with the Mexiletine?

The only side effect Iā€™ve had is heartburn when taking the pill on an empty (or near empty) stomach. Thus, I take it with a meal. Basically, I must ā€œburyā€ the pill; begin a meal, take the pill halfway, then finish the meal. I also take it with milk for added protection.