I have a question…saw my doctor and we have confirmed at this point for sure this is what I am dealing with but going cautious on adding a major load of meds as I am already on lots. Anyway, I am going back to work soon, I am a teacher, and will be on my feet probably more than will be comfortable, so the question is has anyone found a fabulous pair of shoes that let the air breathe through - or a solution other than not walking and putting up your feet as I can’t do that until the end of the day. Thanks for any suggestions. 
I just bought some OluKai leather sandals with a wrap together velcro strap over the top. Now when my feet swell, I can change the size. They are comfortable and look nice. Very smooth sole for comfort on the hot as coals bottom of my feet. I haven’t worn socks for lots of years. Lots of good air circulation with a sandal. They are very light to wear. Kinda pricey, but my wife found them on the sale rack at a Playmakers Shoe Store. Hope this helps. Mike
I am a teacher too. I’ve been wearing flip flops to work in, but it is so painful when one of my little ones steps on my feet. If you find a pair of shoes that work well for you, please pass the info along. I’ll do the same. Also, do you have trouble with your hands swelling during the night and being stiff and sore in the morning? It is so hard for me to get my hands to work the way I need and want them to when I get to school. I find it frustrating, but keep at it until I have better movement. I wish I could soak my hands, but the pain from immersing them in water is too much. At times, I’ve had to resort to wearing rubber gloves when I shower. As of now, the only med I am taking is aspirin, mobic and plaquenil. I’m trying to avoid more than that. I wish you the best of luck as you return to school. I’m sure your students will be thrilled to have you back in the classroom. Stay upbeat and as positive as you can…and take care of you!! Sit as much as you can and let the kids come to you whenever possible.
I am basically wearing sandals now.....I have some now that are open weave all the way through and have a velcro closing (they look a little like a mary jane type) even then I have had to have my shoe pulled off at the end of the day due to the fact that I am so swollen into the shoe. Unfortunately for me I pretty much usually wake up with my hands not working and not working all day. I haven't found a good way for fixing it except for trying to use them the best I can - but also looking at ways I can make it through the day - magnets with the subjects and the kids make the schedule for me. I don't write much if I can. I have now a power wheelchair due to vertigo/balance issues so that has helped me enormously. For meds for me I am on aspirin (500mg x2 when I need it) and Lyrica (100mg at bedtime) So I trying that - we just increased the dosage on the Lyrica so we are waiting to see if it works before we add anything else. My kids know to stay away from my feet and at grade 3 they can do that pretty well. I hope you are doing okay as well. I am in the middle of some bad flares right now so things are not so great. Still working and smiling though :)
akf32 said:
I am a teacher too. I've been wearing flip flops to work in, but it is so painful when one of my little ones steps on my feet. If you find a pair of shoes that work well for you, please pass the info along. I'll do the same. Also, do you have trouble with your hands swelling during the night and being stiff and sore in the morning? It is so hard for me to get my hands to work the way I need and want them to when I get to school. I find it frustrating, but keep at it until I have better movement. I wish I could soak my hands, but the pain from immersing them in water is too much. At times, I've had to resort to wearing rubber gloves when I shower. As of now, the only med I am taking is aspirin, mobic and plaquenil. I'm trying to avoid more than that. I wish you the best of luck as you return to school. I'm sure your students will be thrilled to have you back in the classroom. Stay upbeat and as positive as you can...and take care of you!! Sit as much as you can and let the kids come to you whenever possible. :)
I also work in a school and to accommodate swelling I usually have various pairs of shoes in different styles and different sizes in a bag at school and have to change them regularly throughout the day. I do spend alot of time in sandals which means that my feet get stood on or run over by different vehicles the children ride in the outside area. I take low dose asprin daily to help thin my blood but not as a painkiller. I now have the problem of hemorraging at even the slightest bump and even wake up with bruises for no reason. More blood tests are on order so can find out if its asprin related or something else. I also take 1500 mg Gabapentin daily as well as nortriptyline. I have now had a worsening of symptoms so might have to review meds.
