Catch-22s and Drinking The Kool-Aid (Part 1)

I love mixing metaphors.  Don’t you?

Catch-22 ”

A situation in which a desired outcome or solution is impossible to attain because of a set of inherently illogical rules or conditions.

purple-ribbon

This pretty much sums up life with Fibromyalgia.

Fibromyalgia is a multi-sympton syndrome characterized by widespread pain (pain in all 4 quadrants of the body); 11 of 18 common tender points (mapped points that respond painfully to mild to moderate pressure); fatigue and cognitive dfficulties (memory or concentration problems);   exaggerated neurological response to painful stimuli;  elevated amounts of Substance P (the pain neurotransmitter) in Cerebral Spinal Fluid, and many others.

Sometimes, this makes life a living hell.

Imagine, upon awakening, your first conscious thought is that some part of your body (hips, neck, legs) hurts.  A LOT.  Now, try getting out of bed.  Overnight, all the muscles you used during the day, have stiffened up and are painful to move.  Yes, I mean all of them.  So, you start your day by convincing yourself that once you get up and moving, you’ll feel better.  And generally, the stiffness abates, but the pain may or may not.

You have breakfast and start taking your meds.  I take Lyrica twice a day and it helps…some.  It doesn’t take the pain away, but it makes it more manageable.  Without it, my pain levels are at a constant 8/10 (with 10 being reserved for broken bones and tooth abscesses).  Some days I add Skelaxin, a muscle relaxer, and frequently 800 mg of ibuprofen.  This brings my pain levels down to my normal cruising level of 5/10.  On a really good day, I’m at 4 or 3.  I have no memory of a daily constant pain level of less than 3.  Something always hurts, but I can manage it.

If the ibuprofen doesn’t bring me under 6.5, I reach for the oxycodone.  Frequently 2.5mg brings me into a manageable range.  Sometimes I take another 2.5.

The problem with taking more than 2.5 mg, is that it makes me drowsy.  Drowsy is not good.  Drowsy is not the way I want to live my life.  Some days I have no choice.

Then there’s other problem.  Fatigue.  My brain seems to be wired weirdly.  Sometimes I seem to get confused between fatigue and pain.I first realized this when I was living in Florida from 1998-2000. I was working at a job in a “sick” building.  While I was working there, they were re-doing their HVAC system, and all the ceilings were off in the hallways.  The mold exposure was fierce, and after an ear/sinus infection that led to a perforated eardrum (due to allergies), I quit the job, but was never the same.  When I’d get home from work, I’d be completely exhausted.  And my shoulders hurt.  After a couple of ibuprofen, not only would the pain go away, but I would perk up.

Now, 15 years later, when I’m in severe pain, I seem to translate it to fatigue.  Tim knows  this and, if I’m really dragging, he’ll suggest pain meds.  Invariably, within 20-45 minutes, I perk right up.

Some say that pain is draining, and saps energy.  But I discussed this with my rheumatologist, and she agrees.  There seems to be something in the way Fibro patients are wired that confuses these two signals.

Now here’s the Catch-22 (you knew I’d get back here).  Pain begets pain.  There’s a neurotransmitter called Substance P.  Without a lot of information on neurochemistry, let’s say that Substance P is the means with which the Central Nervous System (CNS) sends pain stimuli from one nerve cell to the other.  Stress or injury signals the production of Substance P.  An elevated amount of Substance P in the cerebral-spinal fluid, signals the nerve cells to produce even more pain receptors which, in turn, send higher pain signals to the brain to produce more Substance P.

Some medical circles believe that this is the root of Fibromyalgia, and a lot of the research going on these days is focused on this.

But what does this mean for me?  It means that more pain I’m in, the more pain I’m in.  It means that in order to stop a flare-up, I need to properly manage the pain.  If this means opiates, then so be it.  I hate it.  But I do it.  Crazy oxycodone induced dreams and all.  If I don’t get the pain managed, the flare-up spins out of control, until I have to take action.  I’ve learned that early intervention is key to pain management.  No pain=no pain.

Unfortunately, here’s where we come to another Catch-22.  Pain and stiffness can be alleviated by mild to moderate exercise.  However, cross the line and overdo it, and you can send yourself into a flare-up.

This is one I’ve been grappling with for 15 years.  How do I know when I’ve overdone it? Not until it’s too late.  Since the pain doesn’t set in for a few hours, I feel fine when I’m doing something.  Take yesterday’s yard work.  I spent an hour and a half cleaning out a flower bed.  This was about 1:00pm  At 6:00pm, I felt tired.  By 9:00pm I was in whimpering agony.  Today, I’m stiff and sore, and medicated.

My pre-Fibro self, would either do some light work today, and get back in the garden tomorrow.  I know, from my bodybuilder days, that is the way to build muscle and get stronger.  I know from my distance cycling days, that’s how to build endurance (train every other day).  So, I’m taking today off.  But what about tomorrow.  I know, from previous experience, that I’m going to hurt tomorrow too.  Do I push through it and do another flower bed?  Do I take a second day off?  What if it rains on day 3 & 4?  Then I’m not back in the garden until Monday.  After 5 days off, I’m as good as starting from scratch again.  No one has been able to give me an answer to this question.  Not my doctor, not physical therapists.  They just don’t know.

One source says that people with Fibro should exercise at 50% of their capacity.  And just how do I know what 50% is?  How do I know when I get there?  No one seems to be able to answer that question either.

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1 comment to Catch-22s and Drinking The Kool-Aid (Part 1)

  • Sorry to hear about this. Sounds miserable. Hope you find the right combination of activities and meds to keep you as comfy as possible. A new kitten might help.