I tried Aspirin and Gabapentin but they did not help because i do not have "Pain" with my EM. I experience more of a vasodilation and heavynesss in the arms while my hands get very hot and red. Most medications i have seen being recommended are for pain. Is there anything i could try to reduce the flare ups of the warmth/redness and vasodilation in my hands? I also experience EM in my feet and ears but my hands get hot and red very easy compared to my other extremities.
Dear Deon ,
EM management is notoriously difficult. Medication alone does not suffice and lifestyle changes such as diet, jobs etc., cooling tactics e.g. fans, cold water immersion and ,most importantly , minimisation of triggers - heat, stress, fatigue and exertion are vitally important. Regarding medications - a polypharmacy approach is the best way forward with all symptoms being addressed . Its pretty much trial/error on finding what works for you. Aspirin isnt given 100% for pain but for dilatory purposes - in some sufferers it can help but for others it just exacerbates. . I know you were seeing your rheumatologist , how did that appointment go? Have you actually been diagnosed with EM ? What did he think about the lack of pain ?.
To answer your question , two things you could try for the warm flare - calcium blocker (CCB) which can be tested by trying magnesium supplement .If it helps you then diltiazem is usually the medication given. CCB interferes with vasoconstriction. Antihistamines - antihistamines sometimes help a little with redness and itching http://forum.livingwitherythromelalgia.org/forum/topics/antihistamine...
In my experience , however, the flare ups you describe are best helped by cooling tactics and minimisation. Its often easier to try to minimise flares than to deal with them. Investigating possible secondary conditions that may be causing these painless flares would also be wise. Have you been tested for autoimmune disorders , vascular problems, even cholesterol, possible allergies, or are you taking any medications? The no pain is confounding! But im glad you are not in pain - my goodness. Does heat induce the flares?
Bless you - I know you have been struggling with this for some time. Lots of questions I know, but i think you know me well by now ;)
If you need some more tips on cooling just say :)
http://forum.livingwitherythromelalgia.org/forum/topics/cool-tips
We will share this out to the community for you- hopefully our members will have some answers for you
Big hug
x
PS: Hope you had a good birthday. I beat you by 12 days lol!
According to a Rheumatologist, Neurologist, and two Dermatoligists, i have EM. Just from what i described and have shown them. I have done countless tests of many kinds for over 1 year. Nothing has come up unusual except my ANA Antinuclear anitbodies test came out posititive. I get flares in my hands mostly which turn red and get hot, and at the same time from my elbow down my veins bulge out very big, it feels like someone has put a rubber band around my arm, alot of pressure feeling and heavyness. It is extremely irritating. My feet and ears experience this but rarely. Flares occur from mainly temperature, but also Physical activity, fatigue (later in the evening flares up easy), stress ( i can be doing an exam in class and flare up), and certain foods. I watch what i eat and have maintained a diet which helps my body from overheating. I avoid Nuts,Sugar, and Processed Grains.
Thanks Mads i will tell my family doctor about Calcium Channel Blockers. But maybe i wont do that because magnesium almost seemed to make it worse, my knuckles were very red and i actually experienced more flare ups. Thanks for letting me know there is a connection between the two. Yes im not taking any medication currently, i tried gabapentin and aspirin but both did not help. I took a drug called "Accutane" which i believe is why i have EM now. But that i dont know forsure.
You dont have to look into this issue tho, i will just scan this site from time to time. You do alot of work as it is, thanks for taking the time to read my post tho, i appreciate it. I will continue doing research and questioning my doctor. I will make a post if i ever find a medication that works or some good news :D My right hand is actually starting to get very warm from me trying to think hard about all this stuff, lol its a never ending battle.
But yeah my fingertips are permanently red now. When i experience a flare my hand starts to get warm, fingers turn bright red, knuckles turn red, veins dilate in hands and my forearms. Flare ups rarely affect my ears and turn them bright red, my knee caps, and my feet would be my second most occuring spot. My feet rarely experience it tho cause there always cold, where as my hands cold too but they seem to get heated up
Bless you Deon.
