Hi all.
Just wanting to check whether anyone else has experienced burning pain in their eye, like you’ve spread anti flam cream across your face.
It happened for the second time today, and lasted a hour or so. My face was flaring at the time, and it seems to have spread up.
My eye didn’t go red or swollen that I could see.
My EM is pretty mild, uncomfortable, but not debilitating, and I’m mildly afraid that it has started accelerating.
ALSO!
I am going to Italy later in the year (go me) and will be going from late winter in New Zealand, 10-18 degrees c, to late summer in Italy, 20-30 degrees c.
We are doing a walking holiday, so will be covering 150km in 3 weeks.
Does anyone have any good tips for dealing with evenings sitting, walking in the sun, and the sudden change in climate.
Like I said, I’m usually pretty mild, so I’m fairly confident that I will be ok, just wanting some tips.
My eyes get hot. They also get dry. I experience it when my face is flaring. They have gone red in the past - the 'whites' colored reddish but I haven't experienced that for a while.
Good on you for going to Italy on a walking tour. I can't offer you any advice but hopefully someone else can. 'Go You' :)
I have had intermittent problems with red burning eyes. Sometimes they burn so bad I have to keep them closed with a cooling mask on. I saw an ophthalmologist and all he could think is it was dry eyes but I beg to differ. I am confident it is EM in my eyes and that is just something he couldn't understand because he has never even heard of it. I say this because it only happens when my face is flaring. It gets worse in warmth and better when cool.
I am sorry but I don't have any good suggestions for your trip. I wouldn't know how to even dream about a walking tour!
I am so happy you are able to do it! I guess I would say just rest when you need to someplace cool and don't feel pressured to keep up.
It just occurred to me that perhaps you should take an umbrella. I use one when I have to go out in the sun because I feel like I'm burning after a minute or so in direct hot sun. Plus I can't use sunblock - allergies and also for the reason that rubbing on cream will often cause my skin to flare.
My eyes have looked like yours. Not lately, touch wood. And it does happen when my face flares, but red eyes only accompany a bad flare and only sometimes.
I have had intermittent problems with red burning eyes. Sometimes they burn so bad I have to keep them closed with a cooling mask on. I saw an ophthalmologist and all he could think is it was dry eyes but I beg to differ. I am confident it is EM in my eyes and that is just something he couldn't understand because he has never even heard of it. I say this because it only happens when my face is flaring. It gets worse in warmth and better when cool.
I am sorry but I don't have any good suggestions for your trip. I wouldn't know how to even dream about a walking tour!
I am so happy you are able to do it! I guess I would say just rest when you need to someplace cool and don't feel pressured to keep up.
Wow. Thanks so much. Both of you get it when your face flares, which is what mine did.
Just another symptom to chart and record.
Thanks for the suggestion of an umbrella, I might just do that. It’s very exciting but apprehensive.
My partners family has a yearly midwinter swim, and cheese fondue every year, and last year I could sit by the fire no probs (I love sitting by a fire) but this year I had to select the seat farthest away, because my face and ears couldn’t handle it. Shows me this is definately getting worse.
The pictures I posted were from a couple of months ago and it hasn't been happening recently. Wouldn't you know it . It started again today!!! My face has been flaring more lately so I shouldn't be surprised. I will add my photo from today to my library on my page if you want to check it out. If you look close you can see how the burning is on my cheeks and nose and all the way up above my eyes . It would make sense that it wouldn't just skip my eyes I guess.
And OUCH. It looks like your face is a bit swollen too. I get the swelling on my face too. Also redness above my eyes/on my forehead.
I couldn't count the number of times I've noted out loud that something to do with EM or POTS hasn't happened for a while only to see it manifest not long afterwards.
I hope the eye burning redness resolves very soon for you.
I’m experimenting today. My feet haven’t flared for a few days, but I have been wearing sandals and its winter. So I’m wearing boots today to see if it flares or if the gabapentin is actually starting to work
Thank you blue. It strange how things tend to happen when you talk about them! My face has been burning a lot lately so maybe it’s been turning red but not so bad it hurts my eyes. Maybe I didn’t notice and just started looking after we spoke of it. I don’t leave my house and don’t wear makeup so I can go days without really looking at my self!
I hope your feet do well in your boots Ellasharra. I would give my right arm to wear boots again. I’m a boot girl. I probably own 25 pairs of boots. That not counting my shoes! It’s been a few years since I have been able to wear them however. I haven’t given up though. They are in my closet just waiting for the day
Take care,
Alina
I can only comment on the sudden change of climate as there is no way I can walk in the sun or sit for long anywhere. But I flew right across the world from winter in the UK to summer in Tasmania and it was wonderful! I then was concerned that returning home three weeks later would be very hard as winter is worse for me but that was OK too. It was cold so I had the usual Raynauds/EM difficulties but no worse for having escaped for three weeks. Given a choice, and a lottery win, I would fly to the warmth every Winter.
That sounds like a grueling plan to walk so far each week. I wish you well and hope Italy lives up to expectations.
Ellesharra, Someone suggested an umbrella, which definitely helps a lot. I have found the best umbrella is the kind that has that silvery stuff on the underside. It blocks out much more heat than an ordinary umbrella. Mine has a fastener to attach it to a chair but the fastener works fine as a handle when walking. Have fun!
My eye flared again yesterday, I was stuck in a meeting room and the room got warm and my face and ears flared, then it went to my eyes, I have a USB fan by my computer, but couldn’t use it. Eventually excused myself and went and sat in front of the fan for 10 minutes.
Hi Nel, thanks, that gives me confidence that it might just be ok.
Thanks bluesnrocrol. I’ll look out for something like that.
Hi Ellesharra. I know you can't wear one in a business meeting but at home and maybe private in your office if you have a private office you can wear those facial cooling masks. You know the kind that fit over your eyes like a sleeping mask but eye holes cut out? You put them in freezer or fridge and I use them to cool my burning eyes. It really helps!
Hi all.
Just an update, since I haven’t been on very much.
Since going off gabapentin and starting taking aspirin each day, I feel so much better. My flares have reduced in intensity,and I’ve found it a lot easier to get to sleep.
I’ve given up on my GP but haven’t started looking for another yet.
I’m kinda waiting for the Xenon result to come back so I can decide whether to look for a GP or a specialist.
I’m also on the public system’s waiting list to see a dermatologist.
And in a weeks time I’m going to Italia!! So I am so excited that I’ve stabilised for the moment.
Thank you to Mads for checking in with me, and I’m happy I have the best kind of update.
I feel for those who are newly here and in the whirlwind of confusion, and those who are so much worse off.