It is pretty amazing what we do as teachers just to get through the day I to look like I have been beat up with the bruises all over - I don’t know where they come from, some just appear out of nowhere others I have bumped into something. I will be checking in with my doctor again after thanksgiving but I can’t really take anything for pain as I am allergic to many things. Currently my Lyrica is at 100mg but I am sure we will be increasing things and I am most likely going to be asking him to see what else we can add to the list just to help make things easier as I really can’t handle the swelling constantly and the pain. I have acutally started taking when things are bad the pill they give you for when you have Edema (sorry I can’t remember the name) That seems to help but I only do that on the weekend as you do spend the weekend getting rid of extra fluid so the swelling goes down and sometimes so does the pain. Maybe between the three of us and anyone else who joins in can figure something out
I’m not too sure what lyrica is so will be looking it up, both the Gabapentin and nortriptyline are not pain killers as such but actually work by changing the signals your brain sends to the nerves thus relieving some of the nerve pain. I couldn’t have cope this long without it. It’s reassuring to hear that I’m not the only one who is bruising loads, my doctor didn’t think it was part of EM but the truth is he doesn’t know much about it. Apparently I am one of only 5 people suffering from EM in the whole of my county. Hopefully we can all get some REAL answers soon.
GREAT QUESTION! I am also a teacher (wonder if there is a body/stress connection there???) and I am also having the shoe dilemma!
I do have minor problems with hands, but not as bad as feet. I have also been recently diagnose with Aquagenic syringeal acrokeratoderma. Those with hand/water problems should look into this. Very rare...but I'm thinking it is connected & underdiagnosed.
Also wondering what ago everybody was when they first got symptoms and if any of you ever lived at Camp Lejune Marine base in the 1980s.
Thanks! Jackie=)
I assume that I bruise very easily due to the aspirin I am taking for the em. The aspirin thins your blood which therefore makes it easy to bruise. I am having a horrible time with blisters on my feet. I have only been able to wear flip flops and the blisters are on top of my toes beneath my toenails and beside my toenails so it doesn’t make any sense. Have any of you experienced issues with blisters? I even have a couple on my fingers. I teach Kindergarten so it is really hard not to be hands on with my students. But I really had to talk to them about my feet today because the pain of the em and the blisters and little feet stepping on my feet is almost more than I can handle. I’m to the point that I scream out when they step on me. It’s so frustrating and scary to have things going on with your body that you don’t understand. I hate all of you are having to deal with this too, but it is comforting knowing that there are people who understand how I feel.
I know that the bruising is from the aspirin I have been told that by my doctor but I mean just waking up in the morning and finding more bruises is getting frustrating. As far as the blisters the only thing I am able to do right now is something called - DuoDerm. It is basically a bandage but you get the extra thin set and they allow me to walk and it protects them as well. Also they keep it a little easier to walk as it is a layer and it seems to make things softer. Something to maybe look into. I know someone else recommended Bandaid Activ Flex as what they use.
It is very frustrating to be covered in bruises. I totally understand. And now I’m waking up covered with blisters too. I don’t understand what is causing them to form. Thanks for the blister advice. I will check into the DuoDerm.
I know that when I'm under stress I notice a worsening of symptoms Jackie but not sure if there is a connection. I'm from the uk and have been told that EM is extrememly rare here (or is it just that doctors don't know enough to diagnose corectly) My gp said there are only 5 other people in my county that have EM.
I first noticed symptoms in 2007 but wasn't diagnosed until 2008 and loads of hospital trips where I was tested for numerous other things.
I get lots of blisters too but its usually when my feet swell and I don't have chance to change shoes to bigger pair, I also only buy shoes that only cover the bare minimun. (Autumn is now here but reluctant to put away my sandals)
I'm new to this site and have been working my way round the discussions. They are competing my education as regards ME.
I get a lot of bruising - mainly due to steroid medications taken for many years. They thin the skin drastically and now that I am taking aspirin which thins the blood it's double trouble. It used to be just my forearms which aren't affected with EM but I've noticed the skin on the tops of my feet, which are, are changing in texture. Also the heels have started to crack which I have never experienced before in my life.
