Domina....That is exactly what happens to me when I get facial EM caused by any kind of warmth sun or no. I try my best to never be in the sun as this just makes it that much worse. At first they thought I was allergic to the sun but I kept telling them it happened all of the time even when inside my house with no sun! My most recent doctors appointment she was just amazed because I was flaring in her office and My face was not only red and warm but swollen as you said including over the eyes! I have told her about I before but this is the first time she has seen my facial flares.
I am so glad you have managed to avoid it since then. Mine comes and goes and it is presently in my face but milder than it has been lately so hopefully on the way out!
Take care,
Alina
Domina said:
DminaWho knows - I always had a sunburn on my chest spring/summer - it itched and burned but the skin never peeled (like it should have if it was really burned). Was that EM? In 2012 my feet started itching late evenings and then I had this strange feeling, as if I had put a heating pad on my back. EM? I believe so, because in the summer of 2013 my hand showed the red, burning symptoms and abut 6 months later my feet followed. (self diagnosed and confirmed by a dermatologist). And that's where I am 24/7 hand and feet pain, some of it seems to be nerve pain, like having been scraped with sandpaper.- My chest still shows signs of sunburn even so it's not exposed to the sun, my throat , my ears and my eyelids turn red without pain and my whole body has a feeling of being too warm inside.
Wow! I am so sorry Otrame. That is such a long time to suffer so. I hope that now that you have a diagnosis you will be able to find some treatment to lessen your symptoms. May I ask if you are always so bad that your toenails fell off or does that severity come and go?
I ask because a couple of years ago mine was so bad it was 24/7 and intense swelling. I developed sores all over my feet and several toenails just fell off like you mentioned. This lasted several months where I had to have my mother fly up to help me from day to day although I live with my husband but I couldn't even mange while he was at work It just got better after a few months. Not great but better. I can manage as long as I satay home in 63 degrees and do very little activity. No more than 5 to 10 minutes max on my feet trying to do things around the house before I put my feet up and take a break.
I ask because I am scared it will turn into that again. I have tears forming as I write and think about that time and am so grateful to be in the condition I am today. I sincerely hope your is at worst like mine that gets better and worse and you haven't been suffering like I did for those months that I was bad enough to have my toenails fall off.
Take care,
Alina
otrame said:
I've had EM that interferes with my life for 35+ years. Did not get a dr diagnosis until 5 years ago. Have lost all of my toenails, and haven't worn anything but sandals for over 20. I own some clog sheepskin slippers with heavy sole for when it snows occasionally, so I can slip them off when the burning is too intense. Good luck everyone.
Hi Betty. I am so sorry about your mom. I totally get that. I have had too many nights in the ER from intolerable pain. May I ask what temp she keeps her house? I ask because It may seem like nothing is provoking her flares but if she is like myself very mild warmth....I call it warmth normal people call it cold! Temps above 63-65 trigger flares for me. I am still cold at 63 like a normal person but not flaring as much. I would rather be cold than burning. She may want to try cooling her home if she can to these lower seemingly ridiculous temps it may help give her some pain relief greater than any meds can provide.
Even at those temps I still get flares but much less often. When this happens I use fans on the effected area and CHILLOWS . CHILLOWS are amazing and so cool for spot treatment. You can find them online and in some drug stores. She may find herself too cold as she should it is 63 degrees! When this happens I just cover extra but don't get carried away with a coat or anything. That will warm her too much and effect her whole body. II will throw on a robe to warm my shoulders a bit but My feet hands knees and face are exposed to the cold air. These are my problem spots so just adjust for her needs. She should be able to move around her house a bit more at these temps but you still can't get carried away! 5-10 then sit and take a break. I can't guarantee this will work for her but it has made a life changing improvement in pain and hope it may do the same for her.
Take care,
Alina Bety said:
My mom's is very recent just for 4 months but is very intense, most days and nights, some days are worse than others without any apparent triggers, just now she is going to urgent care she says is a 10( in a scale of 1-10) she is on lyrica but is not helping. Prior to it she got purpura back in January and after that EM developed.
