New member: Erythromelalgia or rosacea?

Welcome New Member Introductions
1

I have been battling with my condition for about 7 years. I had a battery of tests for allergies, and eventually my GP diagnosed (at my suggestion) that I had a nasty case of rosacea. Now however, I'm not so sure.

I am suffering an extreme flare up - I arrived in Australia, Gold Coast, to visit my son, a week ago, from the UK. It was unseasonably hot. Within 3-4 days I knew for sure I was going to have a flare. And, sadly, this has been the worst one I've had for years - in fact the most similar was the first time I had it.

There is a very distinct pattern to a flare..so if you can bear with me I'll describe it, as just maybe it might help someone to identify it as one thing over another - ie is it rosacea or erythromelalgia.

I can 'feel' it coming..I get a distinctive tingling in my flesh, particularly in my lips and in my 'nose to mouth' creases. Then my face starts to heat up, and it gets really properly burningly hot, and of course it goes very very very red. It hurts. Then it swells up (in the attached pictures the swelling has actually gone down a bit). That hurts too. This time the swelling went right up into my eye sockets. I looked like I'd been in a punch up. The pain is an intense burning sensation, there's some itchiness, and there's a sort of deep ache..that's not quite right..it's so tender and ultra sensitive, even to just moving around normally hurts in this odd aching way.

I manage it by trying to cool it with damp cloths, splash cool water on, sometimes I freeze a bottle with water and use that as a cooling pack - this brings real relief (I am quite careful to not go overboard with very icy cooling as I know that can be damaging, but it's hard sometimes as I simply feel like my face is on fire).

As it happens, my son lives with a doctor, he recommended to use ibuprofen and/or aspirin to ease the 'inflammation' and to take anti-histamine as well. I'm taking these as I can't see what harm they can do but it's impossible to know if they make any significant difference.

And then keep cool, out of the sun until things get better. Once this passes, I will be using 50+ sunblock (not sun screen), and I have a large hat. Just to be clear, I didn't spend any amount of time in the hot sun when I arrived and did use 50+ sunscreen as well.

This time I didn't get a symptom that I usually do, which is hot, burning swelling ears. But I did have a strange one that I haven't had for a long time, which is a very odd tingling itchiness in my lower forearms and legs.

The other thing I do is to use some kind of cream to ease my poor ruined skin. Once the flare has peaked, and is beginning to cool off and the swelling eases, the top layer of skin starts to peel and flake. It's very unpleasant...it is very hard and dry and uncomfortable if I don't keep it 'lubricated' as it were. Most things are too painful to put on my skin at this stage, but oddly vaseline with cocoa butter has been a boon this time. Absolutely no stinging and it has helped me manage the 'shedding' stage much more easily. That's why my face is so shiny in the picture.

I stumbled across something about erythromelalgia in a rosacea forum, and the symptons - especially the burning of my ears - seem to fit a bit better. I will definitely be running this past my GP when I get home.

But...if anyone has any advice or help I'd be so very grateful. I try not to let it get me down, but it has a massive impact on my life - there are a few days where I don't really go out, while it sorts itself out. I have had to miss work - I like to think I'm not vain, but I do feel very self conscious about it and can't help wondering what people must think (ie I'm a drunk..I don't drink alcohol at all because guess what...it makes me flush bright red!..).

Anyway. Big sigh. I look forward to hearing from the community. You all have my sympathy and best wishes with your conditions xxxx

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2

GinaK, I am so sorry. That looks terribly painful.
I have no experience of rosacea so can’t say if this looks more like EM. I have facial flares but not that severe or extensive but I have heard a description of facial EM which was much like yours. Which is not to say that she can’t have been wrongly diagnosed with EM.
It was brave of you to travel to the Gold Coast and bad luck that they have had such heat lately. I found the Gold Coast and points further north too hot for me even before I developed EM and I haven’t been out in sunshine longer than it takes to get in the car on my driveway for many years. I hope members with more knowledge than I have can give your some answers.

