Of all the symptoms I read about for EM I am not 100% sure it is EM that I have but most of these stories sound just like what I am going through! I have not been diagnosed with EM, I have seen the nurse practitioners here at my school and a rheumatologist and no one has ever given me a diagnosis. The reason why I think it is NOT EM is bc it isn't an every day all year long thing. It comes and goes and I think it is seasonal. Does anyone else have it like that? Could it be EM if it is just seasonal? It lasts for a few months then goes away on its own. It first started in 2010 and I searched the internet for some answers and never found anything and then it went away so I forgot all about it. This year it has just come back and it is most painful than any other year I have had it.
About what I am experiencing and my symptoms, I have severe itching on my palms and webs of my fingers as well as my soles and webs of my toes. It only happens at night, with little spot itching throughout the day. By spot itching I mean one tiny spot on one foot or one hand that bugs the living crap out of me with the itchiness I am stabbing and poking it with needles to gain some sort of relief! And by night time the itching spreads all over to both my hands (palms) and both my feet (soles). The first day it came back (a couple weeks ago) it was so painful when I walked on my feet it felt like walking on pins and needles. BUT it hasn't been that painful again. My hands and feet are super red and feel hot and because they itch so much and all my scratching, the friction causes more heat. I stay up scratching and eventually pass out (I am a hypersomniac that can usually fall asleep within seconds even mid conversation and not even in bed, but with this itching it keeps me up for an hour before I pass out) and in the morning I wake up an no more itching! My hands and feet are normal color and are fine?!
So, putting together all of the allergies I have and the fact that I'm itching I thought this was an ALLERGIC reaction. I take claritin, benadryl and rub anti-itch cream all over my hands and feet with no relief. But I am so used to allergic reactions I break out in hives a lot and just thought this was a different kind of hives or rash. I went to take an allergy test and found out foods I am allergic to and stayed away from them and connected that to the itching. Well now that it has come back and I am not being exposed to any of those food allergens it has me puzzled again!
So I endlessly Googled some more and found this site which seems to have a lot more connections with what I have been going through. Some discussion posts say cold helps and that is true for me too! Some say vibration triggers the itching and pain and I realize now looking back at my life, that happens to me too! I can't stand the vibrating massage chairs bc it makes my back itch. One thing I haven't found on here is anything about exercising, (I just joined so haven't seen the archives LOL) Does anyone start itching on the most fatty part of your body when you are working out and over heating your body? I get itching on my thighs, butt and stomach and always just thought that was because I was burning fat! LOL
I guess what I am trying to gain from joining this group is somewhat of a confirmation that I could possibly have EM. And what specialists y'all would recommend seeing to get this diagnosis. Nothing is more frustrating than having something wrong with you that no one has ever heard of and can't give you an answer to! I have seen people on here that see dermatologists, rheumatologists, neurologists, etc. so is there one specific kind of specialist I should start off with? The new nurse here says it sounds neuropathic and prescribed me neurontin and I haven't started taking it because I don't want to be all medicated :( any advice, insight, suggestions or support would help me out so much! Thank y'all!
Hi audrieann,
This is a puzzling one, not least because symptoms disappeared for such a long time. In my case, because I have Raynauds too, it is seasonal in so far as I flare more in the Winter and in Summer can avoid bad flares by staying cool. Cool is good, hot is bad but extreme cold is the worst with burning flares which can go on for half a day. The itch I can relate to as I seem to itch everywhere I overheat from my scalp down to my toes but not specifically between fingers or toes. I take double cetirizine and slap on the anti-itch creams as at its worst it can drive me crackers.
Obviously we can’t give medical advice but in my case a neurologist was first to diagnose, insisted from early on that the whole thing is neurological and is the only medic who has remained interested in my condition.
I hope other members can be more helpful.
Good luck.
Yes, exactly, which is why I am not so sure this is EM. All the other symptoms match but it comes and goes? It seems heat makes it worse, and in the winter, unlike you my feet are ice cold and white and even wearing 20 layers won't warm them up. Its like I have no circulation in them? I have to use a heating pad to warm them up bc my toes are like little ice cubes. Same with my hands, they freeze so fast in the winter it feels like I have frost bite in my fingers. And when I say "winter" I'm in south Texas! LOL we don't even get snow down here but its super cold to me! I'm just really sensitive to temperature change I guess? Because come summer time I sweat so much and so fast. But any who, so yes, it comes and goes, I haven't kept track of it to know if there is a trend and if it really does come when it starts warming back up here. Also, isn't it odd that my feet can't warm themselves in the winter? That just doesn't make sense to me! My body is weird.
Much of what you're describing still sounds mostly like allergies to me, though I would say airborne, not food... and maybe some neuropathy thrown in for fun. Especially the way you describe it being your palms, the webs of your fingers, one tiny spot, and sweaty places all over your body.
