EM is ruining my life?!

I got diagnosed a year ago with EM on my hands, and it’s ruining my life right now because of the stress and anxiety I get from the embarassment of my hands being bright red. I am in my 2nd year of college and I work in a customer service job using my hands with computers etc. It’s negatively impacting my social interactions and I have missed classes because of the social anxiety it causes to the point I can’t focus on the lesson only on the fear of others looking at my hands. Or when I went to my friends birthday dinner my hands were under the table and I couldnt even hold a menu. I am afraid to bring attention to myself in social situations for fear of bringing attention to my hands. I have a topical I use from the Mayo clinic that works for a few minutes for flare ups but I can’t put that on every minute but it’s not reliable. Does anyone with raynauds or EM ever had to deal with this or have any advice? This makes me depressed and miserable I will take any sugestions! Thank you!

Hi Josh12

I am new to this group and it’s my daughter who suffers from EM but I know that stress and anxiety can actually exacerbate flare ups. My daughter is seeing a Clinical Psychologist to help deal with the anxiety, just wondered if you had tried to go down this route yet? Might be worth a go.

I have been thinking about talking to someone like a psychologist or psychiatrist for a while and was given a list of possible people to talk to from my rheumatologist. Does your daughter take anxiety med?

Hi Josh, my EM was caused by a B12 deficiency due to pernicious anemia. Have you had yours tested? Doctors don’t usually think to check it. It needs to be in the upper half of the range, at least 500 pg/mL or you could be deficient. For some reason, the low cutoff used by traditional doctors is far too low, there are many incidences of people having neurological symptoms when their B12 is in the normal range, yet treatment alleviates their symptoms.

My heart goes out to you. EM is a lousy disease in so many ways. I am grateful for your sharing your struggle. Flares are a daily part life for many EM people. EM flares became my daily companion 5 years ago. My core team of professional help includes an internist, psychologist, dermatologist and personal (exercise) trainer.
My trials with medications was not succesful. I did courses of Elavil, Cymbalta, Neurontin, Lyrica, Aspirin & others. Maybe some impact on flares but side effects outweighed benefits. I too used topical ointments (a ketamine combo). Only a small & brief improvement. Currently I take no meds. Nutrition has been a focus for me: vegetarian, gluten free, minimal processed foods, vitamins (general multivit, B complex, C & D. Daily exercise.
One tough but true path for contending w/this disease is lifestyle modification. What works for each of us varies. Listen to your body. I’m for progress not perfection. Gather up your supports.
With hope & faith,
Elis CES

Hi Josh12, I agree that it would be a good idea to see a psychologist. I don’t know about how it works in the US, but here in Canada Universities have free counselling services which can be very helpful. It’s good that you have recognized your anxiety.
On an additional note, if ever you get prescribed medication, remember to mention that you have Erythromelalgia to your care provider. I have Adhd as well and the medication can mess with my symptoms.

Hi Josh, My daughter is on lots of medication but not for anxiety. She is only 7 years old so probably due to her age.

Genetic testing of NAV 1.7 sodium channel defects could be in order for someone who is young and experiencing EM. Also if it’s a primary EM disorder from disease Mexiletine (Oral Lidocaine) may be something that can help. But it has to be given in cardiac doses to be effective for primary EM. Tests with sub-cadiac doses, used for other neurological issues, doesn’t seem to help people with primary EM. And of course as Mexiletine can affect the heart rythm, it’s something that has to be carefully done under a doctors care and perhaps requiring a hospital stay while the dose is tested and adjusted.

This of course is for those who have “primary EM” from a genetic defect.

Just some thoughts. Now my mom has EM but she has it as an old lady and didn’t get it in it’s full blown state leaving her permanently disabled until she was 64. She got it from a drug reaction to a pill called Risperdol. She had mild EM symptoms earlier from a drug that was also a nerve pill drug. In her case she is an old lady and she is on so many medications that she would have to be weaned off them and in a hospital to try the Mexiletine treatments. Due to the heart risks it’s not recommended by her MD’s and we haven’t even gone down the path of seriously discussing this as a possible treatment test. The doctors have basically told her that wasn’t a good optional treatment for my mom.

For someone who is young that has the disease, if they have EM, it’s probably a good idea to get the genetic test to see if it’s related to that genetic defect. Females seem to get EM more than males and in the “genetic version” it’s passed through the females genetic DNA to their children, not through the males.

Thanks Watchman.Our daughter is already on mexiletine and we have all had
the genetic test, our daughters was positive and mine and my partner’s was
negative so not passed on.

However interestingly not only was our daughter’s test positive but the
gene change she has is very, very rare, there is only one other person in
the whole world that the doctor’s know about who also has the exact same
genetic mutation. Unfortunately due to patient confidentiality we only know
that this girl lives in America and is now 13 years old, we would so love
to be able to talk to this family but don’t even know where to start!

