Update: I started using the cream for the first time Wednesday evening. So far, I do feel the cream has minimized the severity of the flares and I’m beginning to believe it helps prevent flares as well. It’s early, so I’ll keep everyone posted. I’ve put the cream on prior to working out and my feet didn’t flare near as badly as they have in the past during exercise. Maybe there is something to it. Fingers crossed!!
Bootcamper,
How intense are your work outs? What specifically do you do? Just curious what level is necessary to provoke a flare for you.
The bootcamps are basically a modified crossfit. We don't do any olympic lifts. A lot of body weight exercises, jogging, plyometrics, etc. Any kind of heat typically provokes a flare, so naturally my feet get warm in my tennis shoes. However, as long as I keep moving I'm good. It's when I stop is when I really flare. I typically take my shoes off as soon as I'm done and elevate a bit when possible. I really think the medodrine cream is helping. If nothing else, keeping me more comfortable.
You can wear tennis shoes ?!!! I wear only sandals since I have EM. Impossible to walk more than 5 min with tennis shoes. I can't exercice, I only walk with my sandals and with a bottle of water on my feet !
Carine
Carine: I had just about gotten that way before I was diagnosed. The medications to treat EM have been a trial by error process. I highly recommend you read the "Medication Sense" Articles written by Dr. Jay Cohen. I used his process of elimination and have found a combo of meds that seems to be providing me a substantial amount of relief. I currently take 200mg of Mexilitene 3x day, Propranolol 10mg in the morning and 20mg at lunch, and Periactin, 4 mg morning & lunch, 8mg early afternoon, and another 4 mg before bed time. It has taken me about a year to figure this combo out. My advice to you would be to hang in there and not get discouraged. I know it's super easy to get discouraged, but stay in the fight. Try something long enough to know if it does or doesn't work. Usually a month or so is sufficient. The medodrine cream seems to be helping as well. I wish you the best and happy to help if I can provide any additional info for you.
Thanks Bootcamper. I have also heart rythm problems so I think mexilitine and propanol is complicated for me.
Bootcamper, I have 3 questions.
First, since taking Mexiletine, on a scale of 0-10, what's your typical pain level during a flare? 0 being no pain and 10 being excruciating pain, the maximum possible.
Second, you say your feet "get warm" in response to exercise. Is it easier to tell you are flared by how your feet feel, how they look, or how they feel to touch? And just to be clear, "feel" is your own internal sense and "feel to touch" is how the skin feels upon palpation.
Third, is the redness in your feet evenly distributed? Meaning, does it occur on both the tops and soles of the feet?
Sorry for the questionnaire like questioning. I just think you are closest to me in symptom presentation and want to compare your scoring to mine.
My flares are also very similar to Bootcamper. I am a runner and only have flares when I stop running…if I am moving I don’t have pain. If I take my shoes off and elevate my flares subside. I run first thing in the morning because I seem to have the least problems this way and it’s the coolest!
Bootcamper…how quickly do the flares subside after using the cream?
My Hopkins doctor was worried about rebound flares from the cream…have you had any of these?
Hey Carter,
I will try and respond later tonight or will tomorrow to help with the detail. I've got to run out the door for a meeting, but will get back to ya. Thanks!!
CarterDK said:
Bootcamper, I have 3 questions.
First, since taking Mexiletine, on a scale of 0-10, what's your typical pain level during a flare? 0 being no pain and 10 being excruciating pain, the maximum possible.
Second, you say your feet "get warm" in response to exercise. Is it easier to tell you are flared by how your feet feel, how they look, or how they feel to touch? And just to be clear, "feel" is your own internal sense and "feel to touch" is how the skin feels upon palpation.
Third, is the redness in your feet evenly distributed? Meaning, does it occur on both the tops and soles of the feet?
Sorry for the questionnaire like questioning. I just think you are closest to me in symptom presentation and want to compare your scoring to mine.
Andrea, if you want to answer those questions, feel free...