I itch with anything that opens up your pores. Vibrating things, hot showers, exercise... all can produce that type of allergic itch for me. And it can be a doozy. But this isn't part of my EM symptoms, and I think is actually a very common reaction for people with strong allergies that many people just don't talk about. (I often don't have hives either in these instances, I just get red and itchy.)
At least for me, the EM flares are a very different sensation... there's a deeper type of swelling, it has a deep ache, it's usually both hands and/or feet. The tips of my fingers always look worse than my palms, and I don't notice the webbing in my hands at all. It's always starts in the tips of my fingers and toes, the extremities, then spreads up to palms and soles of my feet. I never have tiny spots of it.
Hope that helps at least some... You might have EM too... just perphaps not all of these symptoms are part of it.
This is actually not so weird. =) Sounds like Raynaud's (which many of us have too, and is pretty common). Your body pulls heat from your hands and feet, especially fingers and toes, to keep your core warm.
EM is kinda the reverse of that, and often called "inverse Raynaud's" -- you get hot and your body pushes too much blood to your extremities.
Because EM is temperature related, it is much worse for some people in the summer than winter. Track your symptoms and see... is it more like seasonal allergies, seasonal warmth, or something random bringing it on?
audrieann111 said:
Yes, exactly, which is why I am not so sure this is EM. All the other symptoms match but it comes and goes? It seems heat makes it worse, and in the winter, unlike you my feet are ice cold and white and even wearing 20 layers won't warm them up. Its like I have no circulation in them? I have to use a heating pad to warm them up bc my toes are like little ice cubes. Same with my hands, they freeze so fast in the winter it feels like I have frost bite in my fingers. And when I say "winter" I'm in south Texas! LOL we don't even get snow down here but its super cold to me! I'm just really sensitive to temperature change I guess? Because come summer time I sweat so much and so fast. But any who, so yes, it comes and goes, I haven't kept track of it to know if there is a trend and if it really does come when it starts warming back up here. Also, isn't it odd that my feet can't warm themselves in the winter? That just doesn't make sense to me! My body is weird.
Hello audrieann111.
Of course I can’t give medical advice to if this is in fact EM. I can just share what I have experienced. For me EM is less of a disease in itself and more of a symptom of a still not known condition. I have been told by a doctor I have a neuro vascular instability but he’s not sure why. Worth that I get EM , burning , warmth itching , stabbing and electric burning needles with extreme pressure as if my blood vessels will explode. With cold I get Raynauds’s , pernio , Levi do reticularis. Like yourself I find in winter I often can’t get my feet warm often for a month or more at a time. That is except for the times it still decides to burn and when that is done it returns to freezing.
Everyone’s EM is different with some coming and going while some have or 24 /7 and some have it only at night or in high heat while some get it most days but it comes and goes through the day in response to mild warmth like 65 ,70 degrees. I know many of us flare with exercise because this causes or bodytemp to rise and it’s in response to the heat generated .There is almost no rhyme or reason to this often making it extremely difficult to diagnose.
That said there may be other reasons for similar symptoms and only your doctor can help rule out another cause.
I would talk with your doctor again and express your concerns regarding the meds and maybe you can try them at a lower dose or for a short trial period to see if they help or make you too drugged your uncomfortable continuing.
I hope this isn’t EM for you and it’s something that can be fixed easily.
Audrieann, the thing about the cold is that my feet freeze white then react with a heat flare. As for the itch, I have been tested for allergies and not found to have any. I see it as a kind of heat rash because the heat in my body generally would probably power our electric lights if I knew how to harness it.
I don’t get a deep ache with a flare. Mine in my feet start with a kind of buzzing and then shooting pains in my feet and up my legs and lastly the burning. EM in my hands starts with a sore tingling at the ends of my fingers, then the swelling and burning and of course deep red in colour. EM in my face makes the eyes hot and sore and ears and nose feel and look swollen, bright red and itchy burning.
There are so many different manifestations of EM that I doubt two of us have exactly the same triggers and symptoms.
To me your symptoms sound more like Raynauds than EM but I’m no doctor.
Good luck with your search for understanding audrieann.
Yes, the sensation you describe is sort of what I feel. Bc when I have an allergic reaction I am itching on my skin and there is a visible rash. Its on the surface. And when I have THIS kind of itching and people ask what is it? What does it feel like? I tell them its itching! Like INTENSE itching, doesn't feel like a normal itch it feels like it is UNDER my skin. And my skin is totally smooth, no bumps or hives just redness and burning. So they think I am crazy bc they look at my hands and feet and don't see anything.
I noticed the itching in the webs is something I haven't seen on here either. But like I said the intense burning itching on both hands and feet at night start out with a small itch mostly in the webs during the day. And when I have that small itch in the day I know I'm going to have a major reaction/flare up that night and sure enough, I do.
It's like, what I have is "pieces of a puzzle" that don't fit together to make a single picture. I was going to see a dermatologist or ANOTHER allergist but the nurse practitioner told me to see a neurologist so now I don't know. And the wait time to see a specialist might take me a year.
