Hi everyone,
Last week I was finally diagnosed, I am relieved but also very sad that I now have to live with this. My doctor thinks I have idiopathic EM since all my blood work came back normal. However, my doctor said she has only seen cases of EM that are secondary to other diseases such as cancer which really freaked me out. I can’t help but think that something is really wrong with me like I have an underlying terminal disease that hasn’t been found yet. I had a CBC and a bunch of autoimmune blood tests done all was normal. I have read that sometimes EM shows up a few years before an illness which is also very scary. I first noticed symptoms of my EM 5 years ago but it got worse over the past year and pushed me to get some help. Is it possible to ONLY have EM and live a long life? Possibly since I first noticed symptoms 5 years ago I don’t/won’t get another disease?
Thanks,
Grace
I was diagnosed 20 years ago. I have no underlying disease. I went to the Mayo Clinic for diagnosis. If you have any questions feel free to ask me, EM is like being in hell. I am sorry to say. I have had some decent times, but I am pretty much shut in
I wouldn’t worry about EM being indicative of a serious illness a few years down the road. Sure, there are people for whom that’s been the pattern, but I don’t believe there’s any evidence that the two are necessarily connected. (Someone can correct me if I’m wrong.) It’s kind of like worrying that having the flu this year will mean you’ll get cancer in five years. Might, might not. Not correlated.
Which is different than finding out if there are underlying current causes, which it sounds like you’re already working on. I’m just starting that fun journey myself.
I was diagnosed with idiopathic EM 7 years ago. And I asked my neurologist the same question but he says there is much misinformation about that. Don’t waste time worrying definitely get help and get your symptoms under control. You may need to try several different meds before you get the one that works for you. Good luck!
I’m a few years in and fortunate to be otherwise very healthy 
except for coexisting SFN. That might be something to test for if you want more insight as to what’s going on. Gold standard test is punch biopsy. I believe most docs like neuros / derms can do it - they need to send it into a neuropathology lab like Therapath. I wish I had done so sooner in my “em journey”.
Good luck!
What do you guys do in the winter for shoes? Mine had not spread to my feet until this summer so I’m not sure how it’s going to be this winter wearing shoes and socks I’m nervous…I can’t wear sandals all year
Hi there, My feet over react to cold so the socks and shoes are tolerable until a flare happens. It happens on and off every day. Unfortunately I have no tips, I just put up with each flare as they happen and eventually the pain stops. Cotton socks and good supporting shoes with extra room for breathability when the flares happen. For me, I have learned it will happen and that I will come out of it ok. If you have moments during the day now when your feet are cold, I would suggest wearing socks to acclimate your senses.
The cancers EM can sometimes precede are polycythemia vera and essential thrombocythemia. Both are slow growing myeloproliferative neoplasms. You are well outside the normal age range for each and they’re unlikely to be in your future. EM is not known to precede other types of cancer but can be a rare side effect of chemotherapy.
It is not only possibly, but most likely, that your EM is not a harbinger of another disease.
Hi Gracie, Rejoice that you’ve finally gotten a diagnosis. For most of us here, It took several years and several doctors to get a diagnosis. I, too, have primary EM.(inherited). I did a 23&Me dna test. When I got it back I looked in “the raw data” and typed in SCN9A which is Erythromelalgia’s genetic designation. There it was.
This group of warriors tutored me on what reduces the burning, prescription options, and helpful tips on cooling. This won’t kill you (not that I know of);but you MUST learn how to control the pain. I live a nearly normal life (kind of)The flares can come at any time; but with EM tends to flare late afternoon and in the evening.
Anything I can do to help, just ask. You’ll be amazed at the kindness and generosity of this group. God bless you.
Patricia aka Satochan
What specific mutation do you have on the SCN9A gene?
Have any of you had EM for many years and not had it get worse? I’ve been reading stories of people’s EM that started just like mine (flares only brought on by heat mostly in the late afternoon) and now they have 24/7 flares which scares the hell out of me…
My EM worsened consistently for the first 6-9 months that I had it and over the past year it has gradually improved, most rapidly since I started using capsaicin cream on my feet every night in June. Since doing so flaring stopped completely in my hands, ears, and knees, and is just about completely gone in my feet. I am in medical school and am on my feet all day and I haven’t had any problems thank god. With that being said, mine did not improve on its own and it took months of diligent trial and error of medications to find a few that really help. My docs that are treating me for it think that it will completely go away in my case, I think about 10% of cases resolve completely so it can improve on its own and definitely can with treatment. Just take it all one step at a time, stressing out a lot about it and thinking about what could happen will only make it worse (easier said than done, I know). At my lowest point I just took everything one day at a time and it really helped.