3

My face looks like that sometimes I was always being asked in the winter where had I been on holiday. People obviously thought it was sun burn as that’s what it looks like and in a way the pain is similar to really bad sun burn

4

Thanks for you reply Nel - I haven't been in the same hemisphere as my son for two and half years, so visiting was a no brainer for me. Now I confess I feel rather foolish, not to say pretty sorry for myself! Luckily my son is very kind and understanding - and the Gold Coast is a wonderful place. I just need to recover and take extra care from here on in, so we can enjoy the rest of the holiday.

Thanks again for you reply - it helps a lot, I don't even know anyone else who has rosacea..so I always feel a bit lost when I get flares.

5

I live in Cornwall with a lovely view of the sea but come the summer and I just can’t go and sit on my patio which I used to love then people keep saying roll on summer and I think roll on winter! I close my curtains as my lounge gets full sun.

6

Hi Gina,

I have had EM for about 18 months. A few weeks ago I started to get facial flares when I got hot. I do not have any other rosacea features like the typical facial redness over the nose and cheeks.I drink lots of water and try to keep my body temp down. (This all happened in our cold winter when I went outside and was likely overdressed) I use cool packs on my face when it flares. I was reading about a new type of rosacea called neurogenic rosacea. This new category sounds to me like facial EM. My rheumatologist is sending me to a dermatologist to confirm the diagnosis of facial EM. I already have a diagnosis of EM in my feet. I also have small fibre neuropathy confirmed on skin biopsy.

I am so sorry that you having this trouble. Hopefully you can get things sorted out soon.

Cheers Dragonfly

7

Not foolish at all but understandably disappointed. I set off for Australia full of trepidation two years ago, really scared of the journey and the heat but I had to do it as my daughter and three granddaughters are there? I was lucky though. Tasmania has a climate much like ours (I’m in London) and the visit went fine. Perhaps you should next time buy your son an air ticket and invite him to visit you:)




GinaK said:

Thanks for you reply Nel - I haven’t been in the same hemisphere as my son for two and half years, so visiting was a no brainer for me. Now I confess I feel rather foolish, not to say pretty sorry for myself! Luckily my son is very kind and understanding - and the Gold Coast is a wonderful place. I just need to recover and take extra care from here on in, so we can enjoy the rest of the holiday.

Thanks again for you reply - it helps a lot, I don’t even know anyone else who has rosacea…so I always feel a bit lost when I get flares.

8


Hi Sheltie, thanks for your reply! I was in Cornwall last summer, it's a wonderful place, it was my first time. And, oddly, I was there - camping for crying out loud - over the hottest weekend..!!!! And guess what, not a single sign of a flare up. I went with a friend (it was a bit of a mad-middle-aged-ladies gadabout, we had the best time) and we were out and about in the heat and sun all day long. Without much in the way of sunblock either...it's a mystery it really is.

I'm not a fan of hot weather (not sure that any british lass over the age of 45 is!!!!)...I just don't know what to think.

sheltielife said:

I live in Cornwall with a lovely view of the sea but come the summer and I just can't go and sit on my patio which I used to love then people keep saying roll on summer and I think roll on winter! I close my curtains as my lounge gets full sun.
9

Thank you Dragonfly...that really is useful information. It sounds like real understanding and research into the problem...I'll definitely be taking those ideas to my doctor when I get home.

In the past I've only been referred for allergy testing which turned up absolutely nothing - even though I do have a history of allergy (mainly hay fever, though that seems to disappeared in recent years).

Your reply is by far the most hopeful thing I've heard...thanks again x


Dragonfly said:

Hi Gina,

I have had EM for about 18 months. A few weeks ago I started to get facial flares when I got hot. I do not have any other rosacea features like the typical facial redness over the nose and cheeks.I drink lots of water and try to keep my body temp down. (This all happened in our cold winter when I went outside and was likely overdressed) I use cool packs on my face when it flares. I was reading about a new type of rosacea called neurogenic rosacea. This new category sounds to me like facial EM. My rheumatologist is sending me to a dermatologist to confirm the diagnosis of facial EM. I already have a diagnosis of EM in my feet. I also have small fibre neuropathy confirmed on skin biopsy.

I am so sorry that you having this trouble. Hopefully you can get things sorted out soon.

