Frustrated: EM at university completely crushed confidence in appearance

General
#1

For some time I have been feeling absolutely crushed an devestted about what EM has taken from me at university, and my adolescent life in general (I have just finished my masters degree).

Throughout my teenage years and the first three years of university, I avoided people. This wasn’t just due to EM. I had a bit of a troubled time personally as well. But I know that my EM has made it so hard for me to feel confident in spending time with people. My hands are always discoloured, and flare daily when it isn’t summer (active heating makes it better). When I hang them down by my side, they are always bright red, irrespective of the time of year.

I have learned to keep my hands folded, or to play with my necklace or something of the sort to keep them elevated, but eventually it just gets awkward. I feel like the behaviours I have adopted to keep my hands hidden or looking reasonable have fed back to lower my confidence, while I was always a very socialble and outgoing kid.

One thing that (paradoxically) has upset me very much in the last year or so is being told that fairly attractive? I had never thought much about my physical appearance before, preferring to hide. But I had made a conscious effort to try to be more sociable to help with my low mood. I finally started to ‘open up’ a bit and spend more time with people, and with that came a considerable amount of male attention- at least, before they saw my hands. And it just makes me so sad. Because I really started feeling something for someone, but a combination of my lack of confidence and unsightly flare ups made whatever was there gradually dissolve. And it was very painful. I so wish I had been able to have a normal adolescence, doing crazy things and learning about myself and relationships. But instead I have sheltered myself, not exposing my hands or lower legs if I can help it. And it so confuses me, with the way I have to behave with other people. Often, when I go out I get complemented on my looks and approached by men if I am wearing gloves. There is such a wierd incongruence between the EM look and the rest of me, and I no longer know how to think or behave with it.

As a child, I was always so open and sociable and likeable. The direct effects of EM, as well as secondary effects in confidence and safeguarding habits I have built, have so affected my ability to have social interactions and feel comfortable with a partner (and find one).

I know that many people will be inclined to say ‘the people who matter won’t care about your EM’, and ‘you will find someone who will love you just as you are’, but somehow that gives me absolutely no reassurance whatsoever. I think some young sufferers will understand what I mean- I know in the long run it doesn’t matter, and I will eventually forget having ever wanted to have a more ‘normal’ adolescence relationship-wise, but there is a certain value to the experience… I know also that this is such a trivial matter and I should be greatful for the fact that my EM isn’t crippling me yet, as it does to so many people and it may well do in the future. But I guess it hurts when you are in the midst of emotional relationship-turmoil.

Sorry for the long post :confused: But it would make me feel better to know that I am not alone. Is there anyone else who is young and/or attractive, and has felt the pain of EM taking away a normal youthful social life, or some weird clash between their ‘natural’ appearance and EM appearance, or maybe lost a partner/love interest who you really started to care about?

#2

God bless you. It’s so hard at 70. It must be devastating when you’re young

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#3

I feel you! I’m 25 and I’ve been struggling with EM since I was a small child, but it has been much worse in recent years. I have EM in my feet, hands, ears and legs. I started a new job a few years ago and I was having similar problems. Constantly trying to hide my flare ups, and casually trying to put my hands on cold objects in the room or rushing off to the bathroom to run my hands under cold water. I struggled with social anxiety but the last year or so I’ve stopped caring so much and I ended up actually explaining my condition to everyone at my work, all my friends and my boyfriend. It honestly made it so much easier and really helped my anxiety about it. Of course at first everyone asked me a bunch of questions because it is such a rare condition and not many people understand it, but it was worth it!

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#4

People really do pick up on the anxiety that you internalize. And if they don’t understand then they may just shy away. It can be hard opening up about something like EM to friends or colleagues, and you don’t have to give a long lecture about it, but a brief " it’s a medical condition that can be painful. It is exacerbated by _____ (whatever your triggers are)" is more than enough. It helps if you can show that you are not ashamed of it anymore than you would be ashamed to have a sore throat. It just is.

I (a guy) didn’t start having serious problems with EM until my late 30s. But prior to that I still had my physical quirks. I have a large patch of discolored skin on my forearm. Might be vitiligo. Not sure. But we all have physical quirks in one way or another. Once I accepted that then I found that most people really 1)didn’t notice and/or 2)didn’t care.

Maybe some people will be freaked out by seeing my red feet. SO WHAT! I just don’t care.

