Just wondering what others’ experience is as I am a newbie to this disease. Thanks, Beth L
I think that the people that are on the forum are those for whom it worsen over time. I have read that 30% worsen, 30% was equal, 30% was better and 10% was asymptomatic in 8 years.
Thank you, Carine. Your response gives me hope. I am being a lot more careful about doing things that aggravate my EM.
Smiles, Beth L.
Hello Beth! I was diagnosed about 10 months ago and really felt at a loss. It was like a switch flipped and things were going from bad to worse! I've never been ill, don't have any underlying conditions, take really good care of myself and spite the odds, there I was.... EM started changing everything in my life. I made a decision that EM wasn't going to beat me. I was going to research (be careful what you read - some of it will scare you and there is not need for that), join forums such as this and not let up until I found something that worked for me. I'm not there completely, but really close! I would say I'm 80% better than I was just 6 months ago. My advice to you is to stay in the fight! Don't back down in getting answers from your physicians and do your homework. I highly recommend the Medication Sense Articles by Dr. Jay Cohen. You may even think about paying the $275 to consult with him over the phone. Best $275 I've spent in a long time and he didn't short change me. He spent over an hour visiting with me. I used his knowledge and brought many thoughts and suggestions to my Dr. and thankfully the ideas and thoughts were well received. I currently take10mg of Propranolol three times a day and thanks to Dr. Cohen's suggestion, I'm taking Cyproheptadine, 4mg three times a day. No pain meds, no nerve meds, etc... Heat certainly creates flares, but I've resorted to tepid water running over my feet for about 5 minutes and elevation for about 15 -20 minutes. Usually knocks the flare out. What works for one doesn't work for another, but know this - you are not alone! Happy to visit anytime if you'd like. Take care and best of luck to you!
Hi Bootcamper, Thanks for your advice! I haven’t read a lot of postings here because they scare me, but I’m trying to do so. Jay Cohen is good. For now I want to get into Mayo. Their neurology department denied me, but my neurologist reapplied to Mayo dermatologist Mark Davis, and sent photos of my flaring feet, legs and possibly my face. I’m on 3600 mg gabapentin and 450 mg mexiletine. Doesn’t seem to help. I hope Mayo can provide a drug protocol for me. Right now the best thing is staying off my feet. What a life. I’m indoors, feet elevated, most of the time. I wonder, is this typical for everyone else? I rarely socialize or go shopping. Last week I gardened 1-1/2 hrs. in warm weather, then spent 1-1/2 hrs. vacuuming. Sounds pathetic, but I so enjoyed it! But it took 1-1/2 days of bed rest for my feet to calm down. I am trying to be much more careful now. This condition is unbelievable. It has totally changed my life. I wonder if many of my fellow sufferers feel the same. I’m so glad the weather is turning cool. I’m not tech savvy. I hope I’m hitting the right reply button now and posting the correct way here!
Many smiles, Beth L.
Have you tried the amitriptiline/ketamine cream ?? It have saved my life...
Hi Carine, I just started the cream yesterday. But I have to pay $274 a month out-of-pocket for it! I get so mad that insurance doesn’t cover it. My neurologist doesn’t know how to help me. Or maybe he doesn’t have time to research drugs. I was the one to suggest mexiletine, so he put me on it. Then I read about Mayo’s study on amitriptyline and ketamine cream. So he prescribed that too. I hope the cream works. I am rubbing an antidepressant, amitriptyline, on my (very depressed) feet, hee hee!!! But I will try anything at this point.
Many smiles, Beth L.
Ok, you must put it on your feet 4 or 5 time a day, and try it 15 days to be sure if it is effective or not.
hi beth, what are the news with the cream ? Does it works ??
I don’t notice much difference with the 1% amitriptyline, 10% ketamine compounded cream. For $275 out of pocket for a month or so of cream, I don’t think I’ll refill my Rx. So far, staying off my feet and not getting hot or being in hot weather too long helps the most. Winter is coming. Yay!
Beth L, have you tried running tepid water over your feet for about 10 minutes, then elevate for about 20-30 minutes? I have found doing this during a flare usually puts the flare to bed and I can go on about my evening. Hang in there and keep trying different remedies. Warmer temps are tough and I totally understand the change of life. Lots of changes, keep fighting.
Yes, that’s a good idea! Thanks!
My mom was so excited to try this when we read about it, her doctor got her a prescription but it didn’t help… And then her feet and lower legs got worse. I’m not saying worse from the cream but it was around the same time. She stopped the cream now and we are looking for other options
Hi Beth, I just read your post. I’ve had EM in my feet for 12 years… I’ve tried all oral meds and 2 neuro-stimulatorß and now have a pain pump the pump has been in for 3 weeks and so far no relief. if anything the pain seems worse. I am beside myself. I like so many of us fight depression constantly. I have becomequite sedentary. My smiley faces are becoming dimmer. My husband is my saving grace. He is a Saint. May we find something soon that will release this pain that we all have to endure. Patty
Is this true? Where have u read it?
you can see it on many scientific articles. One very recent :
"Regarding evolution, Davis et al. reported that after an eight-year follow up, 31% of patients exhibit deterioration, 25% had no change, 30% improved and 10% had a complete remission. "
For me, 3 years later, there is a great improvement. I have my ketamin 2% cream every day and despite the flares, my life is great because the pain is not so intense than at the beginning.
But how’s ur life during the summer-monthts? Can u go out when its 25-30 degrees? Doesnt ur toes get very red/warm then?
my life is fine in the summer, but I adapt. I can go out without problems up to 25 degrees. But even in winter I’m in crisis after about 15 minutes of walking. In summer it’s obviously faster, but it does not bother me anymore. I’m used to it. Above 27 I am in permanent crisis, but my pains are tolerable now compared to before. So I do with and I do not hesitate to do what I love.
Ah I see.
But how is ur toes when its really hot outside? Do they get very very red? Because mine does. But i have no pain at all, just the very annoying redness and a small hotness.