They ebb and flow. I joke that I know that I'm awake by the fact that I'm scratching my toes. I'm lucky in that most of the flares I experience are limited to the toes, and heels. A bad flare can be the entire foot to the ankle, but they are rare. I have some in my fingertips, and my fingernails are deteriorating. I have had a recent dx of psoriasis in my nails. I lost my toenails over the course of 8 years, and they still cycle through, and the skin on my toes have changed completely.
The only thing that has ever helped is pentoxifylline. I had to stop taking it due to heart issues, but my family doc has okayed me to try 1x daily, and I just restarted it yesterday.
I know you are near me geographically, so I share your misery on a hot day.
Triggers for me are stress, grass, especially wet grass, which results in bleeding in the days to follow, exercise and extreme temps. I do walk daily on a treadmill for 15 minutes.
I have been dx with sarcoidosis, but unlike most, my main symptoms are fatigue, malaise, lethargy, muscle weakness and lack of endurance to do anything.
I had an episode this last winter of progression, thus my renewed quest to find answers. Good luck with answers and solutions, c
Thank you. I did have a better night last night. I climbed into bed about 6.30 pm and got some good sleep. I woke often, hot and sore, and then woke up very early but I got better sleep. I remember waking a couple of times after dreaming and this usually means I've slept more heavily. I'm sore but not quite at the 'sandpapered' level last night or today knock on wood. Sorry to hear you are experiencing it and that it is happening on the worst level. I hope you get some relief soon.
I don't disbelieve you on the moon stuff. To quote Shakespeare (or perhaps to misquote, lol) "There are more things in heaven and on earth, Horatio, that are ever dreamed of in your philosophy." I'm going to buy myself a wide-ish silver bangle one day and have that quote engraved on it. That way I get to remember that no one knows it all, even if they are misguided enough to think they do. And when ever anyone wants to question the validity of what I say is happening to me, I will then be able to draw their attention to the bangle and the quote.
It must be hard to know that pain levels are going to increase for sure at certain times -- full moon and new moon, in your case. I do know that I can often anticipate increased EM pain or Migraine pain at times of greater stress. EG. I'm often a mess at Christmas time. But the pain has to be there first. It doesn't happen just because it's Christmas. Sometimes though, even with really stressful things, I can get through with no real flares. And yet, if I'm in a bad way, a little argument with my husband can make it so much worse. At times like those all I can do is sit tight and ride the wave, the going up in pain levels, the levelling off, and then wait, and wish, for the drop.
blue.
Domina said:
Hi blue, sorry that you suffer the same pain and hope you have a better night - during the day my feet are usually cold, but the *sandpaper-pain* is still there. Today is one of my worst - always the same - New Moon and Full Moon get me every time - the only reason for my flares to get worse for a day/night. Others are laughing when I make that claim about the moon, but I know that is what happens.
I wrote a rather lengthy repsonse to you but then somehow I 'lost' it. I realized I was holding my breath when I read your post, when I read that you'd had EM for 35 plus years. I really hope you can find some new answers here.
My feet do get really cold at times too. This is a fairly new thing for me. I was actually thinking about getting some ugg boots to wear out if I have to go out of the house when my feet are cold and and tender. But your sheepskin clogs sound like a better option. As you said, easy to slip off.
blue
otrame said:
I've had EM that interferes with my life for 35+ years. Did not get a dr diagnosis until 5 years ago. Have lost all of my toenails, and haven't worn anything but sandals for over 20. I own some clog sheepskin slippers with heavy sole for when it snows occasionally, so I can slip them off when the burning is too intense. Good luck everyone.
Sorry that you have had such trouble communicating with doctors. Such a common experience, I've found, unless one has a common illness. I just know that if I am diagnosed with type 2 diabetes (I am trying hard to reverse a pre diabetes state) that I'm going to hear that it's diabetes neuropathy or something
Despite my long standing 8 plus years of EM and POTS diagnosis. And having perfectly normal blood test results back then that in regard to the diabetes stuff.
I am glad to hear that you are on meds for scalp pain that help with your EM. Can I ask what they Are?
