The other night i had by far the worst flare i have ever had. two days prior i def over exerted myself trying to get my house clean, and when i took a shower after maybe 5 minutes or so the most horrific pain hit me. my hands have been getting way redder than normal, same with my feet. my palms and areas on top of my hands are red non stop now, when before it was only during flares. If the water hit my feet, even standing on the shower floor and that water hitting my feet, oh my god by far the most pain i have ever experienced in my life. and my feet had become so swollen that my toes began turning purple and the skin was so tight i thought it was going to break open. Long story short I ended up in the ER because the pain got so bad I couldnt handle it. The ER dr rx me some 5% Lidocaine topical cream to put on my hands and feet during flares. Has anyone used this? and if so does it work? also my rheumotologist switched me from gabapentin to lyrica [for fibro and EM] because the gabapentin wasnt working. Which works better for any of you? My rheumy is a new one, and he actually has an older lady as a patient with EM. He rx her aspirin, and thats all he could really recommend to me as far as any kind of treatment. Tried the aspirin, but no luck :(
Hi Laurent85.
I have tried the cream with no luck. I couldn't feel any pain relief at all. I now get lidocaine infusions and take Mexilitene which is an oral form of a lidocaine type drug. These have helped take some edge off but I still can't live a half normal life. It is more like they make my pain less severe when I am already taking all of the precautions to lessen my symptoms such as cooling my home, sitting in recliner, and resting. I will still get milder flares at times when I have done all I can to stop them. These milder flares are less painful. If I try to go to a store and walk around for more than 5- 10 minutes my flares get so bad I don't see improvement in this type pain.
I see a rheumotologist who has 2 other EM patients but She doesn't know anything about EM and we try different options I bring in and do a trial and error approach. I am still trying. I have tried both gabapentin and lyrica and haven't had success with either. I am still upping my gaba though.
I hope the cream helps you. I know we are all different and just because something didn't help me it doesn't mean it won't help you.
Take care
Thank you Alina! if the cream doesnt do anything im def going to mention the Mexilitene to my rheum! Its so terrible that there is such little information about this disorder. Every dr and specialist i have been to except for my current primary physicial and my new rheumatologist have no idea what EM is. Hopefully there will be more studies on it, and pain management seminars to inform doctors. Have you applied for any kind of disability? I just requestdd the forms for state disability because i cant imagine trying to work as a massage therapist or being on my feet for very long. On top of the pain that comes with EM, the looks i get from people when my hands, feet, and nose flare and i look like a lobster with rudolphs nose.