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It recently came up that many people seem to know someone with Fibromyalgia. From television ads for Lyrica, to personal experiences with patients, many people have some very interesting ideas about what the syndrome is and what it is not. I would like to counter these with a personal story about my experiences with my diagnosis and disease process.
After over ten years of crippling exhaustion, abnormal (but not too abnormal) test results, and multiple different referrals to varying specialists, I found myself in the office of a Rheumatologist. This man did a physical examination and said plainly, “You have fibromyalgia.” I was prescribed different supplements, told to get some rest, and to follow up in a period of weeks. I was told to take care of myself.
I hobbled out to my car and sat in the driver’s seat. I cried.
I sobbed like someone with a cancer diagnosis. More than sad, I was angry. I was angry and I was outraged. How is it not Lupus?! How is it not something actually real and treatable?!
I still wish it was Lupus.
What is Past Is Simple Medical History
At age 23, I had my daughter. I was a single mother. My mother had cancer. Stressful, sure, but not so stressful that it was insurmountable. I struggled to make a family with my daughter’s father. Slowly, his behavior changed. Still supportive, but more distant all the time, his behavior became more and more erratic. Understanding the pressure for a new family, I provided distance. This distance gave him more room for his infidelity. We broke up within 6 months of our daughter’s birth. I was exhausted by the stress and ongoing custody nonsense. It was physically and emotionally taxing, but I trudged on. My ex had a new girlfriend who was very interested in usurping my position as mother… I tolerated it. I cried, I complained to my friends, I went out, I went to the gym. I did all of the things they suggest you do. I ate right, I exercised, I went out with friends. I spent time with family.
I was exhausted.
Eventually, heartbreak healed, new love dawned for me and I spent almost 5 years with someone where the very existence of the relationship was always in question. This was stressful, but nothing unusual for me. My mom had cancer two more times and was diagnosed with a progressive inflammatory neurological disease.
In the midst of living, my new boyfriend encouraged me to consider my career options and I returned to nursing school. I began and completed nursing school. Every semester there was a crisis; some new stupidity with custody, my daughter’s grandmother misbehaving and attempting to feed her food she was allergic to. There was always something.
But all of this was the stress of living; the stress of life as I know it.
I began therapy at the health center for the stress of being in nursing school. I went for a safe place to vent and to learn new techniques. Every nursing student eventually went there in a tight ball of tension, so I found myself in good company. I was always exhausted, bone tired, and able to sleep at the drop of a hat. I was diagnosed with depression. Why shouldn’t I be depressed? I checked off the boxes: tired, under stress, weight gain, hypersomnia (sleeping too much). I was also tested for hypothyroidism which runs in my family. I was told that all of my blood work was normal. Normal, normal, normal.
Eventually, I graduated nursing school on the Dean’s List with multiple scholarships. I earned a position as a new graduate nurse working nights on my desired unit. Despite a long drawn out breakup that did more harm than necessary, life was more positive for me. I was gaining more and more independence, but I was still exhausted. In this time, I managed to lose over 50 pounds and became an avid runner. I began dating again.
But I was still exhausted. Any extra time I had was spent sleeping or in acquisition of caffeine.
I developed crippling shin splints. My shins were so inflamed, that they were pink and heat could be felt radiating off them from over 4 inches away. I was put on COX-inhibitors. I was told that I could no longer run. Period.
I was still exhausted.
It was always the same excuse. Stress. It is stress. Since 2003, I have been told a variation of the following: “Of course you’re exhausted! You have (a new baby, a toddler, started school, are in nursing school, a new job, started working night shift, gone through a break up, have a school-age child, etc)!” Over 10 years, I heard some variation of the excuse. Finally, I found a decent doctor who listened to me and the battery of tests began.
