Hello all - Care taker from Philly

Hi I’m Danette

My 22 yo daughter was recently diagnosed with EM. In a lot of pain all the time. Not getting much sleep. Taking Lyrica and amytriptiline for about 2 weeks not much success yet. She cannot walk her feet are so bad. Any suggestions would be helpful

The sodium channel blocker mexiletine seems to have a good success rate in younger patients. I am one of them. It stopped my symptoms within 48 hours of the first dose and I haven’t had a full flare in over 5 years. Even better, during that time I’ve been able to successfully reduce my dosage from 3 times daily to just once daily with no adverse effects. I would ask your daughter’s doctor about mexiletine.

Thanks so much! We were beginning to think this was our “new normal”. Thanks again for the quick response

Been there! I too thought “this is as good as it gets now” in the first couple months after it started. Kept fighting though and found my way back to a much better place.

Carter DK I just started it, What dose were you on and now on?
Pa Mom I love Dr Michelletti at HUP. He is in Dermatology. I have seen dozens. He agreed to Mexilitine for me . He hesitated due to no gene mutation. Tell him Traci Manuel referred. If you give me name I will send a message

Thanks virgo3! With COVID it’s been really hard to get appointments but if I can be scheduled in the next couple of weeks I will be sure to give your name.

I took 150mg capsules three times daily for over 3 years. Then I took 150mg twice daily for a year. Then beginning this March I started taking 150mg once a day (usually around lunch time, 1-2pm).

I’ve been suffering for 4 years. Sleep has been a huge problem. My doc prescribed Trazadone and it has really helped. Before bed, I soak my feet in cool water for about 5 mins. I then turn on my 2 - 4” fans that blow on my feet all night while I sleep.

1 Like

I was having constant flares, severe Edema and terrible nerve pain all day and night and now I take 200mgs of gabapentin 3X a day and 300mg before bed and Tramadol for pain and they have both helped immensely - the Edema has been helped with wearing Edema netting worn all day…it is not heavy and enclosing like compression stockings which I cannot tolerate. I also have Raynauds so raising my feet for the flares and Edema is not an option for me. I hope you can find something that will bring her relief <3

I eliminated All drinks but filtered water, - no alcohol, no caffeine, no sugar, no artificial sweeteners, and I think that helps keep my flares down. And drink alot of water. When my feet are flaring, drinking 16 ounces of water helps get the flare down.

Don’t be too quick to give up on Lyrica. It took months for it to really help me. I still take cymbalta, Salsalate and CBD oil too and I really seem to need them all.

I am on a large dosage of gabapentin. I take it 3 times a day. Makes a huge difference. Compounded creams of Amitriptyline and ketamine for huge emergencies.