First, a little bit of education…
Fibromyalgia is a syndrome that affects approximately 10 million Americans and is more commonly diagnosed in women. Fibromyalgia is characterized by chronic, widespread pain that extends over large areas of the body. Unfortunately, Fibromyalgia also presents with a wide variety of other symptoms, including fatigue, insomnia, brain fog, emotional disturbances (depression, anxiety), irritable bowel syndrome, over-active bladder, pelvic pain and even reflux. It is not clear what causes Fibromyalgia, however research indicates that the diagnosis is closely tied to increased stress (physical, mental, and environmental) that triggers a “central sensitization” within the nervous system. This increased sensitivity leads to the perception of pain becoming heightened and chronic as it is in the syndrome. There is not yet a cure for Fibromyalgia, but lifestyle interventions, certain medications and supplements have proven to be very helpful in decreasing the symptoms.
Now on to the good stuff.
In light of National Fibromyalgia Awareness Day, I would like to let you all know a little bit about my story in living with this syndrome. I was “officially” diagnosed in 2014, but in retrospect began having symptoms in 2007. This time frame is all too common in those of us with Fibromyalgia, as it has been shown that it takes about 7 years to receive a correct diagnosis due to the complex presentation of the disorder. For me, symptoms began with some hand and wrist pain, generalized fatigue and tummy troubles. I was quick to relate these seemingly unrelated symptoms to using my hands more at work, poor sleep due to too much to do at work, and eating bad sushi. Eventually, I had lost about 15 pounds due to poor nutrient absorption, was waking up after 1-2 hours of sleep in crippling pain that brought tears to my eyes every night, and was hardly able to function during the day due to fatigue. At this point, I realized I needed help.
So, I did what most people do. I saw a rheumatologist for my hand pain and a gastroenterologist for my stomach troubles and left both appointments with prescriptions for pain medication and an acid blocker. I had high hopes that these interventions would help, but, alas, they did not.
Things continued in this manner for another few years, symptoms waxing and waning on a regular basis, having “good” days and “bad” days. All the while, I maintained my exercise regimen, as once I was warmed up I actually felt the best I would all day and continued telling myself it must be “normal” to feel so horrible, after all, my labs said I was just fine…
Fast forward to 2014 when I hit the wall. I had started a new job and was travelling regularly for work. I was under significant stress both with the demanding schedule I was keeping, as well as recent familial issues. I couldn’t seem to dig myself out of the vicious cycle of pain, sleeplessness, and the resultant fatigue and brain fog that were now completely impairing my ability to function. I had to do something, so I went to the Cleveland Clinic where I was officially diagnosed as having Fibromyalgia by the head of the Fibromyalgia program. She didn’t send me home with medication, and she didn’t tell me it would never get better. She gave me hope.
During the appointment, the doctor explained that Fibromyalgia symptoms can be improved, and the best way to do so is through lifestyle interventions. Based on my test results, she felt my stress from work (sleeping in hotels, changing time zones, flying regularly, and harsh deadlines), family demands, and internal stress (digestive issues, non-restorative sleep) were all contributing to my symptoms. She went on to explain that I had to make a change, a big one, if I ever wanted to get better.
Now, don’t get me wrong. It wasn’t like I heard this and immediately quit my job and changed my life. I dug my heels in a bit… Initially I went “part-time” thinking that would help (it didn’t- I still hated what I was doing) and worked with a therapist on family stress. I began a food diary and tracked what foods seemed to make me feel good, and which didn’t using an elimination diet approach. I took each day as it came, and did my best to make small changes each day. Over time, I realized that I had to leave my job, so I created a plan to do so without adding additional stress. I figured out what I wanted to do, and took steps to achieve that goal (which actually made going to the awful job more palatable as I knew I was moving toward my goal). I also made (some) peace with family stressors, although I have to say that is still a work in progress. Most importantly, I got my body back to baseline. I was able to improve my digestion, which allowed me to actually absorb the nutrients from my food, which gave me energy and improved my brain fog. Through research and a lot of trial and error, I found the right supplements and sleep tactics for my body, which allowed me to fall asleep and stay asleep so my body could regenerate.
I won’t say that I have “cured” my Fibromyalgia. The reality is, if I put too much on my plate, (get over-scheduled, stay up too late, get up too early, don’t keep to my nutrition needs, etc… etc…) my symptoms flare up. For the next few days, I have to make a conscious effort to keep myself in check and not allow my frustration with the syndrome further impact how I feel. I do my best to look at each “slip up” as a learning experience, and try to be grateful that I have these little warnings to let me know when I have pushed too far. Thus far, I have always been able to get back to my baseline of minimal to no pain, deep sleep and mental acuity within a few days using just lifestyle interventions.
What I hope this story has helped you to understand is that Fibromyalgia is real and it can be debilitating. I also hope that it sends a message of hope to you or any loved one that you know who is living with the condition to know that no matter where you are on the journey, it can be improved. Your body is constantly regenerating itself and you are in control of so many of the factors that can either drastically improve or limit your health. If you or someone you know ever needs someone to talk to about the journey, please don’t hesitate to contact me!
Colleen Baughn, OTR, CES
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