Diagnosed with em

Hi All,
I’m Mike from the UK.
Diagnosed yesterday with em.
I’ll be honest it’s a relief to finally hear a dr say you have got something wrong after seeing 3 drs that didn’t have a clue.
For 3 weeks I took pictures of my hands every evening and put a jacket on for the appointment.
My hands flared up in there so now more tests to find out if there is an underlying problem.
I’m on morphine as it is continuous in both hands.
I don’t take it during the day just straight after work.
I feel all your pain I’ve had surgery etc before but never felt pain this bad.
Truly awful.
The morphine I take is only 10mg so I can still function but I can now look the drs in the eye that said theres nothing wrong I was just after strong meds.
They made me feel like a drug addict when inside I was burning alive.
Im Officially not nuts there is something wrong…

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Hey Mikky,
And by hell, ain’t that just such a relief!!! To finally have a diagnosis. Some would say having a diagnosis of such an illness is a bad thing, but when you’ve been hunting and not getting any answers (or more ‘getting nothing but doubt’) finally having a diagnosis is such a pressure being lifted. To be honest I wanted to go back to all of those former Dr’s and stick it up them, but I haven’t. But just to know I am not ‘as crazy as a box of snakes’ and all those pains, all those sensations are real and not simply a figment of my imagination was simply a pheww moment for me. You are not alone, that I can guarantee you.

Congratulations, you’re just as crazy as the rest of us.

Merl from the Moderator Support Team

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Hi Merl,
Thanks for the welcome.
I’ve been made to feel like it’s all In my head,a junkie that wanted stronger drugs.
To finally be told what it is by someone that knows about it feels great even though it’s such a painful condition.
Hopefully I’ll find a combination of meds that make it more comfortable atleast it’s only hot in the UK for a month or two lol

I had to change my career after 30 years. I am a RN. Not only was I told on my last visit with derm, there’s no cure for this…and your face looks so much better! Well, maybe because I’m not having a flare-up! I am working through some anger, anxiety, and depression. It’ll take time, but, EM is a life changer. I am very glad you at least got a diagnosis.

Welcome to the best EM site there is!!! I have been here for the last 1 1/2 years and it has saved my life. Everyone here on the site has experience, and ideas, so really take this on, knowing also that you will have to be your best advocate.

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I was once told by a dismissive dermatologist that there was nothing anyone could do for me. A month later a different doctor, who worked in the very same medical center just 2 floors above that guy, put me on medication that more or less ended my flares.

It’s not accurate for a doctor to say there is “no cure.” According to published research, a substantial number of EM cases do resolve. Incurable would mean no cases ever resolved.

Hi Mikky, I am so pleased for you that you have a diagnoses. It does make all the difference, now you need the right meds to calm the EM. You have had a bad Summer for coping with EM but normally the UK can be a good place to live so I hope for your sake the Summers go back to normal. Are you in the North or South? Quite a difference in temps.
I am so pleased for you as I can remember the joy of knowing I had EM.
Cheers Iris

Good morning .I’m so happy you got diagnosed.I was diagnosed almost a year ago and I’m new here for months I’ve just been reading from the outside .I’ve never joined anything like this so I’m a bit nervous but I am so happy to know I’m not the only one that goes through this .I have flare ups daily of hands and feet .I understand your pain

I’m in the south but for the next 5 months it will be cold so I should be a bit better.
I just get strange looks as I never wear a jacket.
The only time I have worn one this year was to my consultants appointment as I new my hands would burn,swell and go bright red.
Its great knowing you guys are here as you all know exactly what I am going through

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I just get strange looks as I never wear a jacket.

What about a sleeveless vest? I had a couple of those when I was younger. It was essentially a jacket without sleeves. It’s not a very practical concept for most situations, but might it help you out?

Hi Carter thanks I have purchased a Gillet today which is sleeveless so I look less of an idiot now lol

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