Cheers Dragonfly

10

How strange that you wee in Cornwall last year Ginak and weren’t affected. I was. Plus what made matters worse for me was that my husband was always cold so I couldn’t even attempt to cool it down a lot inside. Sadly I won’t have that problem this summer as he passed away from cancer in November last year. On top of that we didn’t get carers I had to look after him he lost the use of his right side when it spread to his brain so I had to do a lot of lifting of him and I have rheunatoid arthritis as well. It was a nightmare.

11

Funnily enough I suggested that we visit Tasmania as a 'treat'...something different I guess. We may well still do that as I'm here for another four weeks, plenty of time yet to recover and have fun. Maybe a visit home would be a good idea for my son, but no one, not even me, was expecting this to happen.

And, despite this, I'm still glad to be here. Who knows, maybe this adventure, and this flare up this time will lead me to some answers at long last?..it lead me here at any rate, and I'm very glad of that.

Nel said:

Not foolish at all but understandably disappointed. I set off for Australia full of trepidation two years ago, really scared of the journey and the heat but I had to do it as my daughter and three granddaughters are there? I was lucky though. Tasmania has a climate much like ours (I'm in London) and the visit went fine. Perhaps you should next time buy your son an air ticket and invite him to visit you:)


GinaK said:

Thanks for you reply Nel - I haven't been in the same hemisphere as my son for two and half years, so visiting was a no brainer for me. Now I confess I feel rather foolish, not to say pretty sorry for myself! Luckily my son is very kind and understanding - and the Gold Coast is a wonderful place. I just need to recover and take extra care from here on in, so we can enjoy the rest of the holiday.

Thanks again for you reply - it helps a lot, I don't even know anyone else who has rosacea..so I always feel a bit lost when I get flares.

12

You poor thing, I am so sorry to hear that. What a terrible time you had. I do hope that you are feeling a bit better, though it was quite recent really and I know these things take time to process - it must have been so hard.

sheltielife said:

How strange that you wee in Cornwall last year Ginak and weren't affected. I was. Plus what made matters worse for me was that my husband was always cold so I couldn't even attempt to cool it down a lot inside. Sadly I won't have that problem this summer as he passed away from cancer in November last year. On top of that we didn't get carers I had to look after him he lost the use of his right side when it spread to his brain so I had to do a lot of lifting of him and I have rheunatoid arthritis as well. It was a nightmare.
13

My EM involved only my feet and hands until I began having terrible flares involving my face and ears during menopause. Avoiding triggers (coffee, red wine, heat, steamed up bathroom, changing weather etc.) is obviously very important but there was and still is a complete randomness to some flares. Once a flare is to the intense state, I've never found anything to stop it but just wait it out with fans and refrigerated gel packs. Five years later it is better - I still have flares but the extremely intense ones happen less often. I don't know why it's improved so can't attribute it to any medication or treatment. I am grateful that it seems to be better but I am chronically apprehensive and spooked by the slightest tingle in my ear lobe or any warm sensation on my face. I am so sorry to read of your condition, GinaK, and hope that you will find relief.

14

Dear GinaK,

Your face reminds me of my own, most unfortunately, when I have an especially bad episode. Plus your description of feeling like your face is on fire -- exactly the words I use. In some ways, the burning ears are even worse than the face.

Like you, I've gotten diagnosed with rosacea, but the condition has never responded to typical rosacea treatments. Correction -- not to most. Recently I've tried a product for general redness as well as rosacea, and it seems to have helped (I'll go look up the name before I close this note). But because I run "hot" all the time, I usually use it just overnight.

In addition, the top dermal layer (one of my dr. calls it the dermal matrix) was apparently damaged by a couple of events over the past decade and a half: first, I mowed through poison ivy unwittingly and ended up with a systemic infection, along with extreme skin involvement ... I blistered badly on my face and forearms. Second, I tried a DIY facial peel product for brown spots ... my face blew up even worse than your in the photos, and now when I "flare," the pattern follows the destruction from these two events.

