#16 - Defining Pain

The Inuit (Eskimoes) have many words for snowflakes.

They live with snow. The white stuff is such an integral part of their lives that they have words to define the variations of snow.

Those of us with lupus develop quite a vocabulary to define pain.

I was reminded of this when I finally woke up this morning.

I woke up with "tinfoil on fillings" pain.

The "I can't open my eyes or the light will make my head explode" pain.

The "God, please let me just go back to sleep until it is over" pain.

Montel Williams (who has MS) described his pain experiences as "chasing the pain".

On days like today... that is EXACTLY what I am doing. I will do anything within reason to make the pain subside.

Yes, it is that bad.

I had 11 medications this mornig. That is actually less than the prescribed doses that I am allowed on days like this.

I am afraid of building up a tolerance to my pain medications.

After you have been on pain meds for as long as I have... you develop a tolerance which means you actually need more medication to get the same pain relief that a lesser dose could accomplish a year or two ago.

So I dole out my pain meds cautiously.

Which means I am never pain free.

I take enough to be able to sit upright and open my eyes.

Today I slept in which was a mistake.

I thought if I could sleep through the pain I would get some relief.

The trouble is that I delayed taking the pain medications earlier in the pain cycle.

When you wait too long, the pain meds are not as effective.

It feels like the nerve endings have been rubbed so raw from the piercing pain that they are now way too sensitive to respond well to the pain meds.

Today is especially troubling because there has been a screw up with my migraine medications.

My doctor's office did not get the original refill request from a few days ago. So I called again yesterday, and have yet to talk to a human being. As far as I know the script has not been refilled and I do not have enough medication to get through the night if this does not subside.

I am having one of those pain days that can slam someone with lupus into the emergency room.

Yep.

It is that bad.

Darn it.

So what do you do when the pain is so bad that it has gotten intolerable?

If it is a new symptom, you call your doctor immediately and get checked out.

We run a high risk of strokes (sharp head pain) and so much miscellany that if you have lupus, you should never fool around with the "wait and see" formula when you are unsure of what is going on.

Today's pain is an old script that I have been through too many times to count.

I would love to take a hot bath and soak the muscle pain away. But, I am too weak for that right now and the heat actually makes me worse.

I could lay in bed with cold compresses, but laying down right now makes my head worse.

I could meditate, but sitting still and being quiet only makes me focus more on the pain.

So I use a technique that has always worked well for me.

DISTRACTION.

So I am writing.

I have to use so much concerntration to write that the pain becomes background noise.

Video games work the same for me.

There was a recent preliminary study regarding painful procedures and children. They used video games to distract the child during the procedure... and TADA! Decreased pain on all accounts.


Pretty neat...eh?

That is the power of the mind.

If you can channel your energy into something, your mind has to click off the pain sensors to push the energy in another direction.

So this is a pain entry.

Not so much for anyone's reading pleasure (I mean there's nothing pleasant about this!)... just a feeble effort to push the pain into background noise.

Pain is still here right now, but writing this entry has just given me thirty minutes of thinking about something else besides pain.

Another great diversion?

LAUGHTER!

This is tough when you have lupus.

Many of us struggle with depression and deep, deep fatigue.

I do.

And I know from this experience that spontaneous laughter can be a rarity.

But, trying to find something that strikes your funny bone does help.

When I am like this and I find a belly laugh... I will laugh so hard that I cry. The emotional and physical release is such a profound relief, I don't care if it is laughter or crying... just anything to release the pain.

Here's a new one that I have been trying.

Look at anything CUTE.

I am not kidding.

Another recent preliminary study is showing that cuteness releases endorphins (feel good chemicals in the brain). The same good stuff that pops into our brain with sex.

Imagine that.

So if any of you are doing the pain shuffle today think on these things:

1. Distraction
2. Laughter
3. Cute

Good luck!


RESOURCES:

DISTRACTION

"Using Video Games to Manage Pain", NPR (Synopsis and Audio link): http://www.npr.org/templates/story/story.php?storyId=4865321

LAUGHTER

"Laughter as Medicine for Chronic Pain and Back Injury "

http://backandneck.about.com/od/medication/a/laughter.htm


CUTE

Unfortuantely, I can not find the original material about cuteness and endorphins. I saw this on a news broadcast and can not remember the source.
"The Cute Factor", New York Times: http://www.nytimes.com/2006/01/03/science/03cute.html?pagewanted=1&ei=5090&en=9942fdaf51f1211c&ex=1293944400&partner=rssuserland&emc=rss