I am going to try to post the photos of my feet here for you all to see and comment on- do your feet look the same? Still trying to figure out if this is real EM or still not the right diagnosis. I tried to put the photo at the end but I don't know if this worked.
I can definitely say that at this point, I am more comfortable when I am in the office than at home. I have asked myself if I think just don't notice the pain as much at the office since I can occupy my mind but it is definitely true. Our office is cooler than home. Plus once I get there aside from going to the local coffee shop to pick up some tea, I am just in the office on our floor- back and forth only to the xerox machine and the ladies room.
Once i leave and walk to the bus stop, the feet become more active and then on the bus, especially if the bus has heat on then the toes start to go on fire. I am home here now writing this and my toes are bright red and not really swollen but they feel like they are exploding. The soles of my feet are also bright red and hot.
Does anyone else have a similar situation or are you always in pain? When I elevate my feet - that does not help to ease the pain and the redness does not abate. The only time they feel better at home is once I have fallen asleep (with medication to sleep), when I wake in the morning, they just feel stiff. I leave the feet uncovered because I can't have anything touch them- I can't wear socks. So they are uncovered all night so they are cool and "calmer" in the morning.
Oh Jordy you poor thing- bless you. They look very painful indeed. We cant give medical diagnosis on LWE but the 'exploding 'symptoms you describe do sound typical of EM. Known triggers are heat, fatigue, stress, weight bearing(ie: standing), and exertion. I know you will be seeing a Dr in the coming weeks so hopefully things will be confirmed either way for you. Do you find that the Gabapentin you were prescribed helps at all?
Re: hot red feet. There are several things you can try to minimise such as biofreeze gel, lidocaine gel, chillow pad, fan, and what i personally use- a cotton sheet soaked in cold water then wrung out and wrapped around 'hot' parts then focus a fan onto the area full blast. It retains coolness... try it. Maybe for the feet you could use a cotton pillowcase. Let me know if it helps ok ?
I know you probably have others in the household and you don't want to turn the heat down at home and make them less comfortable but maybe you can try a few degrees at a time allowing others to get acclimated to the cool and see if that helps your symptoms some. You can even ask just for a test for a couple of days and have everyone bundle up just to see if you fare better then discuss a more permanent cooling if it helps you enough. I know EM typically gets worse as the evening comes and if you are in a warmer place at that time it will just make it that much worse.
I am sure you don't want to burden your family but I am confident they wish they could do something to help you with your pain and if being a little cooler and having to dress a little warmer at home is all they have to do to help you feel a little better I would not be surprised if they are all for it!
This will also help you figure out a little more clearly if it truly is EM. If you feel better in a cooler house it probably is.
I am so happy you actually have a place you can go that feels better. I am so happy it is work that is such place. It sounds funny to those that can work but I wish so badly that I could work again. You are lucky to have a place of work that keeps it cool. I have found most but not all of the places I try to go outside my home are just too warm to be in. Do you know what temp it is at work? Maybe you can just set your home for that temp. I wouldn't think it was too cold as everyone else at work seems to be fine with it.
I wish I had some advice for your bus ride but other than bringing cool shoes/sandals and maybe a fan you can direct at your feet I don't have much better advice. Maybe sitting if you can wards the front if it is cooler outside so you can get a burst of cool air every time the driver opens the door?
As far as elevating not helping That doesn't preclude it from being EM. If it is too warm I flare elevated or not. Think of all of the nights trying to sleep. Our legs are elevated yet most of us still flare. My feet flare more when not elevated but just elevating them if I am still too warm doesn't make it go away. It helps more with the feeling as if they will explode not as much with the burning.
I hope some of this might help a little. You are so kind and I just want you to have a little reprieve at home. I am surprised you don't become a workaholic just wanting to stay in the cool office as much as you can!
Hi Jordy,
I too feel much better at work. I work in a law office, so unless I am attending an investigation or walking to court, I am usually sitting at my desk. I feel like Princess Fiona from Shrek. I look and feel mostly normal until nighttime and then things get ugly. I tend to flare around 700 or 800 pm after I get home and when I’m eating dinner or getting everyone ready for bed. If I get home late, I flare later. I am starting to notice redness and warmth in my hands earlier than before, though, sometimes as early as 400 in the afternoon. Although it’s primarily my hands that bother me, I’ve started waking up every night within an hour of falling asleep with hot feet. I’m worried it will get worse and interfere with my job. I’ve been noticing some slight burning in the soles of my feet during the day this week, but maybe I’m just hyprvigilant now…
My toes rarely get that red but it has happened. Mostly, when it comes to my feet, it's a red a bit on my toes, on my soles and halfway up the back of my heels. And the soles swell, mostly the top pads of my soles so if I'm walking around my toes are sort of pointing upwards -- but this occurs less often for me. Times like these shoes are impossible and so is any walking, really -- to the bathroom and back is my limit.
I find airconditioning in office blocks, hospitals etc are the most effective way to bring my EM symptoms down to levels that are not noticeable or barely noticeable. Next to that sort of airconditioning I find swimming to be nearly as effective. Airconditioning people have in homes help definitely, but not as effectively. I live with fans, open windows in winter and feet elevated when I'm at home -- which is unfortunately, most of the time. In summer I have an Italian portable airconditoning unit. A rather bulky thing I move to the lounge room in the day and my bedroom in the night. It definately helps with the EM but the cold air blowing on my face can trigger a migraine so I have to sleep with my back to it. Showering in only slightly warm water and then sitting in front of fan with my feet up is the most effective, hassle free way, I have for staying cool. Nights are a problem in winter when it's too cold to use my portable aircondtioner, because even with a fan and open windows bit of my body are way too hot, and in winter bit's of my body can be too hot and other bits too cold. Im like goldilocks only I can't find 'just right.'
That's actually , sort of, my descending order of effective pain relief. I can find it perfectly reasonable that you have no pain in the office if it's a bigger building with great airconditoning as it's certainly been my experience in the past.
And distraction does help me a lot of the time. Sometimes though I just can't seem to distract myself no matter what.
Hi Jordy. I have not been formally diagnosed yet either but my podiatrist and orthopaedic surgeon both think it is EM so I’m waiting to see a rheumatologist now. Treatment is free on NHS but you sometimes wait a long time to get it! The soles of my feet go bright red like your toes and keeping cool is the best treatment. Just taking off my shoes everywhere I go and putting my feet on a cool floor helps a lot, I still burn but it’s much milder. Elevation helps with the tight feeling, but only if my legs are at a 45 degree angle, so I lie flat on the bed with my feet on the headboard for about 20 mins. A footstool or chair with footrest doesn’t work for me, they have to be right up. When my feet are hot I can only stand or walk on them for a couple of minutes before the pain forces me to sit down, but when they are cool I can manage 10-15 mins befor they start up. Heat and pressure seem to be the main triggers so if you can work out ways to minimise these it will make life more bearable. I found the worst thing was not knowing what it was and I’ve had these symptoms for 2 years this month, but only recently been told it might be EM. Then I found this group and it’s wonderful being able to talk to others who really understand what it’s like to live with this horrible condition.