Joe,
Did the Capsaicin cream help reduce the actual flare from happening or did it just help the pain? I’m really hoping I can find something that can stop my flares from happening, the capsaicin cream is very intriguing to me since it’s not a pill I have to take. I’ve been getting EM flares on my legs for the past 5 years but in the past 6 months it spread to my feet which makes it very uncomfortable to walk long distances (something I enjoyed doing so so much). I will bring the capsaicin cream up to my doctor. I am currently pregnant so I will probabaly wait to start it after the pregnancy.
Grace,
It stopped my flares completely. I never had too much pain so I was more looking for something to get to the root of the problem. It is a rather intense therapy though. It’s extremely hot and makes your feet burn terribly temporarily. I started running again when I started using the cream to further desensitize my feet and it was miserable for the first two weeks but now I run nearly everyday and have no issues. Honesty though I would recommend some more low risk options, capsaicin is intense.
Grace,
I was diagnosed almost 7 years ago with all the very same feelings you mentioned above. Exact diagnosis, no underlying disease, otherwise perfectly healthy. I felt hopeless and scared. My neuro is amazing. We walked through lots of different treatments and tried lots of different treatments. From RX’s to natural remedies, etc. I highly encourage you to review Bob’s Protocol. It’s on this site I believe. If not, private message me and I’ll walk you through it. It was life changing for me. I still deal with symptoms, but nothing like I had. I work every day and in fact I now have a standing desk and can tolerate it most of the day. I’m active, work out (not as much as I should, lol) and play golf… in the heat! Don’t lose hope sister, I promise this is not the end!! Using cooling methods only created a rebound effect for me. It’s all I focused on and I was miserable. While I know this isn’t for everyone, since your case sounds identical to mine, I thought I’d share.
Hi Bootcamper!
thanks for the reply you honestly made me feel much better and gave me some hope for a bright future! I tried bobs protocol for about two weeks and didn’t see much of a difference I am willing to try again…how long did you need to do the protocol before you saw improvement? What water temp did you use and how long did you soak?
Please be sure you dont have lyme disease or related coinfections like Babesiosis and Bartenella, there are many others as well. These infections were the root cause of my EM and many other disabling conditions.
Well, yeah, sandals all year. But you get used to it. I have Raynaud’s too so I’m used to leaving the house in socks and shoes then changing into sandals. Lots of schlepping and preparing for a zillion different scenarios. You should see my backpack on winter bike rides it’s a whole ordeal
I was diagnosed with primary Erythromelalgia about 25 years ago.(I am now 60 yrs old) I have had to learn to live with it. I have flares every day. I work full time in an office (which has great air conditioning). I get through the day without flaring if I stay off of my feet and keep myself cool. I wear sandals all day, year round. In the winter I wear shoes or boots only from the car to the building.
This is my survival list:
Keep COOL. (At work and at home, I have fans everywhere and air conditioning.)
Dress in lightweight, layered clothing. (If you can keep your core body temp low it should help.)
Avoid wine or any kind of alcohol ( it is a vasodilator and will positively bring on a flare!) Same goes for vinegar and hot spices.
Always keep flip-flops or sandals in the car or in your handbag. (My favorite sandals are TEVA, with adjustable straps that can be loosened when my feet swell up during a flare)
Avoid hot beverages in the afternoon. Flares are usually worse in the afternoon and evening.
Avoid hot environments.
I have found that early morning is the best time for any physical activity or even shopping. My feet are normal for a few hours in the morning every day, so I plan accordingly.
I lead a very productive life in spite of my limitations.
The hardest thing is people around you have no idea of what you suffer with every day. I don’t think anyone can understand the pain unless they have experienced it.
Keep cool and stay positive!
yes… i was once so active… and ha this mostly i silence for over 10 years now. been in treatment for depression clinical for 3 years now but even doctors do not take my pain very seriously it is the only thing i can think about most days it really is hell on earth… just hell… why did this happen