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Snapshot: Fibromyalgia Symptoms

It took me a long time to decide something really was wrong with me. For about three years, I cast aside the tiredness and pain I increasingly and regularly felt. I was only 24 when it first started, and yet I was getting up early, not sleeping well, getting winded from lifting something heavy. It’s amazing how many excuses your mind can come up with. It was 2006 and at that point, I hadn’t even heard of fibromyalgia, so it certainly wasn’t a suspect in my mind. But there was a quiet, niggling insistence that deep down, there was something truly wrong.

Eventually these thoughts became loud enough that I saw my general practitioner about it. I described my symptoms: the tiredness, the unreasonable pain. And between my own experiences and the fact that my mother has mild fibro, she almost immediately diagnosed me with fibromyalgia.

Fibro is a mysterious illness, I learned, one that currently has no known cause or cure, according to western medicine. It causes extreme fatigue, widespread pain through the body (it especially loves to pick on muscles) along with what’s known as “fibro fog”—the sudden inability to access information you knew just moments before. Along with the physical exhaustion and pain comes a host of other ailments which vary somewhat from patient to patient, but headaches, migraines, insomnia, muscle weakness, sudden dizziness and disorientation, tripping and falling, and digestion problems are all very common.

My GP ran blood work first, looking at thyroid and B-vitamin levels especially, but it was really just my symptoms combined with the family history that made my GP certain so quickly.

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I wasn’t sure how to feel about the diagnosis. On one hand, I was glad to have any validation that my illness was real and physical, but at the same time there didn’t seem to be anything to be done for it.

In the age of internet searches, I turned online looking for answers, and was disheartened by what I found. Sure, there were cures proposed, but each one was more absurd than the last, and very few people even claimed these had helped, let alone cured them. Graded exercise (where you increase your physical activity every day, regardless of how you feel) is one of the most prevalent suggested treatments, and also one of the most harmful. One of the few things we do know is that if you continually push your body beyond what it can endure, you WILL make yourself sicker, sometimes permanently. Acupuncture, massage therapy, special cleanses, weekend-long juicing retreats with regular coffee enemas, along with almost every known diet, medication or supplement was suggested at some point.

But when all you have to grasp are straws, you will. I tried every ridiculous suggestion, never feeling any different (except perhaps gaining an upset stomach from the sheer number of supplements I was taking, which included various mixtures of B’s, magnesium and special muscle oil from New Zealand.)

Then one day at the end of May 2008, my life imploded.

I had gone to lunch that day where I ate a gyro with my husband, took a nap and woke feeling like I was food poisoned. This was before I became a vegetarian. Not fun, but I attributed it to our lunch and knew that I’d feel better soon after I got it all out of my system. But after three days of feeling intensely nauseated and barely being able to eat, I saw a different doctor (mine was out that day). She barely spent five minutes in the room with me before forcefully telling me to take some Pepcid. The appointment was quickly over.

As the days wore on, the pain in my stomach moved from an all-over, nauseating pain to a quite localized area about the size of my fist, just below my bottom ribs on my right flank.

Appendicitis, I wondered. It seemed like it had come on too gradually, and wasn’t in quite the right spot, but I was in more agonizing pain each day. By day 10, I couldn’t take it anymore and went back to my regular doctor.

Bless her, she assured me right away it wasn’t simply food poisoning, but it wasn’t appendicitis either. A kidney infection was a logical guess, so I was sent home with antibiotics and painkillers, glad to have finally gotten to the bottom of it, even if I would probably still feel not great for a few days.

The days passed. I took my meds, and I felt no better. Thus began a quest that lasted nearly four years of trying to figure out what the hell was wrong with my right flank. I’ve seen over a dozen specialists now, had every possible test run (and re-run), tried more supplements, medications, diets … every imaginable possibility for relief. Eventually my pain specialist started performing localized nerve-blocking injections in my flank, and those have made a world of difference. The pain never ever goes away, but it’s become much more bearable.

With all this, after so many years of testing and head scratching, the doctors eventually decided that the pain was just the fibro showing up in a way that wasn’t classic. Chronic pain does go along with fibro, and I have plenty of that kind, as well: muscles that mutiny and remain inflamed and injured for months after, say, a slightly more forceful toilet scrubbing than usual, constant headaches and frequent migraines. There are many days I wake up and feel like my whole body hurts for absolutely no reason at all.

The last five years have been exceptionally difficult, and I don’t know what the next five may bring. There is so much in my life that’s out of my control; I had to do something to deal with the pain and anger and frustration I was feeling. I started taking self-portraits.

I had a heavy background in visual arts, but had mostly painted with acrylics and watercolors up until then. Gradually, it got more and more painful to wield a paintbrush, so I looked for other ways to express myself. My husband is a talented photographer, so I turned to the camera and asked him to teach me how to use it. I’d set up my photo, turn on the ten-second timer and dash around to my spot in front of it. It was a steep learning curve to be on both sides of the lens at once, but when the photos came out the way I saw them in my head, it was magical. It was so cathartic. It was something I had complete control over—a way for me to express myself, a way for me to viscerally portray the journey my body was taking me on.

And somewhat ironically, I came to love photography far more than I’d ever loved painting. It was truly my medium, and I might not have discovered it if it wasn’t for the anguish I was feeling at the time. I can create anything with my camera. I can invent worlds full of magic and beauty, lands filled with mysterious, ethereal creatures. I can even create a place where my body functions perfectly with no pain.

One of the things I love to do in my work is portray fibro to those unfamiliar with it. Every person who has been given that diagnosis has to contend not only with their body, but with a society unsure if our disease is “real” or not, questioning if we’re actually sick or just looking for a free ride. Thankfully, it does seem that the tide is slowly turning. Fibro is becoming more and more accepted. Scientists estimate that fibromyalgia affects five million Americans 18 or older. Between 80 and 90 percent of people diagnosed with fibromyalgia are women.

However, there is still a great deal of misinformation and disbelief. Portraying something in a visual way can startle people in a way words don’t always reach. Seeing our sickness visually has brought many people over to the side of belief. The faster we can eliminate the harmful half-truths and outright lies surrounding this disease, the better. One common mistruth is that fibro is a mental illness and/or really just depression and should be treated accordingly.

Photography is not easy for me; it always causes pain after a shoot, and the hours I spend editing the images wreak constant havoc upon my dominant hand, arm, and shoulder. But it’s not something I will ever give up. It does me so much good to create these alternate, symbolic worlds, and it does too much good in reaching those unaware of the brutal reality that is fibromyalgia. Let us continue reaching forward, even if the reaching kinks our necks in the process.

Sarah Allegra is a fine art photographer from Los Angeles, specializing in mythic, conceptual images. If you don’t mind a little artistic nudity, you can see more of her work on her site Sarah Allegra.The entire set of fibromyalgia photos (still a work in progress) can be see here.

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