Mexiletine it is the only drug that our daughter has tried(we have a long
list!) that has proved slightly effective but we are still a long way from
where we want to be, as I am sure many people in this support group are.
All we can do is hopex

What medications is she on? Do they help?

I can relate totally and what I tell myself is that is completely normal to feel that way. Why wouldn’t we have anxiety or be disturbed by the appearance and what we go through? Anyone would.

This week I have been concerned about Christmas parties. I have three that I am invited to and they are all at night. The EM as you know gets worse in the afternoon and all night. Can’t they have in the morning??? haha joking

So I am faced with this. First, How can I attend when I know that I am going to have flares as I do daily. What will I wear? It is cold here where I live in the winter. So, everyone want to be toasty in the winter and Christmas time, you know sit by the fire, roasting walnuts, so you know that the fire will going and everyone will want to be cozy warm, except the EM. I too would love to be cozy warm ! I also have Raynauds. So it backfires with it being cold.

So what will I wear? My short sleeve and what on the legs? jeans? Those will need to come off by that time.

What will I do ? Be the only person with shoes off and barefoot …when there is snow on the ground? In front of people? Some of which I don’t know? I must add if there wasa contest for the ugliest feet…I’d probably win ! Not something I like to show off. Let alone make my feet the center of attention? Hopefuly no one is eating !!!

Then the anxiety is there. Will people start asking me questions? Will they stare? I will feel like a freak ! I don’t want sympathy.

So when I think about all this…the reality is there is no cure…some go into a sort of remission maybe…while others just continue on the road of severity. There is no rule. There is no discrimination. There is no medication. There is no help.

So with that being said I think I am faced with a decision. I think we all are. Anyone who has a chronic illness of any type.

I can either stay trapped in my house as I am now trapped all summer long. I am actually still trapped in the winter too but less.

So I can either stay trapped, isolated, …for what seems that will probably be the rest of my life.
Or I can put aside anxiety, feeling bad for myself, having a pity party, worrying about what people will say, how will take shoes off, what will I wear, I will look ridiculos with packs in my hands and under my feet…and attend.

Live life to its fullest as best as you can. Don’t care what people say. Or think. If they ask me questions, I can give them education on a disease that no one is aware of. Maybe that will help someone they know that can’t fint the answer. They see me with ice packs under my hands and feet. Ok. It’s not a urine bag or fecus showing.
Yup my feet are ugly. Oh well. Not everything about me is ugly.

So I have a decision. Get out there no matter how you look and feel and bring your icepacks and if you have to be in shorts and short sleeve and barefoot in the winter at a function…then so be it.

I can live. Or I can die before I did.

It’s not how I saw my life. It’s not how any of you saw your life. I’m not the only one. I can dress, drive, do my chores, have conversations, eat and get myself ready. Other’s cannot and with other diseases cannot. I try to remind myself of this. It could always be worse. It could always be better.

I haven’t made my decision yet. I’m just sharing my thoughts and I’m sure you all feel the same way. It’s hard to go out and try to be normal but who is normal?

I hope my decision as well as all of yours is…that we go out in public. We try to live out lives as normal as we can bringing and doing what we must do to attend a social party or work or go out shopping or whatever you need to do. We deserve some laughs. I hope we don’t care how we look. I hope we find peace and realize it’s not about what we look like. It’s who we are inside and how we handle ourselves in front of others. I would like to think I can choose this way but I won’t lie. It’s hard. But I hope I chose it. I hope you chose it. Because if not, EM wins and we don’t live our life and we miss out on things that we shouldn’t. If we can only look past our disabilities and look at what we have to offer as a person. That’s what matters.

Just think if we all lived in the same area, we could all meet and have laughs and not second guess what we look like or others will stare. But we don’t. So if you are lucky to have a job still, and lucky to have family and friends, don’t let EM take that from you. It took enough already.

Now if I can re-read this all the way up to my first Christmas party ! :slight_smile: I might make the decision to go. That would be the right decision.

May you all find peace in your day !

