Hi! I am pretty sure i have EM. But it appears the major symptom that differentiates me from most EM sufferers is that I don’t have this burning intolerant pain people describe. I definitely still get the lava colored red hands when I get the flare ups, and have a light burn feeling to them (pain of 1 on a scale of 10), but it is not like this stove top burning pain many people state they are having.
With that being said, I am wondering what type of drug I could take to alleviate or rid flare ups that create that awful redness?
I’ve research a lot of medications. Many of them would address the pain. Since I don’t have that intolerable pain and want to address the visible flare ups, does anyone have any suggestions as to what drugs might improve or rid those?
Any insight to all my thoughts are truly appreciated.
My son has had EM for 2 years now, and he has always had 10+++ pain with his hand and feet flare ups. I don’t know and haven’t heard a lot about how you’re symptoms are presenting. Try out private Facebook group called “Erythromelalgia - Medicine/Treatments, Information and Support”. Ask to be accepted in this closed group and re-post your questions. It is a large network and might be a great resource for your questions. Good luck.
U have never heard of painless EM? I have the other charastestic symptoms like red toes when warm weather, enlarged veins etc. But no pain. Do u think its possible to treat that?
I had what now appears to be EM for about 30 years with no pain. My feet and hands would turn red, swell and just be hot and uncomfortable but there we no real pain. The last 3 years (about the time I hit menopause) the flares became pretty much 24/7 with immense pain. I didn’t even realize prior to the pain I had EM or an issue other than my hands and feet got hot. I think you may be hard pressed to even get a diagnosis without the pain. Most treatment is just for pain relieve, there isn’t much flare relief. I take a aspirin based anti-inflammatory (for pain relief), a serotonin inhibitor (for pain relief), Lyrica (for pain relief), Tylenol 3s (although this is for pain it does nothing for EM, I take it for my Ankylosing Spondylitis and I still wasn’t getting much relief. Then I watched a documentary on CBD oil and they talked about Epilepsy & seizures and how they were a neurological condition. EM is a neurological condition. I thought it couldn’t hurt to try. CBD Oil made the biggest difference on my flares, not just pain relief but actual reduction in flares and recovery time when I did have one. I haven’t really tried out the wearing shoes, etc. and I still sleep with a fan blowing on my feet but from where I was to where I am is a world away. I do believe it’s the combination of drugs though, not just the CBD oil.
Yes, i have also heard very positive thinks about the CBD oil, and for someone it has helped to reduce the flares aswell. But where did u buy the oil, did u get it from the doctor?
Natureslove.org Someone on this site told me that is where they get it. I use the drops you put under your tongue, one drop 3x day (6am, 2pm 10pm) It significantly reduced my flares as well. FYI - the orange and peppermint flavors aren’t too bad or at least you get use to them. The unflavored is yucky but I had to buy it last time. They had them produced but they were waiting on testing so they couldn’t sell them until the results were back. Also $40/bottle is almost 1/2 what many others go for but the quality is there. I’ve tried other more expensive brands that didn’t work at all for me. CBD oil is like the wild, wild west. There is little gov. regulations because it’s considered a supplement. I was really glad someone in this group already figured it out. Good luck!
Very very interesting, and thanks for mencion that.
But what do u mean by «it reduces the flares as well». Is it like that you are getting alot less flares? And does it help to reduce the redness on the toes/feet aswell?
I have no pain, but it would be very interesting to try out, if it helps against the redness and flares.
About 2 months after being on Lyrica 75 mg 3x day and only seeing very minor pain relief (still flaring all day) I saw a documentary on CBD oil. They were talking about how so far it had only been approved for seizures and epileptics but they mentioned it was a neurological condition and had something to do with the blood vessels (sorry, I’m no doctor). EM is a neurological condition and also has to do with the blood vessels so I asked around on this site and found quite a few people took it and had good luck with it. I was skeptical but the doctors weren’t helping so…
Prior to starting CBD oil, I was doing cold soaks at least 6-10x a day, staying inside in the air conditioning, basically doing nothing because it wasn’t worth the pain/flare. Within a week of taking the oil, I was pretty darn sure it was making a difference. The pain was significantly less. They were still flaring and mostly red but not as much. Within a month, not only did I have almost no pain (especially at night which was I practically cried over when I realized it) but the coloration on my feet had greatly improved. I could get up and do things, like make a quick dinner etc, go outside in the summer for a short walk, etc. I’ve been on it a few months now and I actually wore tennis shoes last Saturday for about 5 hours and I was on my feet the entire time (indoor and outdoor). When I got home and took them off, my feet were barely even red and recovered within 5 minutes. I’m not saying they are never red or never flare but I haven’t done a cold soak since I started taking it. I’m probably at least 60-70% flare free where before I was maybe 10%. That is so much more than any doctor has done for me and I haven’t noticed any side effects. Just keep in mind though, it is a buyer beware market. Good luck.
I take it consistently everyday 3x/day. If I miss a dose I might get a flare in the next 24 hours that otherwise wouldn’t normally cause one. I’ve tried quiting the Lyrica too but that results in more flares too so it seems to be a combination of the two drugs that works.