My labs began changing. I was no longer an exhausted 20-something. Now I was an exhausted 30 something. The hormone tests began and were rerun. The leader for my clinical problems was Polycystic Ovarian Syndrome, but I did not meet criteria. My hormone levels were too normal and upon ultrasound, my ovaries were normal. We began looking at more rare syndromes and processes, but my labs were all too normal. I began to have increased gastric problems. My food stopped digesting. I began taking medications three times a day to make my stomach actually work and to reduce nausea. I visited a doctor and had an upper endoscopy. Despite never having a problem with acid or reflux, I was discovered to have redness and swelling across all of my upper GI tract.
I did not receive a diagnosis at this point; I was simply told that I should probably start taking Nexium to reduce the stomach pain and the redness. It was apparently some sort of GERD. There was little follow up. The GI doctor determined there was nothing else for them to do.
I was still exhausted. I was exhausted and my food allergies increased. As a part of the larger barrage, I received allergy testing (both blood assay and skin testing) and discovered that my food allergies had been retained and further increased. I was reacting more severely to old allergies and had developed new ones. Now allergic to wheat, soy, and almonds, I was put on a delightful elimination diet. I was able to eat plain potato, plain white rice, plain chicken and plain beef. I was on this diet for ever 2 weeks. I stopped eating in protest. Life without coffee was untenable.
I managed to have a sleep study. The weight gain beyond what I had originally weighed troubled my doctor. I have always snored and there was a risk that all of this could be solved with a simple CPAP mask.
After one night, it was determined that I had no sleep apnea. My sleeping was completely normal.
None of these discoveries explained my primary complaint of exhaustion. Just walking up one flight of stairs would leave my muscles burning and twitching. I was found to be mildly anemic: I was anemic enough that for the first time in my life I no longer qualified to donate blood. My iron levels were found to be low. My vitamin D3 levels were also low, I was encouraged to start supplements.
One day, I woke up and could barely get out of bed. Beyond the daily pain of waking, feeling like I had been hit by a truck, aching all over, I simply could not make my muscles cooperate enough to get out of bed.
I was referred to a couple of Rheumatologists: one for an initial opinion and the other for a second.
Despite having certain positive autoimmune markers tracked and rising every 6 months, the tests were not sufficiently abnormal as to constitute a reason for alarm.
It’s Never Lupus
As House, MD likes to say, “It’s never Lupus.”
It wasn’t. At least, I still do not meet criteria for an official diagnosis. My neurological and autoimmune issues are such that they are not bad enough at this point to constitute any diagnosis other than Fibromyalgia.
Diagnosis is composed of:
|1. Pain and symptoms over the past week, based on the total of number of painful areas out of 19 parts of the body plus level of severity of these symptoms:
b. Waking unrefreshed
c. Cognitive (memory or thought) problems
Plus number of other general physical symptoms
|2. Symptoms lasting at least three months at a similar level|
|3. No other health problem that would explain the pain and other symptoms|
Source: American College of Rheumatology, 2010 – See more at: http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia#sthash.V1KoqkoW.dpuf
This was in no way reassuring. As a nurse, I have had “fibromyalgia” patients; whiny middle-age drug-seeking women. I was not one of them. I was not going to be one of them. While I refuse to be one of those patients, we share a diagnosis. All different types of pain, mobility, strength, locations of pain can all fall under the vague and useless umbrella of “fibromyalgia”.
Even less reassuring was the treatment plan I was offered. I was told that therapy might help, diet and exercise (ha!) might help, but there was little to be done in terms of medication management. Two medications were approved for Fibromyalgia: Cymbalta and Lyrica. I was already taking a high dose of Cymbalta with no real positive effect on any symptoms. I wanted to stop taking it, but after one day off the medication and experiencing some of the discontinuation syndrome, I decided I would rather avoid it.
About 3 years post diagnosis, I’m still here and I’m still angry. I am a neuroscience nurse by training with specialties in public health, stroke, and neuroscience. I spend my waking free time on Ricochet and looking up information on Fibromyalgia research.
Your turn. Ask me anything about this.