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Rayofhope thank you for posting that. It really helps to here other peoples stories because sometimes I feel alone with this. I think I have raynauds to because my hands always get COLD and RED. I went to a massage therapy session a while ago and she was alarmed when she saw my hands. Very uncomfortable. I went on some raynauds forums and have made a decision to wear gloves whenever I am out. It’s not so bad on the feet (the Mayo Clinic said I had a little of it there) but mostly just the hands. I actually prefer the heat over the cold for some reason because if it’s hot inside, I have an AC. I prefer warm climates but out here in CO it’s going to be getting freezing. In class, I get embarrassed to do a class presentation, write something on the board or even typing on computers. About a week or 2 ago I kept reading all I could and it snapped in my mind to give wearing gloves a try. The way I see it at this point is I would rather deal with comments about wearing gloves on my hands and to be able to go about my day then to not wear gloves, hide my hands and have limited activities. I read on the forum there were parents having their child wearing gloves, adults wearing them to. Same with carpal tunnel all these conditions there is people wearing gloves. They give me strength as if I don’t have EM and best of all people can see the gloves and maybe think something weird about me but not have to see the redness. This has ruined me the past few semesters of college but what I have done is to try tackling each issue by baby steps. One was at work when I used to hide my hands, but I have started to just pretend someone isn’t there and keep working. Who knew something as simple as a pair of gloves could bring such an impact. I pray you and others find something to help even if it’s not a medication. I tried topical creams and have given up. Another thing I am going to be doing soon is talk to my doctor about trying an anxiety medication. I can’t focus on anything, I am talking BASIC social interactions because I always feel their looking at my hands. SO my solution I am trying out now I offer up to anyone else is to wear gloves and try finding an anxiety medication or training your brain to loosen up. I have tried to force my brain to stop for so long and it’s not helping. All my family knows I have EM, but even with my CLOSE family my brain still stresses my family is looking at my hands. I tried so hard and this was the first Thanksgiving Dinner I had where I felt somewhat relaxed and didn’t think about my hands the entire time.

I can totally relate. I think we all can. I live in MA and the winters are brutal. With Raynauds I wear gloves, winter jacket, closed shoe with sock. However, this summer things progressed and so now this winter I’m finding I have to wear all that and then when I’m in the car I am peeling it off… I have to turn heat off then on repeat repeat repeat. I also notice that now there is cramping in the hands and feet. I believe but I’m not sure that it’s due yo having Raynauds and em. So when my hands hot red and I go on the cold… It almost will immediately contract. Fingers will sink way down. Toes. It’s never all four at once…

So that would be the only time I could put gloves on otherwise it definitely would cause a flare.

I almost want to wear a shirt… EM SURVIVOR then a brief explanation on my back. I think at this point it’s about awareness. I think if we can all put our focus on awareness there is a lot more people out there with em they just don’t know it. When more people come forward, this will no longer be a rare disease and they will research more. I believe this. If it’s not going to happen in my life, I would like to do what I can to try to help the next generation. Our children.

Hi Josh

Sorry for not replying to your message but our daughter has been in hospital for a long time after suffering a serious infection, she is still in hospital but on the mend now! Our daughter is on Gabapentin, Cetirizine, Chlorphenamine, Naproxen, Clonidine, Mexitil-Brand and Amitriptyline. It is so hard to tell what helps at times but I’m sure they all do at some level. The three I think really do help are Mexilitine, Gabapentin and Cetirizine. Also we have been advised not to use ice packs and fans as they damage skin, cause re-bound flaring and make symptoms worse. Elevating feet is also helpful but our daughter took a long time to do this as it appeared to cause her more pain and she was more comfortable legs dangling, for some reason? She is starting to see the benefits now though from our recent admission to hospital as they have worked hard to get her to keep her legs up. It is a fine balancing act that we are still learning!

There is no reason why she shouldn’t use ice packs so long as they are wrapped in a towel or something like that and not for too long at a time. Fans do dry your skin like the wind if you go out in the sun on a windy day you burn much more easily.

So sorry she has to deal with that. Your family is in my prayers :slight_smile:

I’m right there with you, lol. Only my EM is mostly on my face and ears. I have to think about all those things before I go anywhere also. It sucks! I’m in Arizona, so summers here are unbearable, I’m like a bat in a cave. My EM happens in the morning and night, but I get flare ups at random times too. I’d love to find a group of sufferers here in AZ.

Hi Sheltie

We did used to use ice packs, always wrapped in a tea towel and even after
reducing our daughter’s reliance on them she still got a cold thermal
injury on her foot. Not good! After not using them even though tough at
the time, there has been a big improvement. Ice packs, although at the
time to the sufferer, feel like they help; they are actually making
symptoms worse in the long run. We are not using a fan at the moment but
then it’s not summer and it will always be more tricky to manage symptoms
in the summer months. We will have to see how it goes, we will let you
know if any success.

Thanks Josh, it’s been tough but then I think everyone on this website has
an important story to tell. I am just so glad there is a support group, I
wish I had joined as soon as our daughter was diagnosed but it rocked our
world at the time!

Hi Hotfeet

I wonder if a tea towel wasn’t thick enough. I used to use a hand towel and folded it over so it was twice as thick. It didn’t do my skin any harm at all and I used them for a long time, maybe that’s the reason. Yes not bad in winter.