OK, Accutane - thats interesting as a few of our members think they also developed EM through its use. In fact FDA have a couple of reports about side effects/reactions
http://www.fda-reports.com/accutane/reaction/erythromelalgia/page1....
How long ago did you stop that medication ? Stay strong, a lot of medication induced EM subsides. We know several cases of remission.
Previous accutane posts
http://forum.livingwitherythromelalgia.org/profiles/blog/show?id=6418...
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?21149-...
Deon , you say your ANA were positive, what were they positive for?
Also- you mention exams. That stress cant be helping you. Maybe your Dr can advise you here and help you with anxiety. Hard to do I know but relaxation, mindfulness tactics help some folk.
Thinking of you
Stay in touch :)
i was ANA positive for it just showing an unusual amount of anti-nuclear antibodies in me. but to answer your question for some reason from that they cant tell what that means i have.
I stopped taking accutane in 2010. During accutane i had an enormous amount of side-effects that were very bad, i also had persistent facial flushing and would start blushing in social settings, it was very odd and not me. I noticed EM symptoms in 2011, and they have stayed since. So 5 years ago i took accutane. And thanks alot for posting those medication induced EM articles. I will check them out right now and read them :D
I, like you, have no pain with my EM…and I’m very thankful! I try to stay off all the drugs because I’m convinced its the drugs that got me in this mess in the first place. Right now I sleep with a fan on my feet, have a fan under my desk at work, don’t wear socks EVER…even as I look out and see 16" of snow through my window. I’m working on my AI issue through diet and hope that if I can get that figured out, the EM will go away. Good luck to you!
Hi Deon,
I’m sorry that I won’t be of much help because, like you, I seem to have EM without neuropathic pain, at least for now, and am also looking for appropriate medication.
I have it mostly on my feet but my hands, ears and nose get very warm sometimes. If aspirin (1000 mg/day, a bit much) did anything, was to provoke unilateral flares. Magnesium made my feet swell so much that it became painful (vasodilatory pain, I think) to walk but the pain eventually faded away with cooling and walking a bit. They seem relatively normal now, after 2 weeks after stopping the Mg + avoiding Mg-rich foods.
My doctor wants me to try gabapentin but since it seems to be mostly for pain maybe something else would be more adequate. I haven’t tested my ANAs yet. I’m getting more sensitive to heat, having to avoid more and more warm places that I used to frequent.
I think my EM may have been triggered by my 2 year long glandular fever, potential Ehler-Danlos, stopping of lamotrigine (or taking it for years?) or even intensive use of antifungal medication on my feet.
Good luck and take care, Deon and Mads!
Thanks Tarsius&Cindy Lou, yeah i tried Gabapentin and it did nothing for me since its for pain. And Magnesium made me worse too.
Thanks Deon! I have close people insisting I should take Mg in another form (instead of Mg pidolate) but it seems like a terrible idea to me; I really think it was the Mg that caused the vasodilation and swelling - it is a vasodilator after all, right?
Cindy Lou, I also sleep with a fan on, directed at my feet, and have a floor fan for using during the day. I actually got a little 9 inch fan to take to warmish places I should go to. I tried socks once because when my feet aren't flaring, they're quite cold, but they flared up within 15 min so I gave up on that, at least for that long. Does AI stand for anti-inflammatory?
Good luck to you all!
Hello
Let me chime in. It's about 4 months since I gave news of my condition. My EM is painless, too, and so, suspectable of not being real EM. Since my symptoms began with fishy swelling on veins of my hands and forearms, I suspected (after many months of trial and, especially, error) that Minoxidil might be the culprit. I then found some similar cases on the internet. Trouble is, these swollen veins in my case developed into full blown EM. Minus the pain, which is a big minus.
Since september, I decreased my dosageof minox with the aim of getting off it in the hand. I was advised to do this progressively. I am now 85% off. My EM symptomshave improved. I would estimate a 30% recovery... that throws me now into the other side a bit violently: Raynaud's.
NO DOC whatsoever has told me anything about the risks of EM with minoxidil. They are perfectly clueless, including in Paris. They could sure investigate this a little more seriously since minox is a BP drug, though not a calcium blocker whose effects are known, regarding possible EM.
