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1

Hello everyone

I've roamed through this site for many months before joining, not being sure this is really where I belong. So, my first post here will consist in trying to get an answer.

Rewind: Winter 2012/13 I notice that the tips of my 2, 3, 4th fingers (left hand) become insensitive in low températures (0-10°C) and white. I'm not too surprised since i have always lived with very cold hands and feet.

June 2013: I notice that the veins of my hands are bulging with apparently no reason. I put it at warm weather's door. July shows some improvement. Unlike august, september, october, still with bulging veins. November spirals down and so does my stress (I've been chronically depressed for 35 years. I'm 50 now). I then really begin worrying. Every night (being a musician, I'm a night owl, getting up at 3pm and going to bed at 8am) my hands flush with heat and blood in the hours before bedtime with no reason; In december, the situation gets worse, with spontaneous and short flares in hands every hour or so between the 2nd and last meal of the day (night time in my case). Flares begin happening in feet too, knees (I could even show to a clueless physician a big and spontaneous hematome from the flare), face. BUT, and this is a big BUT: no pain, no itch whatsoever... And that maybe what held me a long time from joining this site.

I'm a pianist. My hands are (were...) impeccable, very beautiful and I can say that they have always caught a lot of attention, particularly from the ladies. I am completely aware of the futile nature of such a remark, given all those among you who suffer whereas I have no pain. But this is for me a very very distressing condition.

What did I try?

Well, first, I was placed under some mild antidepressant: 5HTP, a precursor of serotonin. I had immediate relief when sleeping, with no longer hot feet and trunk in bed. In the daytime, things were unchanged. After three weeks on ths med (only 50mg before bedtime), i noticed a decrease of the spontaneous flares. But, with exercice, even mild, hands would still flare. having no pain, I tried to go through hypotheses. There were 4: 1) hormones (I've been taking relatively high doses of antiandrogen against hairloss... but for 10 years). 2) thyroid (I had some minor problems with hypothyroidism some years ago) 3) depression (hot flashes are said to occur, but doubtly so in fingers and toes) 4) tretinoin (I've been taking this for décades with no problem so far, and never thriugh oral route (no accutane).

Of course, bloodtests returned normal.I had to stop 5HTP for... male reasons. I think some of you could try it.

I then accused some hairlotion with my flares. I had begun applying it at the time when my symptoms appeared. But 4months after stopping, no improvement.

So, what does it look like now?

1)On getting up, my hands are always in a dire condition: red, flushed from the heat of bed and sheets.

2)Between breakfast and lunch, if I stay home, I can manage no flare on the condition I do not do any kind of exercice. If I go out, have a fast walk or something, my hands flare (they are currently flaring, as I type my story (remember: night owl, lunchtime=your dinnertime)

3) Between lunch and dinner: the spontaneous flares after lunch (i guess it's from the absorbed calories) are back since mid august. They drive me crazy...

BUT: still no pain, no itching...

Another curious thing is that i may feel some mild flares in thighs and knees when for instance I put a garment on, that covers those regions. But this flare doesn't reach my feet.

I must say that my Raynaud must be considered as relatively mild. Only blanching, never blue, no pain either.

Another curious thing is that thumbs are often the first digits to be flushed with blood when i flare (EM), whereas Raynaud is supposed to leave them untouched. So, is the link so obvious?

As to aspirin: I tried it twice six months ago: no effect.

But: i tried it yesterday agan. 330mg before lunchtime. I had no flare for the following 8-9 hours, and even a wonderful agreeable sensation of ease and normality in both hands and feet. But the flares came back just as i went to bed. And when I got up today, they were rather worse than usual... So I'm currently holding up aspirin.

I also tried estrogenic essential oils (against hot flashes) with some success at the beginning, and then no more. Placebo...

Of course, I may be considered here as the luckiest yet, since I have no pain. But then I have to ask all of you: is it EM or not? Can EM be painless? "itchless", "tingleless"?

Thank you everyone for reading me.

2

Thank you Tizzy for replying. I'll try to upload photos soon since I have daily flares. By the way, do people here have daily flares, since I've read in a british study with 45 EMers that the average weekly flare number was... 1.46 !! Does the average EMer have daily flares?

Another symptom I can think of. The minute I wake up after sleeping, I may feel reasonably hot under the sheets. Then the immediate thought of my current situation and stress rushes flows of blood and heat to my hands and feet. In an instant...

Aspirin: i felt some comfort in my hands and feet, no doubt, but the usual discomfort is from coldishness. Slight pain, even. Whereas no pain on hot flares. What time of the day do you take this 75mg? Daily?