And when I stopped caring so much about things that made me self conscious I felt much more comfortable in social situations. I found things I enjoyed doing and people who enjoyed doing those things with me. And I’ve kept on just living life. Now it’s just life with EM too.

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#5

I can identify with the sense of loss. When I developed EM I had a perfect body: muscular, always in the gym, no body fat. When I lost that it was emotionally devastating. I think in some ways that was more torturous than the EM itself. It ruined my self-confidence. I kept myself in a self-imposed exile for a long time. I lost out on a lot of relationship opportunities because of it. The only thing that has brought back my self-confidence is that my body returned, at long last.

So, others will say just live with it, be confident, don’t care what others think, etc. That’s easier said than done. For me, my path back had to start with finding a pharmaceutical that would stop the constant flaring. Which I did.

I look at the treatment options you’ve tried and don’t see anything that has proven to work in any other cases I’ve read about. Why not turn over every stone, try every treatment option discussed in medical journals, before cosigning that this must be your fate?

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#6

I completely agree with Carter. Obviously acceptance plays a role with any chronic illness. However, I would definitely be proactive in finding treatment, especially if it is having such a large impact on your life. I am young too, 23, however, I did not begin to develop EM until I was about 21. Before that I was a high level athlete and super active, EM has began to take that away over time. I still swim and do a lot of walking, but at the moment running and the gym is off the cards (I flare hands, feet and face, has progressively been getting worse). I am working with a dermatologist now, I am lucky she is very knowledgeable, but we are just using the guidelines set out by the Primary Care Dermatology Society http://www.pcds.org.uk/clinical-guidance/erythromelalgia . We plan on trying every single treatment on this list in the hope of something which provides relief (general magnesium helps me a bit). I would recommend you do the same. Look you may not find something which “cures” you, but something on that list may provide you with substantial relief, it is worth a try. Best of luck!

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#7

Dear Mitmit,
Congrats on your Master’s degree! You worked hard and should be so proud!
Please hang in there honey. I am a female, 67 years old. I developed Raynaud’s Disease when I was in college. My boyfriend noticed my fingertips were blue, even under the nails.
He told my mother! I was 19 working and going to college full time. My day was chock-full and I didn’t need to be bothered. MY hands were cold all the time. My toes would get what I thought was frost bite if I was standing outside on a winter day for longer than 5 minutes.
My mom took me to a cardiologist first, I was fine he said. Then she took me to a hematologist. The doctor asked me many questions after putting my mom out in the waiting room. Questions like, do you smoke? Are you on the pill? Good questions as they could cause my symptoms. But the answer to these questions was no.
He took my blood and told us that they were specialized tests and it would take a while to get the results back as he was sending the bloodwork to California. We are in NY. The only lab in the country that would perform these tests.
After 3 weeks we went back for the results. All tests were normal. His dx was Raynaud’s phenomenon. Told me I may have an underlying condition that hasn’t shown up yet and Raynaud’s can be a symptom of it.
That was around spring of '73.
Fast forward to age of 21 - I started falling down to the floor upon arising from bed in the morning. No dizziness or numbness, I just short circuited and was able to get up, no problem. Not every day but occasionally. I didn’t tell anyone. Later told my mom and I said to her I didn’t have time for doctors. I finished college the next year and got engaged to my boyfriend of 6 yrs. I felt okay and was careful with the Raynaud’s even though my car didn’t have heat, I didn’t have the money to repair it. I put all my salary away every week for tuition, less gas money for the car, etc.
FF Got my first teaching position and kept my job at night as a bookkeeper for a supermarket. Got married in 1977 and had a baby the end of 1978. No falling, so I thought it was all fine.
After having the baby I fell a few times again upon arising. Again it went away.
My husband became very ill in 1980 and diagnosed with Crohn’s.
He was at death’s door. But fought to get well and after realizing he needed a new doctor we finally had all his meds updated to better pharmaceuticals and he went into remission and felt wonderful. I went back to teaching.
We decided to have another child. My son was turning 7 and our second child, a girl was born when he was close to 8 yrs old. (I felt pretty well)
When my daughter was in Kindergarten in 1992 I lost my vision suddenly in the left eye. After much ado I was diagnosed with possible Lupus and another doctor told me he thought MS.
After an MRI 6 months after the vision loss (optic neuritis) the MRI results revealed I had MS.
the neurologist said some people get both Lupus & MS together. My tests for Lupus were borderline. I still have some symptoms of Lupus but not too badly.
About 4 years ago I started getting EM symptoms. For many years before my EM was dxed I suffered from red and painful ears especially after sleeping on my right side. My ear would be red/purple and painful in the mornings. I was dxed with Relapsing Polychondritis as my rib cage always hurt too, (still does but that’s another story, may be the MS may be from degenerative disc disease, sorry forgot to mention that). I believe now that Relapsing Polychondritis was a misdiagnosis. I think it’s the EM. I dealing with it all. I was taking a full aspirin and I also take 900mgs of gabapentin daily. I was on the gabapentin for the MS so my doctor upped the dose from 600mgs to 900mgs. It helps a bit.
So I deal with MS, possible Lupus, Arthritis of the spine, Raynaud’s and EM of the feet, hands and ears, and getting into my senior years. I am still mobile thank God. Not without pain but I prioritize what is most important for the day. I spend whatever energy I have on any given day, very carefully.
If I overdo it, I suffer more. But I am not ready in my own mind to become dependent on getting help. My husband helps me sometimes.
You can do this Mitmit. I have become accustomed to the pain and realize many people live with worse than the symptoms I have.
I came to this site because my doctor told me to find a support group online. He said it’s a rare condition and online was the best way to go.
I am so sorry you have to deal with this terrible condition. Try to hang in, distract yourself as best you can. I understand about life’s emotional upsets. I have had them too, we all do. It does make dealing with illness so much more difficult. Sorry this is long. I wanted to show you that I made it this far and still find the beauty of life.
(Yes you will find your soul mate. Don’t forget a man can get sick too. Would you discriminate if you loved someone? No you would help him because you love him.)
Don’t forget you’re not alone. God bless you with better heath.

