Thursday, July 03, 2014

Changes in Health

I didn't feel up to blogging about it while in the thick of things, but now I'm getting a handle on the health roller-coaster we've been riding...

A year ago spring I got one of those "flu-like viruses" with the usual body pain, chills, fever, and respiratory problems.  Instead of fighting it off, the symptoms lingered for two months.  I was treated with a slew of medications and eventually the symptoms dwindled.  A few months later, as the end of summer, it happened again.  After a month more of the "flu-like symptoms" I woke up one day in severe pain, with trouble walking upright.  Weeks later the pain persisted and the fatigue worsened.  By December, my body was experiencing the full spectrum of pains possible: from sharp stabbing, to dull lingering, random cramping, even wind or water on the skin or anything slightly warm or cool hurt.  I was slow to move in the morning, and fatigued by early afternoon.

The initial diagnosis due to the pain and fatigue was Fibromyalgia and Chronic Fatigue Syndrome, kind of two sides of the same coin, both poorly understood and chronic.  I was waking every day (from a drug-induced slumber) to a wash of pain, and worried that living this way would re-trigger the major depression I experienced a few years ago.  But, amazingly, the start of 2014 has been one of my most productive and happy times!

I've been journaling with a fury, and the brain has offset
the rest of the body with incredible ideas and dreams.
Sure, some days are cloudy, but the highs are really high.

Mark and I have been kicking butt at work and home,
he's been a rock on days when I've had trouble getting dressed
or too lethargic to do anything.  Other nonsense melts away.

Of course the boys have been very important too,
Its worth making the effort to walk or lean over, when
something this plush is waiting for you (he's not).

And things have changed in my diagnosis.  My doctor, probably in a fit of desperation at having to see me every month, tried a short course of Prednisone (corticosteroid anti-inflammatory drugs) at high dose (60 mg for three days, 40 mg for three days, and 20 mg for three days).  This treatment should not do much for fibromyalgia or chronic fatigue, but within 24 hours I was walking and breathing better, and the pain had dropped significantly.  For the nine days, it was like having my old body back, but within a day off of the medication, the fatigue and pain hit me like a ton of bricks. 

So the new tentative diagnosis is the uncommon (at my age) inflammatory disorder Polymyalgia Rheumatica.  The bad news is that the only treatment option may be staying on steroids for a year or more, the good news is that the body may heal in that time.  I was in quite a bit of pain the week before our Vegas trip and worried about getting around and long buffet lines.  I was back on steroids two days before we left (10 mg daily in the morning) and we walked everywhere we could, swam, and partied, it was amazing!  Since I was sedentary for months, there is a lot of muscle rebuilding to do.  This week I'm shuffling on the trails with Mark & Tanji, dreaming of doing a 5K run in December.  The pain and fatigue are still there, but many things seem possible again.

If any chronic pain or fatigue people run across the blog, I get it, you are rock stars and I'm sending happy thoughts your way every day.

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