Friday, May 13, 2011

But You Don’t Look Sick…



That is often what people struggling with fibromyalgia hear from those who are unfamiliar with the condition.  Fibromyalgia is not a disease, but rather a syndrome or combination of symptoms.  Because there are no physical signs of fibro, many people (and unfortunately even some doctors) discredit it as anything being “wrong”.  It is an invisible, yet many times debilitating, condition that affects millions of people.

While the exact cause remains a mystery, the simplified explanation is that the pain center in the brain is in overdrive.

I have been living with fibro for 15 years (at least that’s how long it has been since I was diagnosed).  Though the level of intensity surrounding its symptoms vary by individual, every sufferer struggles with the common symptoms to some degree or another.

Pain: People with fibromyalgia suffer from widespread chronic pain.  Try to remember the last time you had the flu.  Remember how your body ached?  That is fibro every day of your life.  As I said, the level of pain may vary.  Many people with fibro find the pain to be the most challenging symptom of fibro.  I personally rate it third on my list of struggles surrounding fibromyalgia.  If I overexert myself physically and/or do not get enough rest, or if it is a cold rainy day, the intensity of pain deepens.  Some days it hurts even to wear clothes.  Most days, however, I am able to work through the pain but I MUST NOT over do it or I’ll be down for at least 2 days. A dull muscle ache is with me every moment of every day.

When being diagnosed for fibromyalgia, the doctor (usually a rheumatologist) will check for what they call tender points.  The following diagram shows the location of these tender points:


The patient must feel tenderness or pain in at least 11 of the 18 tender points when pressure is applied.  The patient must also have suffered widespread pain in all four quadrants of the body for at least 3 consecutive months.  FYI: I am MOST tender in my hips, as it took Hubs FOREVER to learn this.  I don’t know how many times he found me asleep on my side and would wake me by shaking my hip.  I not only would wake up, but would wake up swinging-ready to fight.  Seriously, hitting me with a sledgehammer would’ve been less painful.  He finally learned, thank goodness!

I said pain is third on my list.  Well, second is brain fog.  I am a very detail-oriented person, so being unable to think clearly is a major thorn in my paw.  When I say brain fog,  I mean it is like my thought processes are trudging through very thick, waist-high mud.  It is difficult to gather my thoughts and I often forget what I am saying in the middle of saying it! Memory and concentration are severely impaired.

First on my list is chronic fatigue.  This goes way beyond the normal tiredness that follows a full-day’s work.  It is being so tired I am literally too tired to speak or to even think.  Walking across the room is a major chore.  Again, some days are worse than others, but I am always tired.  A single trip to the store can exhaust me.  Some times I get tired just riding to the store or find myself leaning on the cart to hold me up because my energy suddenly diminishes.  A big cause of this, I know, is the fact that sleep problems also accompany fibromyalgia.  Remember, your body hurts everywhere.  No sleeping position is comfortable for longer than 10 minutes at a time.  This results in a night of tossing and turning and very rarely reaching the REM sleep that is so restorative. 

Other minor, or less common, symptoms are headaches/migraines, restless legs, depression, rash/skin sensitivities, irritable bowel/bladder, anxiety, and dry eyes/mouth, impaired coordination, neurological problems and vision problems. 

So what is a person with fibro to do?  I have been placed on countless anti-depressants, which is supposed to balance the serotonin levels.  I have also been put on muscle relaxers.  These did not help me at all and left me extremely lethargic.  A home school mom cannot be lethargic, so I chucked all meds.  There are a few new meds on the market, like Lyrica, that have been FDA approved for fibromyalgia.  I have not tried these, so I cannot comment on their effectiveness.  On days that are really bad, I treat with OTC meds like Aleve.  Products with guafenisin, like Mucinex, are great because it helps relieve inflammation and congestion.  Water therapy is also recommended and I have had good experience with it, though I am unable to join a pool at this time.  I have also found that eliminating or at least drastically cutting back on wheat products is also very helpful.  The gluten in wheat aggravates inflammation in the body, making pain and fatigue more prominent.  Trying to get plenty of sleep is essential.  Avoiding as much stress as possible is also very important.  Mostly, it is best to know your limits and stick to them without exception.  This is how I manage from day to day.

For more information, check out the National Fibromyalgia Association.

If you know someone with fibro, it is important that you show support and understanding.  It is not “all their head”.


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