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Understanding Fibromyalgia

An open letter to anyone who has a fibromyalgia patient in his or her life.

By Karen Lee Richards

If you are reading this, someone close to you lives with and suffers from fibromyalgia (FM).  Since FM is invisible, many find it hard to believe that it is a real illness or that anyone could really hurt that much all the time.  Unfortunately, this is one of the main reasons that fibromyalgia is so often misunderstood, misdiagnosed and not properly treated. 

Fibromyalgia is a central nervous system disorder that has three primary components: pain, fatigue and sleep problems.  (1) Pain – The pain may vary in intensity and location, but it is present most, if not all, of the time.  (2) Fatigue – The fatigue is not like the tiredness you might feel after working too hard or overdoing it on a sports field.  It's a pervasive, all-encompassing exhaustion – like someone pulled the plug on your energy source.  (3) Sleep – The person with FM usually has difficulty sleeping.  And even when they do finally sleep, they never reach that deep REM stage of sleep where the body refreshes and restores itself. 

The root cause of fibromyalgia remains a mystery, however, it is usually triggered by some kind of trauma to the body, such as an injury or illness.  In some cases, it can also be triggered by a severe emotional trauma.  Regardless the source, FM devastates the life it touches.  Unrelenting pain and fatigue reduces a person's ability to concentrate, perform daily tasks, work, socialize, exercise and sleep.  The more severe the symptoms, the more incapacitating it can be.  Fibromyalgia often leads to depression, isolation and loss of self-esteem.  Sadly, people whose FM is poorly controlled may also be at increased risk for suicide. 

There are four main things someone with fibromyalgia needs you to understand:

1.  What they are feeling and experiencing.

If you have a difficult time imagining what it must be like to live with the pain of fibromyalgia, I'd like to  challenge you to try an experiment.  Take a wooden clothespin – the kind with the spring that works by pinching one end together and clamping the other end to the clothesline – only instead of attaching it to a clothesline, clamp it to the end of one of your fingers.  Now go about your business and see how long you can leave it on.  While you still have the clothespin attached to your finger, try to imagine how it would feel if you knew you couldn't take it off when the pain got to be too much.  What would it be like to have that non-stop pain all over your body?  Now think about what it would feel like to have the flu at the same time – the kind of flu where every muscle in your body aches and it takes every ounce of energy you can muster just to drag yourself out of bed.  Finally, imagine that the pain and fatigue doesn't just continue for a day, or a week, or even a month, but goes on for year after year with little hope that it will end.  If you can imagine that, then you have a small inkling of what your loved one lives with each and every day. 

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