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#8

Thanks for your reply brookehd! I guess the job you have can make a difference- if you are working with a small-ish group of people then they can all get to know the EM and the person behind. I’m persuing a career in research and lecturing, and whenever I think about the future I wonder if I will be lecturing in gloves, just to hide the color change from the brief time I hald my hand down by my side or a potential flare :confused:

#9

Thanks for the support Iggy. I’m sure I’ll get over the embarassment at some point, even if just ebcause I become tired of hiding haha :slight_smile:

#10

Thanks Carter. I completely identify with what you said. I’ve been regularly working out since I was 10 (and am now 23) and it is a big part of my life; being toned and athletic has become a part of my identity too. I can imagine it must have been so so tough to have lost that and I’m so glad you got back the body you worked hard for. There are many times in my life that I have felt I have lost a piece of me, and each time it is devastating so I understand how hard it must have been. I guess I’m quite grateful that my EM is helped by exercise, as long as I keep my peripheries warm enough if the weather isn’t good.

I have started seeing Drs about the EM (finally) and maybe will be prescribed something soon. But I worry that it might exacerbate things in the long run, or have other nasty side effects. I have seen people being prescirbed antidepressants for the EM (and not the depression it caused) which to me is shocking. I was on Sertraline and olanzapine for almost a year, and it completely destroyed me. I became a completely different person and mourned the loss of who had been. There are also drugs that block ion channels. But no one can know how specific they are. If they affect the ion channels that help muscles to work, perhaps I will lose muscle tone. If they cn pass through the blood-brain barries, perhaps they will affect the neuronal ion channels and alter my thinking. It just all feels very wooly and experiemntal. Doctors say you should try something for a few weeks/months to see if it helps but by that time permanent damage might be done :confused:

#11

While there is some level of experimentation involved, it’s important to remember you would not be taking experimental drugs. The drugs you would try have cleared rigorous safety testing and, in most instances, been in use for decades. They will not cause muscle wasting or psychosis. It is much more likely you risk permanent damage by letting your EM progress unimpeded. Take action now before the EM causes irreparable harm beyond lost relationship opportunities.

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#12

mitmit, I completely relate with your story (gloves, awkwardness, hands-up tactics etc.) even though my pb wasn’t EM in the first place but something mimicking it. So, I know that I’m in an understandably “drug-prone” environment here but my own flares (hands) due to repeated minoxidil topical overdosing seven-eight years ago (and which are still very slowly decreasing to this day long after stopping tis medication) are made significantly less annoying by taking (daily) some hyaluronic acid/sea collagen oral supplement. This thing improves the appearance of skin and makes a difference with my flares by God knows what mechanism. Maybe you can give it a try and play with the dosages. At least, it’s harmless.