And THEN, I got bitten by a tick and developed a raging Lyme infection. The bite was on my midriff, and the rashing was worst on my upper body and face. I successfully killed off the Lyme, but then had almost a year of trying to resolve the Candida infection that was toe-to-forehead on my skin (nothing internal, strangely enough). That rash again followed the lines of the other events ... which is when my dr. declared the dermal matrix was irreparably damaged ... any rashing was following the lines of least resistance, whether rosacea or erythromyalgia.

So maybe I have both conditions (the rosacea was first diagnosed years and years previous to the poison ivy infection, based only on a red nose and one little bump that wouldn't heal; retin A prescribed but it was too drying). But the severe burning seems more like the EM to me ... I've done a LOT of research. Like you, I have what's called the "prodrome" -- the early warning symptoms, and I know what's coming.

But this can happen with or without warning, with or without sun exposure. In fact, sometimes sun exposure, without any sun block even, DOESN'T always result in rashing. It's enough to drive a person crazy.

When I researched EM, I found that some dr. believe it's related to nerves in the mid-back -- though this may be more about excess sweating than EM (even as a kid I've broken a sweat faster than anyone else around me, and it tends to be very heavy on my face -- combine this with the flushing and I often have people afraid I'm having a heart attack!). Anyway, there is surgery that can be done, but it's one of those 50/50 things: 50 % chance it helps, 50% chance it makes things worse ... and it's not uncommon for repeat surgery to be needed/done. To me, it's not worth the risk, although it's a close call at times!

As you do, when I am especially bothered by the heat and swelling, I use cold packs, carefully. I sometimes get relief from aspirin and/or Benedryl. Recently, I've been developing a rash on lower arms (again, location where poison ivy was especially bad) and upper chest. So far, these areas don't get hot or burn, but I wonder if it's just a matter of time before they do.

I've gotten so I avoid going places where I'd expect to be particularly hot and/or humid because either of those conditions will set me off 100% badly. As it is, sometimes in air conditioned stores, and in my a/c home, for seemingly no reason, I flare. Some incidences are pretty short-lived, and I seem to cycle into periods when every one of them is severe and lasts for hours.

None of this is helpful, I'm afraid, but I wanted to assure you that there are people who know exactly what you go through. When I am regular about taking them, several supplements usually help (both reduce how often I flare, and the severity of flares): hesperidin and ginger (which is both an anti-inflammatory and a vaso-constrictor). There is another that slips my mind at the moment.

Oh, the cream I spoke of earlier is "Facial Redness Repair," by TriDerma. I bought it online when I couldn't get more of another product by RosaceaCare (as I recall) that contains Strontium. Same company made a spray that was incredibly cooling and soothing, and effective. I used it during my Lyme infection and the Candida, which caused insane itching. Supposedly the company will have a new Strontium product coming out shortly. As soon as it does, I'll be on it.

I also just got a cream with sea buckthorn, specifically for rosacea. It's on the greasy side, even when I use just on my cheeks, so again, I use just overnight. It was also quite soothing, but I haven't noticed any redness reduction. This was also purchased online, probably through Amazon (I do a lot of online shopping, so I don't always remember the source).

Good luck to you ... hope whatever it is you've got doesn't get any worse. :-)

15


Thank you Viking. I'm on the mend now, but it's always so slow. It is so very useful it is to have your honesty about the condition - how similar your experience is, and especially to hear that there seemed to be no real discernable pattern or obvious triggers. Age and menopause is definitely a factor that I suspect affects things...but like everything else it doesn't necessarily take me anywhere useful. At least not at the moment...I don't get regular menopausal flushes, at least not yet...though I am most definitely in that territory age wise at 50. My mum had a hysterectomy after the birth of my sister, and I don't have any close female relatives to get even the vaguest sense of what menopause might have in store for me by way of genetics and inheritance.

I don't drink coffee (it makes me flush!), I don't drink alcohol (it makes me flush!). Even just eating (anything) can make me flush up a bit sometimes. I definitely don't like to be trapped in a too hot room, and like to keep my house pretty cool even in the depths of winter....I expect I could go on and on, trying to pick my lifestyle apart in an attempt to find a cause! I

Thanks again, it is really comforting to hear from fellow sufferers. Good luck to you too, hope your remission is permanent!

