Hi guys, I’m Ann Marie from Ireland,nice to meet you all,Well so here it goes I’m 33 year’s old and have always had discoloured hands and feet until 5 year’s ago the burning began,I always had unusually hot sweaty feet too but my hands swell turn red,veins popping out and sun burn like pain,my feet and hands feel like balloons ready to pop,I’m struggling in my job in childcare and worse again strict dress code(uniform is a killer)I spend a lot time alone cause of my flares and the either burning sweat or chilling chills after the burn ,I haven’t been diagnosed as of yet all doctors have never heard of it and dismiss me I’m awaiting an apt with a neurologist but could be waiting months,I just feel trapped and uncomfortable in my body all time,cancelling events cause of flares,I know you guys know how I feeling for most part,I’m just so stressed over my job and the pain in my feet I’m just struggling along feeling sad most of time,loads blood tests done and me and mri with nothing unusual showing up leafing me to believe it may be primary case,I wish I could find a professional to diagnose me Ann Marie
Hi Ann Marie,
I can relate to all you’ve said. Mine is 3 yrs now and I’m 64 retired. There is no way I could hold down a job. I saw a dermatologist recommended from this site Thurs, have been passed around almost 3 yrs now to every specialty doctor, was told they can’t help, go home, put feet up turn fans on and wait for another referral back to rheumatology, maybe take 3 months. I just started crying. Most days I hurt so bad. I have found out I can take more than I thought but i’m reaching a bteaking point. Am waiting to hear from Mayo in MN. All I can say is please hold on. There has to be an answer for this.
My heart breaks hearing this so sorry you’ve to go through this too,hopefully we will find hope through this group,I hope you get some answers at your apt,It’s hard to explain to other people how it actually feels and the life restrictions we face,I’m so confused about work cause I’m fine when I’m not flaring but s bad flare can last up to 6 weeks it’s draining,where abouts do you live?
When our son came home from school with red hot swollen hands, we literally googled it, found “burning man syndrome” and made an appointment with his primary doctor. He was diagnosed that appointment. So I don’t have much to offer when it comes to an actual diagnosis. Bring in printed case studies and go onto Facebook and join an Erythromelalgia group- “Erythromelalgia-Medicine/Treatment for Information and Support”. I’m sorry you aren’t feeling well, I know from an outside perspective that it is very very difficult to live with day to day. Then not having support or answers from doctors and community (because it’s hard to see the suffering and pain) because its so unknown. It is listed as a “Rare Disorder”.
Thanks for reply scatter you,what age is your son? So sorry to hear of his suffering,I will definitely look into that thanks for the advise,where do you guys live?that’s amazing you got a diagnosis so quick,everything in Ireland is so slow and I can’t find anyone with my symptoms either!xx
Take some photos.
Find a doctor you can get along with.
If confirmed as EM find out if it’s primary or secondary. The treatments will be guided by that.
Current treatment options are generally at best partially effective unless you’re fortunate like Carter!
I find breathing, softening and allowing shifts me from resistance to acceptance and at that point the pain reduces. You could call that meditation but that’s just a label. There is published evidence of the efficacy (benefits) of mindfulness (better termed mind-lessness) meditation for chronic pain. As well as for most other things too. Alot of my patients with anxiety and depression are doing well using this, without medication.
There are plenty of You Tube guided meditations.
Hi thanks for all the great advise Stan I really appreciate it,i actually was gonna take up mindfulness class as I read it would help try,every doctor has dismissed me mistaken it as raunaurds or else they have never heard of it,really frustrating, I’m struggling to hold my job down with it,It’s seems like Ireland are very much behind the times,neurologist apt next and I’ve some pics to show an example,how long have you had it?and your journey to your diagnosis
Maybe there was some luck involved, but I also took a different approach. I diagnosed myself within weeks of symptom onset, then tenaciously lobbied the physicians treating me to accept it. I would not take no for an answer and was unafraid to read the riot act when they were wrong. I acted out of urgency due to an innate feeling time was of the essence and there was but a narrow window of opportunity to halt or reverse symptoms.
Was my gut feeling correct? I don’t know, but my results have been good.
Hi again Amo
Suggest with meditation to take the approach of “shifting” into the stillness of the present moment. This is not an efforting/ strain as its everyone’s natural state behind the largely “BS” story of our mind’s thoughts which could be seen as a smokescreen to our natural self. This may sound like BS itself if trying to understand it using the mind. A number of progressive medical schools are now teaching mindfulness and I see lots of patients with a myriad of conditions who are already using it, mostly to great effect. If you are open as it sounds like you are, that’s the key to shifting into the space of now. Do a You Tube search for Rupert Spira or Eckhart Tolle, amongst many others. Rupert calls it “awareness” and Eckhart calls it “presence”. They are using different words for the same thing. This is not about self improvement, rather its a reconnection to what’s behind our thoughts. The mind is full of anxiety and doesn’t like letting go of the story; most of us have grown to believe we are our thoughts. As the shift happens you’ll find yourself progressively detaching from your thoughts, watching them without judging them, which won’t lead us down the “rabbit hole” of misery. It’s a great antidote to judging our pain which actually just magnifies it.