With the Mexiletine i'm taking, I sometimes have a phenomenon now where I'l be having a flare, but won't know it because I can't feel it. For instance, tonight, I ran 3 miles at the gym. I had a modest flare afterwards, but to know if it was occurring, I had to raise my leg and visually look at the knee. I couldn't feel it. Also, even though I have discoloration in both knees, it seems to only flare now in the right knee. I don't know if that's particularly relevant. I was wondering if anyone else experiences anything similar to that?
I'm also curious how the symptoms present in people's feet. Sometimes my feet will feel warm, but they don't look the same as my knees. I get mottled coloring (purple/red) and blotchy erythema in my knees. That doesn't occur in my feet. If my feet feel warm, they will look a dull red on the sole. That's about it. It's also only on the sole of the foot that touches the ground and is not present in the arch or on the tops of my feet. To be honest, i'm not certain my feet feeling warm isn't psychosomatic. Everyone else seems to have EM in their feet, so the power of suggestion is very strong.
Hi Carter, for me, my feet are affected the most, sole, but also the top of the toes. It's very red, very hot and very painful without my cream ketamine and turmeric. It is with sandals. With tennis, the little I tried walking a few minutes, it's the whole foot including the ankle that are affected. The knees, that's just when it's hot, and it's just red and hot, but not painful.
My flares are triggered among others by walking, but as long as I continue to walk it's bearable. This is also when I stop it's atrocious. My doctor told me it was when the em was due to venous insufficiency it did that.
I definitely feel the sensation before I notice the redness. My redness is primarily in my toes and couple of inches higher. They will become a dusky red. I also have Raynauds which is why I can’t take the Mexiletine. I will have the mottled look to my feet when I am cold. If I am standing out in the heat my knees definitely get warm and red. It feels hot on the inside but my husband will say my feet are just warm to the touch.
Bootcamper - do you have any updates on the cream? im very curious to hear if you are having similiar success to the mayo participants
Hello Scanfield1,
I do think I'm getting some relief with the cream, I really do. It doesn't seem to help with a really bad flare, but if I can catch it early it seems to make a difference. I'm seeing a difference in the look of my feet when I take my shoes off after a workout as long as I put the cream on before exercise. It's not a cure all, but seems to be helping.
Thanks!
awesome, thanks!
Greetings to all;my first interaction with the group but I am excited to learn and help when I can. Like all of you it has been a a long road here but after finding the source of my pain I am truly blessed to have found this organization. Many thanks to my mentor Maddalena for connecting me with the options available. I am currently getting relief using a weekly Procaine IV and several herbs-most importantly Butterbur. I just started using Midodrine cream; the AM swelling in my feet was noticeably better after just one day. Hopefully you will get some relief from it as well.
Leslie
Thanks for the info Leslie! I started taking Fever Few about a week ago and I'm thinking I'm getting some relief from that as well. Do you know the theory behind Butterbur? Thought I might look into it.
Thanks!
A pain specialist suggested taking almotriptan (used for migraines); the side effects were awful but did help with EM symptoms. Butterbur is a popular herb for preventing migraines and most come as a combination of butterbur and feverfew. No nasty side effects with butterbur either. Good luck and hopefully it will help!
Bootcamper said:
Thanks for the info Leslie! I started taking Fever Few about a week ago and I'm thinking I'm getting some relief from that as well. Do you know the theory behind Butterbur? Thought I might look into it.
Thanks!
Very good, thank you!!! I really appreciate the insight. It take a village, that's for sure! :)
Thank you. So, how do I prepare the mix? :O i'm excited about it... the tablets are 10mg each... how much cream do I use? :/
Beth L said:
Sharitypopo, If you Google "compounding pharmacy" and the name of your city or state, you will get a listing of pharmacies in your area that will compound the amitriptyline/ketamine cream or the midodrine cream once they receive a prescription from your doctor. These pharmacies will also mail you your compounded meds on request. Hope this helps,
Beth