Hey guys I’m struggling in my job just wondering how do you all do it?I’ve used nearly all my holiday days up for sick days (bad flares)cause I can’t afford to take unpaid days,it looks so bad in work as I don’t have official diagnosis,I’ve applied to return as mature student and will need to work part time,dreading interviews and flaring up in a new job anxiety all over place about my future and holding down job would love to hear how yaz all do it really grateful to have found here and people who feel the pain and loneliness of this condition love Amo from ireland
Lidocaine 10% compounded cream has helped me. Rub on feet two times a day. Also, tricyclics antidepressant, for pain…Desipramine (Norpramin). 25mg. B vitamins. Use clay wrap I keep in freezer, got it at Walgreens. And, elevate feet as much as possible.
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Thanks for reply,I will definitely chat with my doc about these medications and cream,I work 8 till 6 on my feet 5 days week and have daily commute of over two hours,my body is struggling I’ve be flared most time the last two months so think it’s catching up on me are you diagnosed yourself?
Yes I did diagnose myself. No doctor wanted to help me, so I tried to help myself. Have you gone on theTEA website? They have info on there. It’s called The Erythromelalgia Association. They also have a booklet that might help you and your doctor. Although, I gave them to a few doctor’s, they usually weren’t interested. I think it cost $1.00. I also have Raynauds, its kind of a balancing act with both of these conditions. I also have neuropathy and peripheral artery disease PAD.
Lidocaine 10% compounded cream has helped me.
By the way, the drug I take and mentioned in the other thread, mexiletine, is an antiarrhythmic and orally active local anesthetic agent that is structurally related to lidocaine.
Personally, I use Burt’s Bees Peppermint Foot lotion. It really cools my feet! 
I also saw Dr. Davis at Mayo, he mentioned trying the Lidocaine patches on the top of the feet. I use both of these and it at least helps me sleep at night.
It finally came to the point that I could no longer work, so I am on disability.
Lisa
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I have never been able to work as I’ve had this since I was fourteen, I’m now eighteen and trying to get over my anxiety to call a disability lawyer and am going to start donating plasma to earn a bit of extra money if I can.
I hope you find a medication to help and wish you luck
Are you in the US? If so, I can walk you through the process without using an attorney.
Yes I am, I’ve already tried once and was denied, though I didn’t know about erythromelalgia then, silly what you know a few months later huh?
Also even if I do get on it I’m worried about surviving on it, the max is 750 a month cause I haven’t worked and have never been able to, how do they expect people to even be able to pay rent let alone eat? So far the plan is to stay at my parents house and pay rent to them depending on the amount I get, and my brother said he wouldn’t mind sharing an apartment with me when he’s grown up and ready to move out, but what am I supposed to do just rely on people all the time? I have such severe anxiety and depression I rarely leave the house, if my brother hadn’t offered I’d think I was doomed to live with my parents forever!
My daughter is 21 and has been diagnosed with EM from Mayo 3 years ago. She can’t work because she has flares in hands, feet, face and ears. I would love to know how to set her up with disability. Any advise or direction you could give would be great! We live in California.
Thanks,
Bonnie
- Make sure you have a doctor that will sign off on everything and agrees that you cannot work.
- Log on to the Social security website.
Fill out the application for disability.
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Make sure you have a description of EM to send in. As you know, most doctor’s have no clue what EM is.
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You will get several calls, maybe a letter, for information, just answer questions and send in what they need. They usually need medical records. Be prepared to explain EM to them.
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Wait 6 months.
The other way to apply is to go make an appointment at the Social Security office and apply in person.
Either way, have a description of EM ready.
I hope this helps. I was approved with my first application.
Lisa
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Hi Amo from Ireland,
I just want to say I feel the pain and loneliness you describe here in California <3 My onset happened when I was a full time grad student. I loved being a grad student, but had to reduce to part-time and finally down to 1 class / term. The pain + lack of sleep was too much and even that was a struggle.
What I wish I had done sooner – was apply for disability status within my university sooner. I don’t know if you have that option in Ireland. Professors then worked with me so that I could do work remotely, and when I did come to campus I didn’t have to walk too much, etc. Not all profs were nice about it, but it was worth it.
I also did most of my work / meetings in the morning, when I am most stable.
You talk about anxiety, i know anxiety can make my flares worse. I take propranolol and clonazepam as needed and they help a little with the anxiety component of flares.
I think what has probably been even better – is setting aside 5 min to meditate daily. Over time, I think my thoughts / feelings are less reactive, if that makes sense – there is more space so that I am less fused with anxiety/pain. Stan on here has recently wrote that “we are more than our thoughts” … I dunno that really struck a chord with me. In the past I’ve relied on logic + using thoughts to help “think” my way out of frantic feelings + low self esteem pits, but I think coming at it from both of these angles are worthwhile.
You mention interviews – I am currently not working but hope to test the waters later this year. So, I will be with you on the ride, albeit here in California If I am flaring too much in an interview, I’m giving myself permission to just excuse myself and end it. For me it’s just not worth it. I think knowing that in advance, will help feel like I’m more in control even if it doesn’t come up.
To be clear, I don’t think EM is psychogenic at all, but I do think the mind is a “free” tool we can use to help us define our experience.
Best wishes
Wat a fabulous message to get,I’ve started my meditations and am going to continue to do so,your just like the Californian version of me missus,but fair play to you trying to keep positive,sending you good vibes on your next job venture and you have your plan of action in place and all 
I just received a message on here from a guy who worked on this page and has invited me to join his United kingdom page which is only a cross the water from me so here’s hoping I find a doc to diagnose me properly so I can try and accept I have it,keep your chin up girl and keep fighting and if you do ever visit the green isle make sure to look me up x
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Thanks so much! We finished paperwork last night. We shall see what happens. I do so appreciate you sharing your wisdom!!
God Bless,
Bonnie
No problem! Let me know if I can help you again.
Lisa