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Tuesday, October 9, 2012

Living With Fibromyalgia

Fibro...What?  How Do You Even Spell That?
So little is known about Fibromyalgia, that the general public doesn't even know how to spell the name of this condition.  Specialists themselves are not quite sure what it is either.  Presently, there are no tests that specifically detect the condition.  So how does it even get diagnosed?  Literally, by the process of elimination.  Specialists try to test you for any and everything from Lupus and Multiple Sclerosis (MS) to Rheumatoid Arthritis (RA).  Through batteries of labs, X-Rays and MRIs, doctors eliminate diseases until there is nothing else left to test for.  Then, you get diagnosed with Fibromyalgia.  Not too reassuring is it?

According to WebMD, Fibromyalgia is a chronic condition which affects about 5.8 million Americans.  The syndrome affects muscles and soft tissue and symptoms may include:
  • Chronic muscle pain, muscle spasms or tightness
  • Moderate or severe fatigue and decreased energy
  • Insomnia or waking up feeling just as tired as when you went to sleep
  • Stiffness upon waking or after staying in one position for too long
  • Difficulty remembering, concentrating, and performing simple mental tasks ("fibro fog")
  • Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
  • Tension or migraine headaches
  • Jaw and facial tenderness
  • Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
  • Feeling anxious or depressed
  • Numbness or tingling in the face, arms, hands, legs, or feet
  • Increase in urinary urgency or frequency (irritable bladder)
  • Reduced tolerance for exercise and muscle pain after exercise
  • A feeling of swelling (without actual swelling) in the hands and feet
In my case, everything hurts, everywhere and all of the time.  The VA Clinic Rheumatologists and Neurologists both agree I may be one of the most severe cases they have seen.  Not to mention the youngest.  Which raises a whole other set of considerations.  My symptoms include:

  • Joint pain and discomfort and decreased range of motion
    • All joints in my body ache.  
      • Finger knuckles ache making hands feel arthritic.  
      • Pain in wrists reminiscent of that of Carpal Tunnel Syndrome.
      • Elbows at times "lock" along with elevated pain levels.
      • Hip joints pain is aggravated with increased motion.
      • Knees at times "lock" along with increased pain levels are worsened with increased activity.
      • Ankle pains reminiscent of "rolled ankles" increase with longer walking distances. 
  • Chronic muscle pain, muscle spasms, tightness and weakness  
    • Back and neck pains runs down  the entire length of the spine.  Burning, throbbing and stabbing pain worsened by activity levels and pressure.  I am unable to sleep on my back because of the burning sensation.  
    • Muscle spasms on neck and trapezoids are severe and pronounced.  They are aggravated by stress and activity levels.
    • Tightness and weakness of muscles cause need for walking cane for stabilization and support for short distances and wheelchair or scooter for long distances.
  • Moderate to severe fatigue and decreased energy
    • Exhaustion levels are worsened by activity levels.  It is worse in the mornings and gets slightly better towards the end of the day.
  • Insomnia or waking up feeling just as tired as when you went to sleep
    • Although I may be tired, aches and pains combined with the inability to "shut down" my brain keep my up until well past midnight on a daily basis.
  • Stiffness upon waking or after staying in one position for too long
    • Which conflicts with your body telling you you shouldn't be moving because activity worsens pain. 
  • Difficulty remembering, concentrating, and performing simple mental tasks ("fibro fog")
    • I find myself asking people to repeat themselves, completely skip over some of the things people say and have an even shorter short-term memory than usual.
  • Tension or migraine headaches
    • Begins with pressure behind the eyes. 
  • Sensitivity to bright lights and medications
    • Light sensitivity worsens eye pressure and pain levels.
    • Aversion to certain pain medication causes drastic increases in fatigue levels as well as nausea, vertigo, cold sweats and the shakes.
  • Moments of irritability and short temper
    • After all, who can be in a good mood 24/7 when in this much annoying pain?  I would not consider myself depressed as I have plenty of joy, blessings and beauty surrounding me every day.  However, I am only human and there are times when the pain is a bit too much to handle.  The wondering if there ever is an end to the pain in sight can hit you hard at times.  Anyone would be upset once in a while about being in that situation so it surely does not warrant a Depression diagnosis.
  • Numbness and tingling with pain in the arms, hands, legs and feet
    • Makes it very uncomfortable to type and use touchscreen electronics.
  • Reduced tolerance for exercise and muscle pain after exercise
  • A feeling of swelling (without actual swelling) in the hands and feet

Now, anyone can go online and look up a list of symptoms to try to understand what is either going on with their bodies or what is going on with their loved ones.  The honest truth is that all cases are different.  Some people may have some symptoms and not others.  Severity levels vary and may be aggravated by different factors and activities.

I can imagine that just like myself, other Fibromyalgia patients have days on which they struggle with coping with this condition.

At this time, I am a 34 year old Marine veteran.  I have lead a life full of athletic performances and perhaps a few adrenaline junkie situations.  Never in my wildest dreams would I had imagined hitting this brick wall.

Fibromyalgia brought me to a full stop.  No more running daily, no more hundreds of crunches, no more soccer, rollerblading or even walking unassisted.  The active lifestyle of the former JV and Varsity high school soccer team captain, college scrimmage pick-up soccer game player and U.S. Marine Corps squad leader was over.  It took a lot not to let the situation escalate out of control.  Had it not been for Christianity and my supportive and loving wife and my wonderful child, I know I would not be where I am today.

It is quite easy to see how some Fibromyalgia patients dive head-first into depression.  I mean, think about it.  With this condition, you are damned if you do, and you are damned if you  don't.  If you choose to rest, you are in pain.  If you choose to move about, you are still in pain and risk being in even more pain.  Your best bet is to try and shoot for the middle, all the while wondering if it is ever going to get better, easier or less painful.  It is better to be in pain and being proud of having achieved something or having gone somewhere, than to be in pain bedridden and depressed.  So get up and do something.  You are going to be in pain anyways.  Why not enjoy yourself while you still can?  Chances are you might get an hour or two of enjoyment, if you are lucky, before you have to be carried off in a stretcher.

You ache all of the time, no matter what you do or what you take.  Such is my state that I no longer care if I get hurt since pain is as constant as breathing.  I would probably be the worst torture subject as the fear of future pain is long gone.  What's a little more pain? Bring it!  So go figure, living with fibromyalgia, despite slowing me down actually helped me become fearless.  

My advise to those suffering form this condition is to live for the small victories.  One thing at a time and take your sweet time.