Blue
Wearsahat said:
My EM began in 2000 without warning or any prior symptoms. Of course no doctors knew what it was and I went from one specialist to another without any hint that this was a bona fide condition! Only through my own research on the internet, searching under 'burning feet' did I finally find the accurate and precise description of what I was experiencing!! I had had gestational diabetes with my pregnancy in 1994-1995, and about 5 years ago was diagnosed with type 2 diabetes. So of course doctors are now attibuting my foot pain to diabetic nerve damage, and of course none of them understand EM, even though I have provided them with print-outs of the condition. I have given up finding a doctor who is familiar with EM and who could actually diagnose my symptoms. But my symptoms are being controlled by medications I am taking for the burning and extreme pain I have in my scalp too! One doctor, a neurologist who specializes in headaches, has been willing to treat those symptoms, even though they are not actual headaches, but rather extreme nerve sensitivity in the scalp. The side bonus of those drugs is that they take the worst of the unbearable pain away from my feet too. Still, I cannot walk or even stand for long before the pain in my feet becomes triggered, along with the searing/burning sensations too.
Don't apologize for being long winded. Truly, with this stuff the more detail the better, i think. I have had migraines all my life but since I turned 40 they have grown vicious and can last for days. That is 18 years ago and still I get migraines that can last for three days although they occur less frequently now, due to opiate medications. I am convinced that, for me, migraines, EM, POTS, increased allergies and a few rounds with anaphylaxis of both the immune type and the non immune type that they are all tied in, absolutely. Whether one triggers the other, or/and my pain pathways/grooves have grown deep and wide ( my non medical description of evolution of pain), i just don't know.
I mostly avoid the hot sun and I haven't experienced that strong allergic? Response to the sun. It would have really frightened me, too.
I am off to look up zombi simile. Lol. That's my auto correct. It mostly drives me nuts but it does Come up with some hysterical phrases. I'm off to look up Zonisamide.
Thank you
Blue
Mona said:
Hi blue,
I was diagnosed with EM last September after bad symptoms for maybe a year. However, knowing more about the symptoms I now realize I was experiencing some quite a bit earlier. Fore instance I noticed my feet burning after walking briskly in 2005 or 6. Before that my feet were usually very cold and I would have to wear socks to bed. But then at some point I remember starting out in bed with socks on my feet, and then sometime in the night waking up to rip them off because my feet were on fire. It would take a long time for them to cool off.
In 1998 I was diagnosed with peripheral neuropathy, but we were living near Naval Station Naples in Italy, where my husband was stationed for 3 years. The military had limited medical facilities for determining what was going on with me while living there, so it wasn't until we returned Stateside in 1997 that the search began in earnest. I can actually remember having foot pain from 1979. It just grew worse over time and of course would grow more or less uncomfortable depending on my weight fluctuation. The doctor who diagnosed my EM at Mayo Clinic told me mine was probably due to my longstanding "acquaintance" with peripheral neuropathy.
It was during the summer of 2012 that I became aware of my hands and face behaving oddly, i.e. growing very red and hot even when it wasn't that warm. But I do remember one incident earlier on that rather scared me. I was sitting on our couch reading with my back to the late winter sun shining in through a window on the back of my head, and gradually became aware that my face was blowing up! I got up and looked in a mirror and it looked like I was suffering an allergic reaction to the sun!! It was swollen, puffy and bright red. Fortunately I haven't had that experience since, but I haven't put myself in the sun like that again, either. :-/
At this point I am thankful to be helped by gabapentin and zonisamide. Sorry for being so long winded!
I have had EM symptoms in my feet for over 2 years. I had an operation for tarsal tunnel last year which made things worse. I finally found an orthopaedic surgeon in April who confirmed that I had no structural foot problems and said he suspected EM. He advised I should see a Reynauds specialist who is interested in EM and my appointment is next month. Since I did some internet research and found this group I realise my symptoms are classic EM. Told my GP who had never heard of it. It’s been a long road but I feel sure I will get an official,diagnosis soon and some support from the NHS, and possibly even find an underlying cause. This group has been a great support with both information and practical suggestions. My husband has been a great help but he can’t really understand what it’s like to live with constant burning and pain, and loss of mobility. Not being able to stand for more than 5 mins at a time is far worse than not walking! All the mobility aids are designed to help you walk, but I can walk fine for the 5 minutes I can bear to be on my feet.
First major flare was March 2013. I had a severe allergic reaction to something dec 2012, and following my Er trip for it, I noticed a lot of numbness in my hands/fingers and then toes. The Em started shortly after