My heart…..a furnace!

Three or so years ago I have started noticing my index finger go white.  It happened after exposure to a sudden change in temperature.  I didn’t give it much thought at the time until all my fingers and at times the palms of my hand would change color.  This also happened to my feet (it was Summer and I wore sandals quite often).  This is called Reynaud’s phenomenon.  It was eventually linked to a thrombosis I developed a couple of months later (about which I will post later).

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Reynaud’s can be of primary nature having no unknown cause, or secondary to an auto immune disorder.  I now know it was due to my underlying Lupus.

During an attack, my fingers go white at first (this is called pallor) and numb to an extent that at times I cannot distinguish the key from the key chain in the pockets of my pants.  This is when the veins and arteries constrict depleting the tissues of oxygen.  This is the time when I open the nearest faucet and put them under running warm water, or grab a cup of tea, or just stick them below my armpits or crotch.  So, for those who have seen me do this,

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No, I’m not a pervert and you did not turn me on!

Later they change color to purple (cyanosis).

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The third stage, which is always seen only depending on the severity of the attack, is called rubor.  This is when the blood flows back and the fingers turn bright red.  It’s Christmas!!!!!NOT.  This means tingling, swelling and a lot of pins and needles and it’s often the time when I have to stop using my hands for some time.

Cold hands, warm heart.  🙂  My feet are most often protected and attacks are quite rare but when at work I have to be in short sleeves most of the time and I get attacks quite often.

Well, you might be asking yourself, isn’t’ there anything we can do about this?

  • First and foremost, treat the underlying cause.  SLE is not curable so we have to focus on the management of symptoms.
  • Use portable, reusable heat pack.
  • Buy yourself a couple or more good gloves ( I have now 10 different pairs made of wool, leather, goretex and mixes of).  Heated if need be.
  • Buy a good hot paraffin bath.
  • If your movement is limited, contact an occupational therapist.
  • Exercise…..as much as you can.  SLE impairs energy levels and when in pain I wouldn’t be really keen on exercise but this was one of the three New Year’s resolutions this year.  The second was that I should be working less and learn how to say, “Fuck off, I’m too busy for this.”
  • Drugs: Calcium channel blockers might help.  I tried two different ones (Nifedipine and Amlodipine).  I had to stop both as they made me dizzy.  To prevent thrombosis some are prescribed Aspirin – I’ll be discussing this during my next meeting with the Rheumatologist.  ACE inhibitors might decrease the severity of attacks.  I have lately been prescribed modified release pentoxifylline which did improve my condition slightly.  In 2009 there was apparently a study on the use of Botox for treating severe Reynaud’s and it was quite successful.
  • Surgery: In severe cases a sympathectomy can be performed to cut or damage the nerves that signal the blood vessels of the fingertips to constrict.  Well, unless I am in a state where I could possibly lose my fingers, I will not be undergoing this.
  • Avoid triggers:
  1. Exposure to the cold, keeping the core of the body warm
  2. Smoking (even passive, yes please, I would appreciate if you go smoke some fucking place else).
  3. Taking about triggers, the third resolution this year is about emotional triggers….and that is where I have another issue.  I have a bad temper and tend to get quite emotional about things I am passionate about.  I am slowly learning how to change this……but, nobody ever said it was easy!  I’m doing my best to control my temper and learning how not to give a fuck sometimes.  Then again, some triggers might be unexpected and catch you off guard.  I’ll post about an experience I had on the 23rd December, 2013 which triggered one of the worst episodes of Reynaud’s I have ever experienced, but not today.  I have to close here.  Better half and the cub are waiting for me to watch…..Despicable me!

Cold hands, warm heart
We just need some time apart
And everything will be okay
Oh no, not again
Why does it always happen?
It seems like every other day

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