fibromyalgia story.jpgA few weeks ago I spoke with a few followers on Twitter. We are complete strangers with one big thing in common: we have fibromyalgia.

I started Pain-Free Kitchen specifically for people with Fibromyalgia. Because while there are many gluten-free blogs, there are very few that focus on eating to manage Fibro pain. But the problem is I haven’t really spoken about Fibro at all. At least not since last spring.

And I know why. It’s because I’m not in pain. When the pain is there, it’s all you can think of. But since really focusing on my eating, pain hasn’t been an issue. I haven’t always been this lucky.

Today I thought I would share how it all started and what I went through to get diagnosed.

The Accident

Most people who are diagnosed say it starts with an accident. For most people this is a car accident. For me, it was water skiing.

Jake and I were visiting his parents July of 2010. He grew up on a lake, so water skiing was a big part of him and he wanted to show me. When given the chance to try myself, I thought why not.

On my third attempt, I heard a large “POP,” and felt a warm sensation on my left back thigh. And then I felt nothing. I couldn’t move my leg at all. I haphazardly swam to the boat, using just my arms, dragging my left leg behind me. Later, Jake joked that he thought I just didn’t know how to swim.

Fast forward a few hours later, ┬áJake and I are at the ER. My left knee was three times its normal size, discolored bright red and black, and in incredibly amounts of pain. The ER gave me Vicodin, told me to get a brace, and sent me home. To this day, I’m not entirely sure what I did to it. I never actually went to get an MRI…Just wore a brace for two months and called it a day. Genius, I know.

The Pain Starts

The accident was the end of July. In September, I started waking up with back pain. Sort of a mix between the sore you get from working out too hard the day before and getting hit by a bus. I immediately stopped exercising. Two weeks later and no change.

how it started

I then thought maybe it was my bed. I tried sleeping on my couch. No change. I then resorted to just sleeping on the floor. Nope. I took away all pillows and slept completely flat on the floor. Nothing.

This is when I started to panic. The pain was all-consuming. It didn’t go away. And just got worse. There is a particular sort of crazy that people with fibromyalgia get. It’s the crazy that comes from knowing there is nothing you can do to make the pain stop. Pain is supposed to tell you something is wrong. To tell you to pull your hand out of the boiling hot water or stop bending your leg a certain way. So when you first start with fibromyalgia pain, you contort and stretch and twist in every way possible praying it will ease something. And it never does.

Doctor #1

At the time, my doctor was still in Springfield, IL where my parents live, not Chicago. So a friend recommended I check out a chiropractor. I went. After the exam he said that my hips were misaligned. To be fair to him, they were, most likely from limping for two months after my accident. So he popped them back into alignment and I went home. The next morning I was screaming in pain.

I went back and told him it had become worse. He told me it would go away after a few more treatments. He also said my collar bone had popped out of place because of a dislocated rib. I stood against the wall and he hit my collar bone as hard as he could. My arm went numb. I went home and never went back.

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Doctor #2

Now the pain was in my arm. I was certain the chiropractor had done something. (In reality, fibromyalgia pain travels. Most days it’s in my back, other days it’s in my arms or legs). So I jumped on a train and went home to my parents. We booked an appointment to see my doctor the next morning.

The doctor examined my back and immediately said she had figured it out. She diagnosed me with severe scoliosis. She said when she touched my spine, it was clearly twisted. So she booked me for an x-ray later that day.

Doctor #3

I got an x-ray. And the scoliosis diagnoses went out the window. My spine was perfectly straight. The doctors looking at my x-ray couldn’t understand it.

Later they would find out that it wasn’t bone they were touching. It was muscle. They were so contracted that the doctors thought they were touching bone.

Doctor #4, #5 and #6

At this point I started getting concerned. The pain was still excruciating and showed no sign of stopping. It was also November. I was referred to a specialist. Three in fact. And was poked and prodded for hours. They took multiple x-rays. And many vials of blood.

At the end of three hours, all three of them were convinced I was pregnant….

So convinced they made me take a blood test. I came home angry, upset and obviously not pregnant.

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Doctor #7

I was now taking valium, vicodine, codeine and two others I can’t remember. The pain was always the worst when waking, especially after naps. Naps were the absolutely worst. So I forced myself to never take them. Which was hard, since the pain would keep me from sleeping. I kept waking up in the morning, not only in pain, but as if I hadn’t slept at all.

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Going to work was hard as well. At the time I was still a teacher, so I couldn’t exactly pop a Vicodin during the day. And the pain would intensify with stress. There were days that it got so bad, that the muscle from behind my neck to my shoulder would seize up and I couldn’t move my head.

My insurance finally approved an MRI (beginning of December). I took a full body closed MRI at the hospital next to my apartment. At this point, all of my blood tests started coming back, all normal.

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Doctor #8

And then the MRI came back normal as well. My parents and I had been thinking it might be a pinched nerve, so when everything came back fine, we were surprised. Multiple doctors looked at it. Nothing.

Until….

Doctor #9 and cancer

I got a phone call from my first doctor. She received the results of my MRI and needed me to travel to my parents’ right away. She wouldn’t say why. I jumped on the train that day and was in her office the next morning. She explained that my MRI had been passed along to a few doctors and they found something scary. I had a few dark spots on my spleen and she was passing me along to a oncologist.

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For the next week I was in shock. This was the fear thatI had from the beginning. I stayed with my parents for a while, trying to figure out what to do next.

Thankfully, the answer came quickly. The oncologist said it was a false alarm. The cysts were completely benign. I was obviously relieved but at the same time incredibly frustrated. I didn’t have cancer, but I did have pain. Never ending pain.

Doctor #10

I came home and decided I was just going to have to live with the pain. I had seen multiple doctors and none could give me an answer. I relied on my vicodine to get me through the worst of it. Months later, I booked an appointment with a 10th doctor. I can’t even remember why I did, but I have her to thank for finally helping.

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I will never forget showing up to her office. She sat me down and immediately poked me in my collarbone. And it hurt! Then she poked me on my elbow, hurt again. Poked me inside my knee; I jumped from the pain.

Later I learned these are called tender points. To be diagnosed with fibromyalgia, you will feel pain when pressed there. I felt pain in every single tender point. I finally had a diagnosis. After months of pain, I finally knew what I had. Only to learn there was nothing I could do about it….

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I remember trying to explain it to friends. That although I was obviously glad it wasn’t cancer, that what I had wasn’t fatal, the idea that I would be in excruciating pain for the rest of life was hard to wrap my mind around.

There were days when I thought there was no way I would ever get used to the pain. This is why so many doctors think Fibromyalgia is just a form of depression. It’s not. It causes the depression. Pain day after day after day with no end.

It wasn’t until I was at a BBQ at a friend’s when I met a woman who told me she also suffered from fibromyalgia, but hardly felt pain at all since going gluten and dairy free. That one suggestion changed my life.

 

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