My Story: Life with Fibromyalgia

My Story: Life with Fibromyalgia

 

Tina Samuels

I wasn’t a person of perfect health and I believe this triggered my onset of fibromyalgia, a complex chronic pain disorder that affects over 6 million people in the U.S. Like many sufferers, it took years before my condition was properly evaluated and diagnosed.

I was first diagnosed with interstitial cystitis, or painful bladder syndrome, when I was 24. I took many antibiotics over the course of the next eight years for infections and irritations. These antibiotics started to either work less effectively or led to severe allergy symptoms. I had two bouts of anaphylactic shock caused by antibiotics. I’m now allergic to six different drugs, all stemming from medications I’ve taken since 1993.

The last hospitalization for anaphylactic shock was for taking a full 10 day course of the antibiotic Macrobid. I fell on the floor when I woke up and couldn’t stay conscious or breathe very well. At the hospital they couldn’t treat me effectively due to my sensitivity to Benadryl. I was given morphine and shot full of steroids to treat the allergic reaction. I was never the same after that hospitalization. I believe it was this near-death allergic reaction and seven days in the hospital that provided enough “system trauma” that it started my fibromyalgia symptoms.

The Diagnosis

I was increasingly tired, sore and sleeping poorly. I didn’t understand why I was always in pain and losing what little strength I had. It took a lot out of me. I began taking Elavil, an antidepressant, to help me cope with chronic pain and sleep disruptions. I went to various doctors who all told me I was either “fine,” “showing no illness” or “healthy.” Eventually I was referred to a rheumatologist who found my pain tender in 14 of the 18 tender points (11 needed for a diagnosis). I was referred to a pain clinic in 2008. Only then did I finally learn I had fibromyalgia and what my prognosis was: a life of chronic pain for which there is no cure.

The Pain Clinic and Medication Hustle

The pain clinic was good and bad. They wanted me on a cocktail of three different narcotics and I wanted a treatment program free of medication. They did allow chiropractic and acupuncture care after I turned down the medications. I’m still on Elavil, slightly raised in dosage, and this does help with the nighttime sleep disturbances and the everyday pain. The acupuncture and the chiropractor also help relieve the fatigue and the muscle pain.

Good Days and Bad Days

My symptoms on a good day are mild aches, stiffness and slight fatigue. I’m able to do basic household chores and I can write.

On bad days, I hurt in every major joint but especially in my neck, hips and knees. My fingers won’t type, joints ache to the point I can hardly move and I get no sleep due to insomnia. My TMJ (temporomandibular joint disorder) becomes aggravated and my jaw is tight, clicking and painful. I usually get a headache that may progress to a migraine. I’m in a “fibro fog” that effects my concentration and mental alertness. I often get words mixed up. For example, I’ll point to my feet and say “you know, these things with laces that I wear on my feet,” because I can’t think of the word “shoe.” I know what it is and can describe it, but the word will escape me. The mental fog is almost worse than the pain for me.

Sometimes I just sit quietly and watch TV because walking, driving or anything other than lying down hurts too much. There are days where I don’t talk at all because I can’t string a sentence together that anyone is going to understand. Weather changes, anxiety and hormone fluctuations seem to trigger these bad days.

Support System

I know it is a huge drain on my family when everyone wants to do something and I hurt too bad to do it. I know they see the drug ads on television and don’t understand why I don’t rush to try something new in hopes of better days. I’m still too afraid of having a third allergy shock to do that.

Fibromyalgia is definitely a life-changer. You don’t look sick, but you are. However, I’m a blessed person in that I have more good days than bad, and for me, that’s enough for now.

Tina Samuels is a freelance writer who has just begun her third book. She’s written many articles on health, specializing in diabetes care and fibromyalgia.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Tina Samuels