Viking said:

My EM involved only my feet and hands until I began having terrible flares involving my face and ears during menopause. Avoiding triggers (coffee, red wine, heat, steamed up bathroom, changing weather etc.) is obviously very important but there was and still is a complete randomness to some flares. Once a flare is to the intense state, I've never found anything to stop it but just wait it out with fans and refrigerated gel packs. Five years later it is better - I still have flares but the extremely intense ones happen less often. I don't know why it's improved so can't attribute it to any medication or treatment. I am grateful that it seems to be better but I am chronically apprehensive and spooked by the slightest tingle in my ear lobe or any warm sensation on my face. I am so sorry to read of your condition, GinaK, and hope that you will find relief.

16

Dear Lynne - thank you so very much for your detailed reply. I am very very grateful. And I feel like I am getting off lightly too, you poor poor thing, what awful experiences you have had. I really hope that you do find some relief.

I have used a product marketed especially for rosacea (because that's what I thought I had) called Dermalex Rosacea and Couperose. I found that it didn't make my very tender skin sting. It's light, and has a green tint (though it disappears on skin, but somehow I think that psychologically it 'feels' cooling because of the colour and frankly when I'm mid-flare I will take any comfort I can get even if it's a sort of visual swizz!).

Dermalex is an Australian product, though I buy it over the counter in the UK. I figured that I'd be able to buy some here once the flare started - but the two pharmacies I managed to get to (before things got really bad) said they couldn't see it on their order sites other wise they would have got it for me. Imagine my horror!

I bought some Dermaveen but it stings like billy-o.

I have also used a cream called Hope's Relief, another Australian product. That doesn't sting at all (I have some with as I basically use it as a day to day moisturiser. It's a funny brown colour due to the ingredients, and has quite a distinct scent, but it doesn't show on the face, and it definitely seems to help keep my rather dry sensitive 'normal' skin fairly happy and stable ('normal' = when I'm not having any flushing! It's alway a bit sensitive..like a flush episode is lurking in the background all the time, though I concede also that I'm probably fairly paranoid about it too). There are no steroids or anything in this, or any other chemically sounding nasties (though to be honest I'll try anything at least once if relief is a possibility).

If you do try these things I hope they help and are not a waste of money for you.

I also recently started taking flax, again that's a rosacea thing. I'll definitely try the hesperidin and ginger as they are new to me, and I'll look up the creams - if they've worked (or even just offered a bit of relief) for you they're likely to be ok for me as it sounds like you have much much more to contend with.

Good luck and so many thanks xxxx


Lynne said:

Dear GinaK,

Your face reminds me of my own, most unfortunately, when I have an especially bad episode. Plus your description of feeling like your face is on fire -- exactly the words I use. In some ways, the burning ears are even worse than the face.

Like you, I've gotten diagnosed with rosacea, but the condition has never responded to typical rosacea treatments. Correction -- not to most. Recently I've tried a product for general redness as well as rosacea, and it seems to have helped (I'll go look up the name before I close this note). But because I run "hot" all the time, I usually use it just overnight.

In addition, the top dermal layer (one of my dr. calls it the dermal matrix) was apparently damaged by a couple of events over the past decade and a half: first, I mowed through poison ivy unwittingly and ended up with a systemic infection, along with extreme skin involvement ... I blistered badly on my face and forearms. Second, I tried a DIY facial peel product for brown spots ... my face blew up even worse than your in the photos, and now when I "flare," the pattern follows the destruction from these two events.

And THEN, I got bitten by a tick and developed a raging Lyme infection. The bite was on my midriff, and the rashing was worst on my upper body and face. I successfully killed off the Lyme, but then had almost a year of trying to resolve the Candida infection that was toe-to-forehead on my skin (nothing internal, strangely enough). That rash again followed the lines of the other events ... which is when my dr. declared the dermal matrix was irreparably damaged ... any rashing was following the lines of least resistance, whether rosacea or erythromyalgia.

So maybe I have both conditions (the rosacea was first diagnosed years and years previous to the poison ivy infection, based only on a red nose and one little bump that wouldn't heal; retin A prescribed but it was too drying). But the severe burning seems more like the EM to me ... I've done a LOT of research. Like you, I have what's called the "prodrome" -- the early warning symptoms, and I know what's coming.