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#13

To comment a bit… my undergrad degree is in genetics and I took a LOT of molecular biology and related coursework. I even did work on chloride ion channel expression in cystic fibrosis so ion channels are familiar.

Mexiletine acts on the sodium ion channel produced by the SCN9A gene. This specific ion channel is a protein which is technically know as Nav1.7.

The Nav1.7 protein is expressed in small nerve fibers which are involved in pain, sensation, and other autonomic activities of the autonomic nervous system. Autonomic nerves control things you have no conscious control over like muscular movements of your intestines to digest food, your sweat response, or response of the pupil of the eye to changing light among other things.

Importantly Nav1.7 is not a part of the large fiber nerves that are a part of the nerves that control voluntary muscle movement. So EM drugs that act on the sodium ion channel should have no effect on muscle tone by themselves.

But you may find you need to adapt your workout to maintain fitness. Exercise generally creates increased blood flow with corresponding blood vessel dilation which can be painful for EM patients. The blood vessel dilation acts both to meet increased oxygen demands and to cool the body. Swimming or other in water activities can help to cool the body and reduce blood vessel dilation thus limiting EM pain. Other activities like open road bike riding might be more tolerable by allowing you to stay cooler. See what works for you.

As to Central Nervous System action of mexiletine, yes it can penetrate the blood brain barrier. One study found that mexiletine may offer protection from damage that nerves can suffer due to lack of oxygen such as might occur in a stroke. A further study of diabetic patients indicated that mexiletine may affect body weight regulation by helping to reduce visceral body fat helping patients lose weight and improve their uric acid, triglycerides, and blood glucose and measured by lower HbA1C levels.

I am not saying that mexiletine is totally harmless. You and your doctor must make the decision if it is right for you and you should be closely monitored to determine how your react to the drug and if it improves your symptoms.

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#14

Thanks Anthony! (and sorry for the late reply…its been a busy week). I mentioned before in another post that I had an appointment for a rheumatologist in October, and promised to give an update on how it wen/t Unfortunately, due to covid the appointment took place on the phone. I was just asked to come in for blood tests and will probably be prescribed nifedipine for the raynauds, but they want to wait for the blood test results before I start taking it. I’ll give an update after I take the medication for some time. Apparently with nifedipine you can be oscillating with flushing for a week or so before things calm down. Am worried abou the side effects (low blood pressure=dizziness=difficulty with working out/running/studying) but I will give it a go once I get the prescription. It’s better that then lose fingers to the mild British winter!

#15

Hi Ann! Sorry for the late reply- it’s been such a busy week! But thank you so much for sharing your story. I’m glad to see that you found medication that helped, and you seem to have had a very full on life so far! Definitely difficult at times, but the tough patches seemed to have gotten better :slight_smile: I’ll try to be more tenacious with seeing specialist medical help and trying medication, and will stay posiive :slight_smile:

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#16

Hi Iggy! Thank you so much for your input! I always appreciate learning some of the science behind medication action. I struggle to be entirely convinced because there may be many ion channels that have a similar enough outer configuration to SCN9A that mexiletine can bind weakly. After all, biology is stochastic and kinetic, and drug interactions with bio molecules are rarely a ‘yes’ or ‘no’. I will look into genes related to SCN9A. Perhaps there are some well-known, closely related ion channels that might be weakly affected.

I hope I don;t sound paranoid saying all of this, because I am not! I just had a very bad experience with medications in the past, with doctors claiming that effects X,Y,Z could not have possibly been from the drug, but I saw no other plauible explanation. It is impossible to know all of the interactions of a drug, and although doctors claim to be aware of this they still dismiss patints being concerned about unexpected side effects.

Thinking on it a little more htough it seems quite favourable (in an evolutionary/ survival sense) for the autonomic and other systems to have somewhat distinct biochemical fingerprints.

The other uses of mexiletine are really interesting (though of course most studies seem to focus on positive uses :/). The protection against lack of oxygen would definitely be useful for my peripheral nerves when the raynauds gets bad! And I actually have chronically low blood sugar levels. So it would be interting to see how it would affect me on that front.

Thank you so much for your post! Reading science always makes me feel more at ease.

#17

I have exactly the same. ER 6 years. MS 38 years. Positivity and thankfulness helps. My faith in Jesus is invaluable to me.

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