Thursday, May 12, 2011

National Fibromyalgia Awareness Day

I could write a book on fibromyalgia and how it has affected me, but I am going to keep this as short as possible and split it into two parts.  The first post will tell you what fibromyalgia is and what we with the disease encounter in the medical profession as a general rule.

In the second post, I will tell you about my own experience with fibromyalgia.


Here is fibromyalgia in a nutshell:

The pain is chronic in nature, meaning three months or more, it is located in multiple areas.  It may be in one place or it may move around.  Or both.  The intensity of the pain varies from day to day and is difficult to describe, but some descriptions of the pain are that it is aching, deep, shooting, radiating, tender, pins and needles.  Ask a person with fibro to describe his or her pain and you are likely to get a somewhat blank look while the person struggles for words, because the pain of fibromyalgia generally defies any words in the English language.

A really good quote I found is, “Sometimes you can feel like a prisoner in your own body.”  (Author Unknown)

Fibromyalgia is one of the most common types of pain conditions and affects over 5 million patients just in the United States.  The defining characteristics of fibromyalgia are chronic widespread muscle pain and tenderness.  It can occur as a primary condition or secondary to an injury and it lasts for the rest of your life.  It is misunderstood and the symptoms are often unrecognized or misinterpreted, causing the patient to remain undiagnosed and be treated improperly, often for years, before some knowledgeable and sympathetic doctor or rheumatologist finally figures it out and starts working with you to treat the correct illness.  90% of fibro patients suffer from severe fatigue and/or a sleep disorder.

Fibromyalgia is associated with some or all of these additional symptoms and syndromes (in addition to sleep problems) that seem like separate conditions, but are, in actuality, part and parcel of the fibro diagnosis:

Headaches, irritable bladder or bowel, memory problems, temporomandibular joint disorder, pelvic pain, noise sensitivity, temperature sensitivity, restless leg syndrome, depression, and anxiety.

Psychological aspects are a part of fibromyalgia, which makes perfect sense.  If you were in chronic pain, wouldn’t you probably be depressed and anxious?  At least some of the time?  When something hurts and you can’t make it stop, it gets very easy to become negative, which doesn’t help you in your relationships.  People get tired of you complaining that you are in pain, so you try to stop ever telling anyone it hurts.  When someone says, “How are you?” they really don’t want the true answer.  It’s a rhetorical question.  So you work really hard at appearing normal, even though inside you are crying.

Fibromyalgia manifests differently in every patient who has it.  There is no definitive diagnosis, no diagnostic test that will evoke a positive result like a blood test or an x-ray.  Fibro is diagnosed based solely on symptoms that are presented, which is why it takes so long for doctors to figure it out.  The test is quite simple – you must show positive pain response on 11 out of 18 “trigger points” on your body.  If you hit 11 or more and everything else has been ruled out, it’s probably fibromyalgia.  They think.  For a very long time, it was considered a “woman’s” disease (because 70% of sufferers are women) and probably all in our heads.  But…then they started doing some research and discovered that actually, it isn’t all in our heads.  New evidence shows that fibromyalgia is the result of overactive nerves in the fascia, the connective tissue that surrounds every muscle in the body.  Think of how many nerve endings you have in your hands or fingers and how much it hurts when you injure them.  Then multiply that by about a thousand times and put it into every muscle in your body.  That’s fibro.

Imagine being in unrelenting pain.  Think about the worst injury you have ever had or and what you were feeling when you sustained the injury.  Then imagine that your injury decided not to heal.  It wouldn’t go away.  Now, you never know if you’re going to wake up and have your pain or if you’re going to wake up and be kind of okay, even though you still know your pain is there.  Watch out for weather changes.

Now imagine that whenever this pain hits, you must grin and bear it, because no one is willing to give you anything to make it go away.  No one believes that you are in pain because no one can see the injury and it doesn't show up on any test.  You go to doctor after doctor, trying to get relief from this pain and every doctor you see says, “I’m sorry, but I can’t find anything wrong with you.  Therefore, it’s a chronic condition and you’re going to have to live with it.  Try exercise.”  When you protest, “But, I can’t move when I have this pain.  I can’t sleep, I can’t concentrate.  All I can think about is how much it hurts,” the doctor says, “I’m sorry, but if you’re looking for narcotics, you can forget it.”

Welcome to the world of fibromyalgia.  A disease that is difficult to diagnose and even more difficult to manage.  You are labeled a hypochondriac because no one can find anything wrong with you on any objective test.  All of the information you are providing is subjective and they are not in your head, with you in your pain, so there is no urgency to help you be out of pain. 

If you find a doctor who (a) believes you are in pain, and (b) is willing to work with you to treat your chronic pain (i.e. give pain relieving drugs), you find yourself not only watching as the number of pills you have getting less with every dose you take, but worrying that when you need a refill, the doctor will be out of town.  Or it’s the weekend.  Or the pharmacy won’t have your prescription.  Or that the insurance company will not refill it, for whatever reason they have.  Your behavior starts to look an awful lot like a drug addict’s and family members start to ask you if you might have a problem.

Yes, I have a problem!”  You try to explain this to your family and friends over and over again.  It’s not a drug problem.  It’s a pain problem.  It’s a problem that the drugs might not be available to treat the pain and make it go away for four hours.  If you knew that in three hours, your pain was going to start to come back, wouldn’t you be doing everything in your power to make sure that didn’t happen?  Yes, we get concerned when our drug supply is running low.  Because when the drugs run out, the pain is not bearable.

People with fibromyalgia only want to live normal lives.  We do not get high from our drugs.  We get pain relief, often with side effects.  We have to balance how much relief we must have against the side effects of the drugs that are prescribed.  It’s like walking a tightrope, really.

Fibromyalgia is not a fatal disease and for that I am grateful.  But some days, you kind of wish it was because the pain is so bad.  You know that you will have pain for the rest of your life, barring a miracle cure, and facing down those long years of chronic pain is sometimes more than I personally am able to handle.  Fibro patients learn to take it day by day and sometimes minute by minute and yes, we are watching the clock, waiting for the next dose of medication, because we know that after about two or three hours, the pain will be back and it will be all we can think about.  No wonder we have trouble sleeping.  Pain meds generally last about 2-3 hours.  If the pain comes back, you wake up, right?  And it’s really hard to get into some good REM sleep when the pain is poking away at your subconscious.

Stephen King described Paul Sheldon’s pain from his fractured legs and pelvis in Misery as a piling that was sometimes covered by the high tide (when he had just gotten pain medication) and sometimes uncovered and blaringly obvious and all he could think about (when the medication wore off).  When the piling was all the way visible, Sheldon would begin to get desperate for relief.  The measures he went to in order to make sure he had enough of his pain medication really struck a chord with me.  It was the most apt description I have ever heard of what it’s like to have chronic pain and need pain medication.  Sometimes the piling is covered by the water and I am good to go.  But after a couple of hours, I have this warning bell going off in the back of my mind that becomes louder and louder, knowing the time limitations on the medicine, and I am watching the clock, counting down to the next dosage of medication, whether the pain is actually coming back or not, because I always worry that I won't be able to stay ahead of the pain.  It’s not a fun way to live.

People with fibromyalgia are truly physically disabled, but it looks like there is nothing wrong with us.  For me, at least, I try to conform to what society expects out of a 46 year old mother who doesn’t look sick.  But there are days that it just isn’t possible.  And I will describe how that goes in post number two.

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