But this can happen with or without warning, with or without sun exposure. In fact, sometimes sun exposure, without any sun block even, DOESN'T always result in rashing. It's enough to drive a person crazy.

When I researched EM, I found that some dr. believe it's related to nerves in the mid-back -- though this may be more about excess sweating than EM (even as a kid I've broken a sweat faster than anyone else around me, and it tends to be very heavy on my face -- combine this with the flushing and I often have people afraid I'm having a heart attack!). Anyway, there is surgery that can be done, but it's one of those 50/50 things: 50 % chance it helps, 50% chance it makes things worse ... and it's not uncommon for repeat surgery to be needed/done. To me, it's not worth the risk, although it's a close call at times!

As you do, when I am especially bothered by the heat and swelling, I use cold packs, carefully. I sometimes get relief from aspirin and/or Benedryl. Recently, I've been developing a rash on lower arms (again, location where poison ivy was especially bad) and upper chest. So far, these areas don't get hot or burn, but I wonder if it's just a matter of time before they do.

I've gotten so I avoid going places where I'd expect to be particularly hot and/or humid because either of those conditions will set me off 100% badly. As it is, sometimes in air conditioned stores, and in my a/c home, for seemingly no reason, I flare. Some incidences are pretty short-lived, and I seem to cycle into periods when every one of them is severe and lasts for hours.

None of this is helpful, I'm afraid, but I wanted to assure you that there are people who know exactly what you go through. When I am regular about taking them, several supplements usually help (both reduce how often I flare, and the severity of flares): hesperidin and ginger (which is both an anti-inflammatory and a vaso-constrictor). There is another that slips my mind at the moment.

Oh, the cream I spoke of earlier is "Facial Redness Repair," by TriDerma. I bought it online when I couldn't get more of another product by RosaceaCare (as I recall) that contains Strontium. Same company made a spray that was incredibly cooling and soothing, and effective. I used it during my Lyme infection and the Candida, which caused insane itching. Supposedly the company will have a new Strontium product coming out shortly. As soon as it does, I'll be on it.

I also just got a cream with sea buckthorn, specifically for rosacea. It's on the greasy side, even when I use just on my cheeks, so again, I use just overnight. It was also quite soothing, but I haven't noticed any redness reduction. This was also purchased online, probably through Amazon (I do a lot of online shopping, so I don't always remember the source).

Good luck to you ... hope whatever it is you've got doesn't get any worse. :-)

17

Gina, I haven't spent much time on the subject due to many competing factors, but your posting got me hunting for new information again. I found several articles that link gluten/celiac problem with EM ... and something called small nerve neuropathy. Often someone with EM can be tested and found to have this type of neuropathy which is known to involve the face (unlike the more common peripheral neuropathy of the feet, secondarily, of the hands).

There is usually a relationship to a person's glucose tolerance (or intolerance) -- doesn't have to be full-blown diabetes. I've been told several times, after blood testing, that I'm "pre-diabetes." I feel better generally when I cut out almost all gluten and of course, cut way down on sugar of all forms. But I just haven't been successful at maintaining the restrictions long-term. Naturally, when I do both of these things, I lose weight without any additional effort, which is wonderful!

All this has made me wonder how many of us with EM also fit into the issues I just noted: At least sensitive to gluten; have a sweet tooth (maybe just an American expression?) or crave carbs such as bread and pasta , carrying extra weight, and/or may be walking a thin line regarding diabetes? I've read some astounding stats on how many people have diabetes or would be considered pre-diabetic, and have NO idea! Same with kidney disease, especially as we age -- it becomes too common, for a number of reasons.

And on your note about menopause -- my hot flashes/flushes really amped up as I approached it at age 55, but I had night sweats starting at 39. I am now 60, and I still believe I have hormonal swings that bring on a different kind of flushing vs. the EM ... this despite using bio-identical hormone replacement (but can't tolerate traditional estrogen).

Anyway, you may find it helpful to research the connections I mentioned. I know I am re-motivated to get off gluten again, and see if I notice any difference in the EM-type rashing and flushing -- it was a number of years ago when I last tried seriously. I'll let everyone know if I get any relief.

