The History of Fibromyalgia, for Kitty: A One Woman Saga

Looking back over the years and trying to pinpoint where the fibromyalgia began takes me back all the way to high school.  I had Osgood Schlatter’s disease , where the bones in the legs grow at different rates and it hurts like hell.  I’d have been about 15 years old.  My mother said that I was more accurate than the local meteorologists, always knowing when the weather was changing.  Physical exertion (re: PE class) just made the knees worse so I got a doctor’s note excusing me from the class for the last two years of high school.

I enlisted in the USAF and will confess here and now that I NEVER met the physical tests, never ran the mile and a half, barely did the sit ups.  I was allowed to slide, so I did all four years of my enlistment…and there was pain.  When I look back over all those years, all that time between now and then, it seems like there has always been pain.

At least it wasn’t as debilitating as it is now.  I received my honorable discharge and went to work at the local department store.  The standing tired me out and made me hurt…so that didn’t last very long.  Then I was doing home help for the elderly.  Stopped doing that to have a baby…my son was born in 86 and I became a stay at home mom.  I didn’t realize it, but I was already making accommodations even then–do some of the dishes, sit down for a while.  Vacuum a couple of rooms, take a break.  Take some aspirin when it hurt too much, still predicted the weather better than the news.

We moved to Germany in 87.  My (then) husband was looking forward to a “real” winter after 7 years in the Southwest US.  Joke was on him; Germany  had 4 of the mildest winters on record the 4 years we were there.  But there was still cold and I’d stiffen up and hurt.  I was also having cramps with my period, which I ascribed to having had a child, since I had not had that particular issue prior to childbirth.  We lived on the 4th floor and that was a serious climb for me.  I also did not drive (we only had one vehicle) but I could walk to the commissary or the local grocery store, pushing the stroller AND pulling the grocery cart.  There was a crosswalk over the street between the stores and our apartment and I’m not sure how I managed to get one, let alone two, wheeled and heavy carts up the first 3 flights of steps and then down the remaining 3 flights.  But I did, and always in carefully broken down parts, with a lot of rest.

I was told (and sort of believed) that I was merely out of shape, that I needed to do MORE, instead of resting so much.  But there was pain, increasing amounts of it, which led to increasing amounts of OTC pain killers.

My daughter was born in 88.  My poor son, just barely 2 years old, learned how to walk up ALL those steps we had because I simply could not carry him.  And my cleaning regimen slowed down as I would work a little, rest a little.  I had no idea that’s what was going on at that time, but looking back…well, hindsight is always 20/20.

We moved back to the States in 91.  We ended up in Rochester, NY, living 3 miles from Lake Ontario.  The three foulest, most obscene words in the human language are “lake effect snow”.  We got an average of 99 inches EACH year.  There was a sidewalk PLOW.  (Two words that should not go together: sidewalk and plow)  The weather was cold and when it wasn’t cold, it was cloudy.  Rochester only gets about 100 days of sunshine a year.  And I not only continued to be an excellent barometer, I improved at it.

I went to a respected rheumatologist, with the complaint that the pain exceeded aspirin and hot baths.  He did blood tests, manipulated my knee caps (to the point where I could hardly walk when he was done) and his end results?  His professional diagnosis?  That I had pain in my knees and should take aspirins and hot baths.  WTF?????

The pain increased and was seldom not present.  My primary care physician pointed me to naproxen sodium so that I wasn’t taking the massive amounts of aspirin I had attained.  My housecleaning ratios changed to being more rest than work, so it took longer to clean house.  I also added GERD (Gastro-Esophageal Reflux Disease) to my increasing medical folder.  I think this is the point where the migraines began to occur.  Not often, but completely debilitating when they did show up.

I went back to work in 96-97.  I became a nursing aide, helping take care of the little old people in a nursing home.  The work itself was rewarding, but very physical–so more Alleve (Naproxen Sodium) more often became standard.  Then I  moved to VA in 2000.  The first year and a half are pretty much a blur for me, with some specific memories.  I moved in with a friend and her significant other–and a houseful of children: hers, his, and eventually, mine.  Chaos and generally not a good scene led to my moving out (with my children of course) in the spring of 2002.  I was back to being a nursing aide after a stint in factory work (where I walked about 5 miles a night; if there was ever a time when I was “fit”, I think this would have been it–and there was still pain).

Started back to school to learn computer stuff, so for a while there it was a 40-45 hour work week, and class 12 hours a week, 4 hours x 3 nights.  And of course, still having teenagers in the house to care for.  Changed jobs from nursing to being a CSR in a call center.  I have no idea how I managed to do that for almost 2 years.  Or however long it was…like I said, no real clear memory of that time.

Got a job in DC, then moved to their office in Tyson’s, then back to DC and finally did the math and determined a 13 hour day was beyond my ability or desire to do…went back to working in the call center.

