New member from Australia :)

Hey everybody,

As I read other people’s stories, I can’t help but cry aliitle and let it all out. This is an emotional journey for all of us.

I was diagnosed with EM a month ago & stoked I have found this group (well my doctor did).

I’m a bit nervous about writing about myself, but here it goes…

It’s been 8 years of pure pain and torture and people around me having their own opinions of what they think my condition is, they are so confident in what they think, when I knew they are wrong. I don’t know yet if it’s what I’m eating, drinking, doing, I have no idea. All I do know, i was diagnosed,

I know nothing, at least now I have something to work with. Although the past 8 Year’s have been hectic, I feel I’m at the beginning, the beginning of a better life now that I know. I cannot wait to speak with others who have this condition, I need a place to talk and express as I’m sick and tired of people telling me it’s what I eat, it’s the shoes I wear, it’s stress, it’s my weight, or my favourite you have gout!!!

My feet are a problem, sometimes one foot, sometimes both, regardless of one or two it’s hard to walk, the pain is excruciating and they are so so hot. So hot, like fire! When both flare up (an episode) I cannot walk. Thankfully I only have my right foot flare about 3 times a month and it puts me out for a couple of days, but hey it could be worse & I like to stay as positive as I can. When both feet do a number on me that sucks, but I’m thankful it’s not everyday like some people get.

What I do know is, time can work this out, (I hope) or at least I will learn how to manage EM the best way I can, speaking with others will help me, knowing what others go through will enable me to relate and through this I believe there will be a positive outcome.

I’m 42, I’m fun loving, have a great outlook on life. I have many best friends and great family, but that doesnt mean they all get what’s happening, even though they try. I hope to educate them as I educate myself.

I am only just realising I have a rare condition, I am green but I will survive.

I work in the wine industry, I love wine, I am a wine nerd.

I am an open book and am not a judgemental person, I love , love.

My name is Ash, but my friends call me Madness.

Thank you for listening xxx

1 Like

Welcome! I hope you find the community helpful and supportive. Go easy on the wine though. Alcohol is a known trigger for erythromelalgia symptoms and alcohol abuse can result in peripheral neuropathy, a potential cause of secondary erythromelalgia.

EDIT: Just to be clear, I wasn’t saying you got EM because you abused alcohol. While alcohol abuse is never good for one’s health, it could have especially negative consequences for someone with EM through acquired or accelerated peripheral neuropathy.

Hi there, alcohol is a trigger for my EM - in fact the only way guaranteed to cause a flare. You would probably have already made the connection if this is the case for you - I hope not since you have a passion for wine. I guess we all learn what triggers us over time. Good luck.