But thank y'all for your responses! I really do ramble on, sorry! I just feel like y'all understand the frustrations better than most people who look at me like I'm a weirdo. I just want to get to the bottom of this. :(
EM is responsive to cold and elevation. Have you done an elevation test? Lie down and elevate your feet above the level of your heart for 30 minutes. If it's vascular, that should temporarily lessen your symptoms.
Yes I did try elevation and ice packs but I’m not sure if that’s what made it go away bc It didn’t help right away. Does it usually have instant relief?
Best of luck figuring it out!! I think most of us have had many riddling days trying to figure out what's going on. And I think many of us have multiple conditions, too... so it's hard to figure out what symptoms are part of what...
Hang in there. Stay cool. =)
audrieann111 said:
Yes, the sensation you describe is sort of what I feel. Bc when I have an allergic reaction I am itching on my skin and there is a visible rash. Its on the surface. And when I have THIS kind of itching and people ask what is it? What does it feel like? I tell them its itching! Like INTENSE itching, doesn't feel like a normal itch it feels like it is UNDER my skin. And my skin is totally smooth, no bumps or hives just redness and burning. So they think I am crazy bc they look at my hands and feet and don't see anything.
I noticed the itching in the webs is something I haven't seen on here either. But like I said the intense burning itching on both hands and feet at night start out with a small itch mostly in the webs during the day. And when I have that small itch in the day I know I'm going to have a major reaction/flare up that night and sure enough, I do.
It's like, what I have is "pieces of a puzzle" that don't fit together to make a single picture. I was going to see a dermatologist or ANOTHER allergist but the nurse practitioner told me to see a neurologist so now I don't know. And the wait time to see a specialist might take me a year.
But thank y'all for your responses! I really do ramble on, sorry! I just feel like y'all understand the frustrations better than most people who look at me like I'm a weirdo. I just want to get to the bottom of this. :(
Wow, I was typing a response when all of you commented, thank you for all your insight! :)
NEL: I did express my concern about the neurontin bc I don't want to be medicated and taking pills and she still gave me the prescription and told me to try it for a few weeks to see if it helps. Right now, I feel like I don't want to take them but come night time when I am itching and want to chop my hands and feet off I'm sure I'll take the pill :( Maybe if it does help, it could narrow it down to some sort of neuropathy. And what you are saying about your body giving off so much heat is just like me! My fiancé says I feel like a curling iron in the morning. During the night my body produces so much heat and I've always been like that. But the itching and burning is only at night?
ALINA: I agree that no two people will be the same in their symptoms, and the fact that everyone has different symptoms makes it so much harder to understand. I had never heard of EM until a week ago when I found this page. Every doc I have seen never once mentioned this, it's like not well known down here? I don't know.
After a week or two trying out this neurontin and my followup I'll more than likely make an appt with a specialist of some sort. Maybe neurologist or dermatologist. It would be nice to have an answer for when people ask what is wrong with me.
I just saw the photos on this page! I'll try to take a pic of mine tonight
Yes I did try elevation and ice packs but I'm not sure if that's what made it go away bc It didn't help right away. Does it usually have instant relief?
Yeah, relief is immediate (within minutes) and temporary. It has no lasting effect, as reduced blood flow to the extremities ceases when elevation is discontinued.
like audrieann111 mentioned cooling and elevation only helps while they are cooled and elevated. As long as what triggered it is still happening ie night time or too warm of an environment it will start up again. For me elevation alone only helps with the pressure and burning electric needle pain but not the warmth and burning/ itching. Depending on how bad off I am it may take 20 to 30 minutes before I notice any real relief though. I also must caution against use of ice unless consulting with your doctor first because if it’s too cold such as directly on the skin or just left on too long this could cause damage to the skin and never creating further pain and complications. I use air conditioning , fans , water mister , and chili pads for my Cooling. I’m sure others here have other tricks of their own. You can check more out in the discussion I think is called cooling tips or something like that.
That makes sense Alina. When I tried the elevation and ice packs it was probably only for 10-15 minutes and the itching was just so intense I kept looking for rough tools and brushes to scratch with I am probably going to damage my skin but it seriously drives me insane.
And no worries CarterDK I’d like to know that as well!
Audrieann, itching is constant at some level. Flares usually start after 1pm but sadly are sometimes all day. Best time of day for me is 4 am until I get out of bed at 6 if I am swimming and 6.30 if I am baby minding. I have never had a flare between 4 and 6 am. I believe that if I could stay in bed until 8, say, I would be flare free from 4 to 8. It’s just my bad luck that I have to be up so early.
Elevation by the way works immediately if my legs are high above my head and the flare returns the second I lower my legs!
My flares only itch sometimes. Usually the worse they are the more they itch like last night. Come to think of it they usually only itch at night. I don’t know why. I flare during the day as well but normally without the itch.
I am probably going to damage my skin but it seriously drives me insane.