18

Dear Lynne

This is so amazingly helpful I could cry xxx Someone else also mentioned the small nerve neuropathy or something similar, so I will definitely look into that and take it to my doctor when I get back to the UK. I'm definitely not celiac, but even so it wouldn't necessarily be bad to give up gluten for a while to see what happened.

The diabetes thing is interesting - I've only once had a medic suggest that, but I was pregnant at the time so they were being extra careful, and in the end it was just that I was hungry!!!! But, I am quite plump. I've a tendency to be a bit less svelte than I'd like, but most of my adult life I've been pretty much ok weight-wise. Until the last 5+ years maybe, where I have definitely got heavier. I will chase that with my doctor as well, and I am sure they will be more than happy to test for diabetes anyway as it's such a problem. I have developed a sweeter tooth as I've aged, so there could easily be something in it and well, what do I have to lose???!!!! (well, actually I could lose more than a few pounds so perhaps a gluten free, sugar free diet is on the very near horizon)

As far as menopause goes...all the info seems so very very broad and vague. Apart from the flares, I don't seem to have any defininte symptons, not yet. I have a couple of friends who are similar age to me and they say they are both done and dusted with it..but with very very different experiences. It does seem a bit crazy in this day age to be so ignorant of it, and yet I have looked for information, and read plenty of stuff online. I guess I'll know soon enough though!

Good luck with your renewed efforts to find a solution - I too will keep searching and trying and let you know xxx


Lynne said:

Gina, I haven't spent much time on the subject due to many competing factors, but your posting got me hunting for new information again. I found several articles that link gluten/celiac problem with EM ... and something called small nerve neuropathy. Often someone with EM can be tested and found to have this type of neuropathy which is known to involve the face (unlike the more common peripheral neuropathy of the feet, secondarily, of the hands).

There is usually a relationship to a person's glucose tolerance (or intolerance) -- doesn't have to be full-blown diabetes. I've been told several times, after blood testing, that I'm "pre-diabetes." I feel better generally when I cut out almost all gluten and of course, cut way down on sugar of all forms. But I just haven't been successful at maintaining the restrictions long-term. Naturally, when I do both of these things, I lose weight without any additional effort, which is wonderful!

All this has made me wonder how many of us with EM also fit into the issues I just noted: At least sensitive to gluten; have a sweet tooth (maybe just an American expression?) or crave carbs such as bread and pasta , carrying extra weight, and/or may be walking a thin line regarding diabetes? I've read some astounding stats on how many people have diabetes or would be considered pre-diabetic, and have NO idea! Same with kidney disease, especially as we age -- it becomes too common, for a number of reasons.

And on your note about menopause -- my hot flashes/flushes really amped up as I approached it at age 55, but I had night sweats starting at 39. I am now 60, and I still believe I have hormonal swings that bring on a different kind of flushing vs. the EM ... this despite using bio-identical hormone replacement (but can't tolerate traditional estrogen).

Anyway, you may find it helpful to research the connections I mentioned. I know I am re-motivated to get off gluten again, and see if I notice any difference in the EM-type rashing and flushing -- it was a number of years ago when I last tried seriously. I'll let everyone know if I get any relief.

19

So sorry for what you are experiencing on your vacation.

I have rosecea as well as EM. The rosecea doesn't look like what I see on your face -- mine is much more like acne and is controlled through diet and a topical cream (Noritate). My face gets very red with mild exercise, but the redness usually subsides quickly.

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Thanks for your thoughts Penny -I've never had the acne type break outs, so I feel for you..it must be incredible hard, having to manage and treat another thing on top of everything else. These conditions are so unpleasant.

I'm getting over this flare..but slowly, slowly as always. Finding this forum has been amazing. People are so kind and helpful, it has made a world of difference to how I feel. I hope I can offer the same comforts to others in the future.

Good luck in managing your problem.


Penny G said:

So sorry for what you are experiencing on your vacation.

I have rosecea as well as EM. The rosecea doesn't look like what I see on your face -- mine is much more like acne and is controlled through diet and a topical cream (Noritate). My face gets very red with mild exercise, but the redness usually subsides quickly.