In the past I would have been in desperation with EM pain but now I feel and notice it but mostly can just ignore it. I still take pregabalin and ALA (alpha lipoic acid) which allows me to sleep close to normally. I self diagnosed early this year having been aware of EM for some time, and after my own neurologists had no explanation.
Best wishes and see how you go with your upcoming appointment. Find a doctor who is prepared to support you; they don’t need to be an expert on EM, provided they are open and willing to do some of their own research. Just to reiterate, its important if it is EM, to exclude secondary causes as they need to be diagnosed and managed.
exactly. You are a great case control study of one as my neurologist said of me!
I can’t diagnose you from down under in Melbourne but it sounds highly likely to be EM.
I suspect mine is probably primary as my first episode was about aged 10, then many years of nothing then occasional burning feet/ ear after exercise or significant temperature change going from cold water (sea or river) into warm room or shower. I haven’t got round to having genetic testing as yet but expect to arrange that after I get back from an upcoming holiday. My sister just told me she has had finger symptoms and my dad can recall at least one severe episode of burning feet.
Fair play to you for fighting your case with the doctor’s,I think I’m getting to that stage too that if I dont start gettig help I need,I’m going to demand it,because if I don’t I’m not sure were I’ll end up,my mental state has declined and every flare adds to it!wat do that expect me to lock myself away rest my life like it’s doing already, thanks so much for text,how are your flares and what treatment do you use at minute? Amp x
Yea Stan I also vaguely remember as a child on odd occasion my hands would be so hot if get nervous about ha ring shake hands with them,for years my brother has questioned my crazy coloured hands but I never linked it all in till the 5 years ago wen burn started,how do you cope with yours?I just feel like after 5 years or over I’m coping less and less
Great advice again much appreciated,It’s so true dough I over hear start sweating and o think o make it even worse by panicking over it happening,gonna get checking this minfullness out and see if I can make it to a class
As Stan alluded to, I’m doing well. I don’t really get flares anymore. I take a two drug combo of mexiletine and propranonol. The two drugs together provide near constant, complete coverage. Symptoms only breakthrough rarely and those that do are easily controlled (I basically just have to sit down and symptoms promptly go away).
It may be worth noting, my symptom onset was not insidious over many years. It was explosive. I went from not having any symptoms, to having very severe symptoms in just a matter of days. Among other things, that makes me somewhat unique.
I must mention them drugs to my doctor at next appointment and hopefully it’s something that our country uses and it’s been approved for Irish use,that’s so positive to here how your feel right now ,there is a lot of drugs we are unable to get I Ireland unless it’s fda approved,well my burn came shortly after I had surgery done,about 3 months was when I first felt the burn about 5 years ago now a d I still haven’t a diagnosis I’ll have to keep fighting my way through thanks take caresorry I meant approved by fda not 'dad ’
I’m sorry it took me a few days to get back. I have been accepted at Mayo in MN and am waiting for follow up on date. I have found I can take more pain than I ever thought possible and it is a form of what someone above said, I make my mind think about something else, i write a lot of poetry and enter contests that challenge my thinking. It works most of the time, but lately the pain gets overwhelming. I asked for the mexiletine and was told no doctor in the U.S. or anywhere would prescribe that. I do take Gabapentin and it’s been upped to 1200 mg a day, I can tell no difference. Aspirin makes mine worse. The clinic at Mayo is supposed to specialize in erythromealgia so am optimistic at this point. So far I have avoided pain meds as I am a 22+ year recovering alcoholic and I don’t want to have to but in the middle of s good flare I’d take a morphine drip anf and I am allergic to morphine. I’ve also thought amputations would be a relief but aftet flare I know how crazy that sounds. I hate for anyone to have this but am glad I found this group.
Hi Wky lovely to hear you find writing poetry helpful. I had a patient who was 'burnt-out" psychologically who said she liked to climb up a tree and write poetry. (She wasn’t “out of her tree” so to speak!)
For myself I like to be on the river fly fishing, on the water or in the mountains but given I’m based in the city that doesn’t happen very often. Sitting or walking in the park, or just listening to birdsong is really nice. I also love jazz, rock or chill music. But each to their own!
I guess it’s about being in the stillness of the moment and not following the anxious thoughts down the rabbit hole if you get what I mean…
Doesn’t ice work? I basically kept myself on ice until a pharmacological solution was found. Anytime I had a flare, I iced to avoid having to endure any pain.
The first year I stood in cold water for relief. The neurologist told me never to do that because it would damage nerves and blood vessels as well as skin tissue. I still did it when pain was real bad, then rhematologist said the same thing. I do use ice packs I freeze in freezer but sparingly for the same reason. I’ve also noticed after doing these, the flares are worse, maybe rebound pain.