No psoriasis. The swelling of my fingers remains moderate. No swelling in the rest of my hands. No real swelling in my feet either.

Elevating my hands deflates my veins, yes, but this is a natural gravity phenomenon. Dr Cohen thinks that EM attacks are infallibly stopped by cooling. Some of my hot flares are, many others are not. And women who have hot flashes in their feet from menopause would surely assume that cooling has an effect. I confess I tend to not take this as a diagnosis.

The last intriguing thing is that the early symptoms were in my hands. Not in my feet. And I may have heat waves in thighs and knees for instance, with both hands and feet cold... And that does't tally too much with EM. I just don't know and fear doctors might not either.

Anyway, thank you for your help.

3

Hi brm,

I just wanted to let you know that some of my flares are stopped by cooling and some of them are not, just as you said. Elevation does not always do it, as my face would not flare during the daytime, which it does.

Sometimes a walk can make me worse, sometimes it can settle down a flare quite a bit. There seems to be no hard and fast rules to EM for a lot of us.

I have read some people have 'classic textbook symptoms' but while I can have them, i can also have all other sorts of 'flaring' too. And a lot more often than 1.46 times a week. I can flare more than that in a 24 hour cycle - late evenings, nights and mornings are the usual, but not absolutely always, times for me.

Any area of my skin that I am putting pressure on while I am flaring will be redder, usually. I had a doctor once see those pressure spots and he said 'you've got urticaria' - unasked. I was not consulting him about my skin. So EM with urticaria. They seem to come together most of the time for me. Carrying a bag when I an flaring will cause deeper redness, while blanching where my Palm, fingers are holding the strap, all with swelling. Just like my feet can do when walking on them.

My skin can be red and burning, red and not burning, not red but still burning, far too cold, or almost blessedly normal, or what I now think of as normal. As, i just mentioned sometimes I can be red with no burning. So yes, pain, itchiness can be absent for me at times. At the moment various parts of my body are red and hot with slight warmness but my hands are red but feel fine, except my skin is dry. I can no longer wear rings on my fingers, some days they will fit, some days they won't. My earlobes can be problematic. If I wear earrings they are only the hook kinds that I can push in and out. I can't wear earrings with the back piece that holds the stem of an earring (eg stud earrings) in as often my earlobes will swell and go red and I can't get my fingers around the back of the studs to pull them off. Last time I wore my studs, i had a few in one ear. I woke during the night and my ears were extremely painful. I n the dark, still in bed, i took out the studs but while taking out the third one, which was one of those tiny stud earrings, i was pulling so hard to get the back bit off that I pulled the whole stud back through my ear. I didn't realize it at first, i woke in the dark and was removing my earrings, but when I felt the damp I got up and turned on the light to find that in my haste to stop the painful sensation with swelling and heat, I'd torn a hole in my ear and the whole earring in my hand was intact. The back of it was still attached to the stem. A real eye popping moment for me. My ears are often red with no pain or burning pain.

There seems to be no hard or fast rules despite some doctors thinking there are.

4

And the more I explain what I am dealing with, the more insane I sound. If I was someone else, I wouldn't believe me. Or I would think they were exaggerating.

Blue

5

1.46 flares a week would be good! I am usually flaring when I wake, burning without redness until I put my feet to the ground whereupon they turn red and I actively cool them on cold kitchen tiles without footwear. Then I can go all morning without a flare if I keep calm and cool. Housework will make me flare. I am talking only about Summer here. Winter is a whole other story. So in summer by mid afternoon even using the iPad makes my hands flare and I will have gone from strap sandals to flip flops to bare feet. I have head flares most evenings and they are the worst because they affect nose, ears and eyes. I have been trying to manage with half a 75mg aspirin but my flares are getting worse (more swelling, more head flares) so I am going back to a whole aspirin. I take my aspirin half an hour before bedtime for no particular reason. I also take clonazepam and cetirizine which help me sleep. Evening foot flares extend up to the tops of my legs if I don’t cool down by removing clothing and walking somewhere cool.
Elevating my hands brings the veins down but only while my hands are up. Likewise lying on my back with my feet up towards the ceiling brings the swelling and redness out of my feet and legs but only so long as I keep up the ridiculous position.
I too have Raynauds and EM and can be seen wearing flip flops and gloves even in summer.
I hope that all makes sense. Head flares make me muddle headed.

6

Sorry Tizzy, what do you mean?