The eternal pain followed me everywhere, and began to extend beyond my knees, hips and legs.  I got wrist splints to support my hands because they began to hurt.  I remember sitting and talking with a friend when this awful lightning of pain went down my leg (my first noted experience with neuropathy, although not my last).  IBS (Irritable Bowel Syndrome) decided to show up during that time as well–it’s hard to run for the bathroom when your legs are stiff and hurt, but if you don’t….ewwwww.  I began to have periods of what I referred to as “riding the rollercoaster”, where everything would spin around me.  I was very grateful that it did not occur when I was driving.

I began to get clumsy and forgetful.  And any exertion required a period of resting.  And I didn’t really notice it, or keep track of it because it was insidious, slow and creeping into my life.  And always, always, the pain.  More pain.  I was up to taking about 6-8 Alleve a day (and all the doctors who are reading this are cringing).

And somewhere in here, I met my Beloved.  And for the first time in my life, I had someone who was paying attention to my health, who observed the various episodes and identified that there was a problem.  He insisted I see his doctor…who made the diagnosis of fibromyalgia.  And we began various drug therapies, trying to find the one that would let me live a life free of pain.

My first husband was healthy and did not have the medical knowledge or awareness that my Beloved has because of his own health issues.  So my first husband did not see my problems as anything more than a lack of fitness or my own laziness.  My children grew up with me like that, so they didn’t see the gradual decrease and like their father, didn’t have the medical knowledge to point out that I was getting worse.

Until I met my Beloved (aka “The Last Husband”), I HAD to keep going, had to keep on doing the things I had been doing, regardless of the cost of it to my health.  As he says, I was just doing the “keep on swimming, keep on swimming, swimming, swimming”…and when I was finally with him, I could stop swimming and come out on the beach, where my health (or lack thereof) was glaringly apparent.  I had someone I could lean on and rest, instead of being the one responsible for everyone else and unable to “stop swimming”.

And so it looked like I went from being healthy to being this wreck that I currently am…but that’s not true.  I have had a steady and persistent decline for the past 30 years (or more).  It was slow at first, but by the time both kids had left home, it was increasing in speed and severity.  And since I didn’t have to keep making the effort to seem healthy, in these past 3 years, I have watched it go fast enough that I hope we’ve hit rock bottom.  I mean, I can hardly move.  My house is filthy because I can’t clean it.  Going out to run simple errands requires a mustering of strength and effort which frequently leaves me so exhausted that I nap immediately upon return home.  I have problems swallowing sometimes–and that freaks me out.  And I get leg twitches that make a dog’s dreams look like nothing.  In fact, I get a sort of palsy or shaking all over, almost like a seizure and that makes me frantic.  Fortunately that doesn’t happen all that often.

I am currently on 3 pain meds: 10 mg Vicodin, tramadol, and neurontin; I take Lyrica and Cymbalta specifically for the fibro.  I take Excedrin for the headaches and I can add Alleve if the general pain levels are bad enough to give it one more thing to deal with pain.  I sleep a lot.  We are going to the pool when the weather permits, and that makes a difference for both of us.  Beloved is regaining muscle tone and me, I’m floating in a zero gravity pool that removes all the pain pressure points and is the least painful I ever am.  I’d spend all day in the pool if I could.  A little hard to go places, but hey….it helps with the pain!

Organic, chemical-free food seems to help.  The homemade, chemical-free cleaning products seem to help.  We are both hoping that our move to Eureka will indeed be the salvation we are hoping for.  If not, at least I can add marijuana to my pain regimen.  I already have this choice: no pills and pain, inability to do anything OR take my pills which make me higher than a kite and still have no ability to do anything…but at least it doesn’t hurt so bad.

There is no way to describe the pain a person with fibromyalgia feels.  Only someone else with it can know and understand.  It is a constant companion, from a mild level up to “just kill me now because I’ll feel better dead” level.  It never goes away, it never stops letting you know that it’s there, it interferes with everything–not just the bad stuff, but it’s there during what’s supposed to be a good time.  It colors everything you do, everything you plan.  Even with medication, you KNOW it will come back and sometimes, hurt all the more for having been subdued with that medication.  It destroys your life; it affects every relationship you have and might have.  It makes you feel ashamed for not being able to do things that you need to, or want to.

I think every person with fibro should get this as a bumper sticker:  “When I die, I’m going to Heaven because I’ve already had Fibromyalgia”.

So here I am, and there we are.  It is what it is, but what it is…is hard to explain meaningfully to another person.  I have tried.  I hope it’s a start to you understanding what it’s like.

Namaste!

UPDATE:

Went to the VA doctor, who took me off the Vicodin because I’m so obviously an addict who is trying to get enough to sell it on the street corner.  And he tripled the nuerontin, removed me from the Rytalin and while I have a script for Cymbalta, I can’t afford it, so…I tapered and have come completely off of it.  I am still on Clonipine for anxiety and Lisinapril and Lasix for high blood pressure and swelling in my feet and legs.  I feel more alert but am more clumsy; helluva trade off.  Go to see the VA head shrinker in August and the Rheumatologist in September.  Back to the PCP in October, when I can kiss him good bye, since I already have the address for the VA in Eureka.  Oh, and I FINALLY got my LTD claim approved and some money coming in, thank the Maker!

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