Icy...

One of the symptoms that I have that I do not yet have any help is icy skin.  I wish I understood better, but it has to do with the vascular function not working properly.  Your vessels dilate to bring more blood to warm your skin.  It's another autonomic function that is not working properly.

For years, I have worn baggy clothes to hide my body because of my shame.  Now, I wear long sleeves and long skirts or pants because I need cloth against my skin ... sort of as a substitute "skin."  This is because of how miserable that I can get when air touches my skin when it is cold.

The air causes waves upon waves of chills to wash over me.  Each wave makes me colder, my skin icier.  It is a terrible problem when I crawl into bed.  I have to be so very careful to keep any part of my skin from touching any other part, such as my legs.  Icy skin touching icy skin is unbearable and makes me start shivering uncontrollably.

When I am in bed, even air beneath the covers can cause great trouble for me.  Once in bed, then, I work to push out all the air beneath the covers and tuck the edges of my covers beneath the side of my body.  Since I get up every two hours or so for fresh ice packs, trying to keep myself warm is a great battle I fight much of the year.  For that reason alone, I will miss the gargantuan amount of STINKIN' HOT SWELTERING days we had this summer.  Now that the temperature has dropped, the battle has once again begun.

My beloved amlodipine also seems to have lost its mojo.  I can no longer touch things in the freezer without my fingers burning in great agony.  I wish I understood the process better.  Why is it that cooler temperatures outdoors (and inside) causes the Reynaud's to worsen?  I already have transitioned to the heaviest weight of my wool sock collection for my beleaguered blocks of ice at the end of my legs.  Thankfully, it only took me two nights to remember that I have a foot warmer for my bed!

It is hard to deal with my skin when it is warm, because wearing long sleeves and skirts/pants in warm weather can cause me to overheat.  And, yet if I do not, I am miserable in the opposite direction.

Then, to add insult to injury, there is the symptom of temperature dysregulation.  This means that my body temperature can drop rather low, chilling me from the inside out.  Or I can react to a relatively lower temperature as if it were wildly higher.  For example, I start getting sweaty and shaky and weak once the temperature inside reaches 72.

The funny thing is that I have always been happy in colder weather, usually going out in the dead of winter with just a scarf and gloves ... no coat necessary.  Now, I have started to become sensitive to the cold in a way that I never have been.  I think it might because of my age.

Is that weird to say?  I pass 50 just a year ago and all sorts of changes in my body seem to be cropping up.  I think I have not been kind enough to my sister and mother about their getting colder as they got older.  And, for that matter, I struggle with how my dearest friend freezes every time she visits me ... to the point of wearing coats and hats and scarves indoors, as well as bundling up in blankets.

I sweat.
She freezes.

SIGH.

Anyway, I have asked my cardiologist about my icy skin, but we have never settled on that topic during my appointments.  I asked my GP this past appointment if she had any ideas.  She promptly got on her computer and looked up the problem.  I love that she does research right there with me.

One answer is drugs that cause flushing.  One of them in calcium channel blockers, which is what amlodipine is.  Out of the list, the option she thought might work is niacin.  What you get over the counter is a non-flushing version.  So, I would need a prescription.  But she didn't sent the prescription for filling because of the pacemaker appointment that I have.  She wants to get the programming issue (if that is the problem) worked out before I try a medication that can affect my blood pressure and heart rate ... and cause pre-syncope and syncope.

Yep.
Another thing that could make me faint.

Why take it then?  Because having icy skin makes my life wretchedly miserable.   I don't know if anyone who does not live with chronic illness, particularly autonomic and autoimmune, can understand what one can be willing to put up with