Thursday, March 7, 2013

The Invisible Affliction; Fibromyalgia

Many of your friends, family and neighbors are afflicted with a frustrating, debilitating disease called Fibromyalgia, which affects about 2% of the population or roughly 5 million Americans. I have come to the conclusion that Fibromyalgia (FM) was designed to be a conglomeration of each and every bodily symptom that make one feel like “crap”, but only if its attack can be wholly invisible.  Seriously, its like the disease was designed by some bored omnipotent being that thought it would be funny to make people feel miserable,  but look and test completely healthy; the joke being that everyone would assume that we are simply nuts.  Consider this encounter:

Patient: "Hello doctor, Every part of my body is in constant pain. Also, I keep losing my keys, and sometimes I run into walls or trip over things that aren't there.  I get random headaches, and sometimes I have anxiety for no reason.  I'm really, really tired.  Oh, and there's this weird itch on my legs that won't go away.  Also, I'm nauseous and my back hurts, like a lot. My feet are freezing, like all the time"

Doctor: "Um, ok... wow, thats a lot of symptoms!" Wow, this b*tch is nuts.

When I first got sick, my initial visit to the GP went basically like that. I had so many weird symptoms that the doctor was clearly flustered, annoyed, and didn't know what to do with me. My blood tests were normal for the first 5 years of my disease. (Eventually that changed; I now have the diagnoses of Fibromyalgia, Mixed Connective Tissue Disease, Raynauds, and Autoimmune Hepatitis.)

Symptoms of Fibromyalgia mimic life-threatening or serious progressive diseases.  Migraines? "OMG, I have a brain tumor!".  Severe joint pain? "OMG! I must have arthritis!" Debilitating fatigue? "I seriously must have a tumor!"  Unexplained itching? "OMG! Scabies! Ew!" Losing everything that is of value to you at least 5 times a day? "OMG! I have early-onset Alzheimers!"  Eventually, after seeing an average of 23 Specialists and 7 GPs, you are told that there is nothing wrong with you.  "Yay?"

A clean bill of health is anything but wonderful news for the FM sufferer.  Because, you are left to believe that at worst, you are psychotic, and at best, a whiny b*tch.  You can't get out of bed.  You can't walk in the morning, you are so dizzy you trip over non-existent obstacles regularly.  You can’t open jars anymore.  You can't form complete sentences or do basic mathematics (This symptom is referred to as “Fibro-fog”, because patients report feeling as if their brain is in a fog.)  You are utterly and completely exhausted all the time, but can't sleep.  Insomnia is the most pervasive symptom of the disease, many doctors believing it is the lack of sleep which causes the remaining symptoms.

Eventually, most patients with FM are miserable, hopeless and feel utterly alone.  They wind up seeing a GP twice a year whom has little experience or understanding of the disease, save watching a commercial for Lyrica.  "Here ya go, this will make you all better! Its ok, you can thank me later!  See you in 6 months.”  Enter the unavoidable hopelessness and loneliness.

A lucky few will wind up in the office of a Rheumatologist, where they actually stand a chance at feeling perhaps 15-20% better than they did before they started treatment.  If they are lucky, the doctor will treat them with respect and truly listen to their hodge-podge of teary complaints without assuming they are insane.  If the stars are aligned, the doctor may even believe that Fibromyalgia is a real and serious disease, and treat it aggressively.  I, thankfully, am one of the lucky few.  I have to wait months to get an appointment with my doctor, Claudia Saba of Fairfax, but I would wait a decade if I had to.   She hugs me, cries with me, and treats my disease with a passion and fervor.  Best of all, I  know that she believes every word that comes out of  my mouth.  For a long time, she was the only one in the world who did.  My family and friends often suggested that I may be a hypochondriac.  However, I am now surrounded by a supportive family and husband.  (My husband jokingly calls my Fibro-fog "Fibro-f**k", because he misheard it the first time I said it [*I was crying at the time so it came out a bit squeaky].  He refuses to change his terminology though, because he says "no, it sucks.  it f**king sucks for you.  So I'm going to call it "Fibro-f**k".)

In the end, I feel about 15% better than I did when I started treatment.  For now, I’m no longer hopeless, and not in so much pain that I can't get out of bed.  I have a child whom I can get down on the floor to play race cars with, and I have the stamina take to occasionally take him hiking, or to Chuck-E-Cheese.  I play piano, I sew, I shop, I write a blog, and I still look cute in skinny jeans.  Best of all, there's just enough spark in my life that I feel quite genuinely happy a good deal of the time.  I may have one of the most horrible, painful, un-sung and invisible diseases that has been bestowed upon man (well, mostly women) kind, but I have Dr. Saba, my family, and I've still got my spark.   I have been living with this disease, among other autoimmune problems, for about 6 years, and I will be living with it until the end of my days.  But, life is good. truly and honestly, it is good.

Thank you so much for reading! Wishing joyful, pain-free days to all ~ PFM
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Tags: chronic pain, autoimmune, MCTD, UCTD, raynauds, lupus, spoonie, invisible illness, chronic disease, depression, fibro-fog, brain fog


  1. Thanks for sharing!! It's so great that you found Dr Saba and I'm glad you still have your spark!! Keep strong, stay positive and take it one day at a time! :)

  2. Glad you liked the post =D. Writing it was actually very therapeutic.

  3. You've described Fibromyalgia perfectly. Thank you for the pep talk.

  4. this blog on fibromyalgia is totally on point.

  5. Great post! Thanks you so much for the share. Keep up the Excellent work, we look forward to reading more from you in the future!
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