As to the blisters, I get them too and I think it may be due to the heat that is generated when experiencing a flare up of symptoms. Rather like a heat/sweat rash on a hot day. Do your blisters itch like the devil and when they go down leave a slightly thickened layer of skin that has to be peeled off revealing new smooth skin beneath?
I know there is always somebody worse of than oneself but, sometimes in the middle of a bad flare when all you want to do is get some relief, all charitable thoughts go right out the window and the 'why me' miseries start. Rant over!
Hi Tillyp, great you are learning from the posts - feel free to e-mail people or start your own discussion - I am finding this to be great site for information. Also the TEA site has some great articles. I understand the bruising when you are taking both the steroid medications and aspirins. I get the bruises for no reason - sometimes I know just because a kid has kicked me under the table. :) My feet have changed texture completely - either really soft or hard to the touch. As far as the blisters, the unknown of why they occur I have no idea, and yes I get itchy feet really bad and then I get a flare and blisters. My blisters I cover with a product called "Duoderm" and that causes them to just go down without peeling, so I can't answer that one.
As far as thinking that someone that is worse off than you - yes there always is - but that doesn't mean you don't get to complain or think "why me". I have spent time doing the all of the above and at work (thank goodness my secretary understands and hides me away so I can cry a little if needed and she listens. So don't worry.
Thanks! I know…it seems sometimes that I do that to much sometimes and then people look at me like all I do is complain so I am trying to limit - but I know if I do it here know one knows it (at least the people who say I do it to much) and no one judges. Thanks again!
John “JC” Colyer said:
You can rant or vent as much as you want here, know-one judges here
Just reading these last few posts about blisters ..... I too suffered with blisters which itched like the devil and drove me half mad when I had a flare .... The doctor gave me Clobetasol Propionate (Clobaderm) 0.05% W/W cream ... It was amazing ! .... As soon as I feel the familiar heat and itchy bump in between my toes/soles of my feet I put a thin layer of cream on and it vanishes within a couple of days .... Hope this helps xx
I've been enjoying a temporary reprieve from most of the symptoms for much of the summer - and I attribute that at least in part to pretty much living in sandals since spring.
But I confess that when my feet were flaring more, I'd get some OMG looks when people noticed my bright red sausage toes. Probably not something that you'd relish in the classroom.
I often wear socks with sandals (which, I know, is such a fashion no-no in the US). But if they don't contrast too much with the color of the sandals, few people notice.
And though it may seem counterintuitive, wool socks are the best for this! I'm a spinner & knitter, and have learned a great deal about the properties of wool - the best part of which is the way it wicks perspiration away from your skin & how well it breathes. Costco has some ladies wool dress socks - they are really thin, and feel great in sandals. They're stripey, but dark & neutral colored. The seams bother me a bit, but all in all it's a great combination.
I dread winter & having to protect my feet from Chicagoland's snow & sleet. I will wear the socks/sandals combination as long as I can.
And something I've discovered for temporary relief - rice socks! fill some big long cotton tube socks about half way with plain white rice (uncooked!) and tie the end in a knot. Don't fill them so much that they're hard like a stuffed sausage. Keep them in the freezer. I sleep with them draped across my toes - they release a gentle cooling that doesn't cause a rebound flare like water does.
If you have a planning period some time during the day, or get to eat at your desk, maybe you can grab the rice socks out of the fridge in the teacher's lounge & drape them over your feet under your desk.
Hope that helps,
Veronica
I wear natural fiber against my skin at all times .... Synthetic's are a definite no go ! .... I wear 100% cotton socks with no seams (you can get them off Ebay under Diabetic seam free 100%cotton socks) during the summer (when I can) and pure wool during the winter months, as I also have Raynauds and have to keep two toes from freezing ...... Crazy really as the rest of my foot is on FIRE !!! lol ..... I also have 100% Egyptian cotton sheets which are heavenly !! .... Good idea about the rice socks ! ..... I will definitely be trying this idea thanks for sharing ! .... Take care bye for now xx
I have been wearing these all summer and they have been brilliant, just dreading what to wear in the winter now.!