I just wanted to warn those of you that might use minoxidil: this product may be responsible. Though i am not cured (far from it). But there again, look into minox side effects, and you'll see how slow the recovery may be.
Regards to everyone.
PS: I've never been on accutane but have taken for décades (and still do) topical tretinoin. I've stopped it time and again without noticing any real difference with my problems. Topical means some 1/10 (at least) lower concentration ratio compared with oral route. And by the way, isotretinoin is said to induce rosacea, that is symptoms in the face, not hands, nor feet. I remain skeptical about a link between EM and tretinoin.
I found out by accident that taking Ritalin stops the flares from happening. I still can't be in blowing heat so winters are worse. Before Ritalin (vasoconstrictor) though I could not stop the flaring even with no heat.
Just to explain the level of my EM i will, but yes im thankful for no pain, however i flare easily. My left foot is flaring right now, normal room temperature for some people induces a flare for me, i can be sitting in class and start to flare up, i now combat this by drinking a fruit smoothie before i go to class to stay hydrated which reduces my body heat, if i was to eat meat or any kind of fats/salt before going to class i would be flared up during the whole class. 1hour of hot red hands and dilated veins. Also when i go to a friends house and they dont keep their house as cold as i do, i sometimes am flared up for the whole duration at their house. My best ways to combat this though is to eat the correct food and drink enough water when i know im going to be in a temperature that my body cannot handle. I also experience flares every time i take a shower in the morning. From my knees down to my feet they turn bright red. From my elbows down to my hands, veins bulge so i usually dont let them hang all the way down when im flared. I keep them elavated to a degree in the shower or my blood will just start pooling in my arms and veins will bulge out and feel really irritating. 5minutes after my shower my Flare will stop if the temperature in my house cool
Notsuffering, about your Ritalin response, i think that might work for me, i remember when i tried drinking coffee and the caffeine in coffee is a vasoconstrictor like Ritalin, and it seemed to help slightly. Ill take that into consideration
Thank you for the warning, brm!
NotSuffering, do you have very cold feet between flares?
I ask because a neurologist prescribed a vasoconstrictor but I fear that it will worsen what I think causes my feet to be so cold between flares - vasoconstriction - and potentially causing stronger reactive hyperaemia.
No, never have cold feet, I have primary EM and secondary Raynauds - my quality of life has only improved - on Ritalin I have no flares...
That’s great! Maybe it could still be good for me, our logic isn’t always the body’s real logic 
Thanks 
Deon, you sound like me. After a shower, I prop my feet up in front of the fan until the flare subsides. I do catering and can often be found in the cooler, with my coat on standing with barefeet. This is such a weird disease. But thankful...no pain.
Tarsius said:
That's great! Maybe it could still be good for me, our logic isn't always the body's real logic :P Thanks :)
Deon.
When I first realized that my experience of periodic hot feet was outside of the norm, it was not painful. I felt warmth, pressure and bulging blood vessels in my feet. This usually occurred after too much exercise, really hot days or sleeping in a very warm room. Once this pattern was well-established and my disease progressed, my feet starting having tingling sensations along with the warmth and redness. but still no pain. As the disease became more persistent and the flares lasted for longer periods, the sensation of warmth was followed by burning and eventually sharp pains. I realize now that this was associated with changes in the color of my skin as well. Initially my feet looked normal between flares, but after a while my feet got more and more blotchy. I realize now that this was due to poor circulation and nerve damage due to the ever increasing number and duration of flares. For some of us, the development of EM is gradual and symptoms worsen over time as the small nerve fibres become damaged. In regard to not taking medication for pain because your EM is not painful, I would say that many of these drugs like Gabapentin, Lyrica and Cymbalta may also help reduce the intensity and duration of flares making the affected part less reactive. And this is very important. One wants to slow down the damage caused by repeated flares. If Gabapentin was not helpful, then a combo of a small amount of meds like Lyrica and Cymbalta may be efficacious in reducing your flares.
Best wishes–I hope you will have a full recovery.
Dragica