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The Many Triggers of Fibromyalgia

2009 January 28

Most patients with Fibromyalgia can pinpoint the inciting incident they at least suspect was the catalyst that triggered their Fibromyalgia symptoms. But as is the case with all things Fibromyalgia, no two incidents are necessarily the same. For some it was post pregnancy or minor surgery when their symptoms began. For others it was after a viral infection or a bout of mono. Emotional stress is another common cause cited by patients. I have not come close to listing all the variables and possibilities that trigger Fibromyalgia, which clearly helps demonstrate the complexities doctors face in diagnosing and treating FM. There were two inciting factors in my history with Fibromyalgia. The first brought on the condition, the second gave it superpowers!

woman-rollerbladingIt has been nearly thirteen years now since the onset of my FM. At the time I was a healthy and active person. I worked full-time in management at a high-energy, high-stress job which I thrived on. I had one speed during this period of my life – fast and furious! In addition to working full-time, I took evening college courses. I had an active social life which kept me going the nights I was not in class. I was physically fit and active – rollerblading, hiking, backpacking. My days were full and my down time was pretty much non-existent.

And then early one morning as I was showering for work, everything changed. It was about 5AM. I had my back to the water and turned towards the wall to grab the shampoo. I felt my feet slip out from underneath me and understood immediately I was going to be hurt. There was nothing I could do. Slowly I started falling to my right, out of the tub and towards the toilet. There was only the thin, filmy shower curtain to slow my progress. With nothing to grab hold of, and no way to stop my momentum, all of my body weight was behind the impact as my head smacked into the porcelain toilet tank. The collision was strong, solid and in that moment painless. I fell to the floor stunned, awaiting the pain that I knew was lying just beneath the shock.

From there my memories are vague. I recall the nurse in the ER asking me “Can you point to your nose for me?” I recognized the word “nose,” but I could not contribute the familiar word to any part of my body. I hit my head just above my right temple. The impact was so hard I broke the lid to the toilet tank. Don’t think that hasn’t been a source of humor for my family over the years! It is one of the reasons my husband and I named our business Hard Head Media (the other being that he is the most stubborn person in the world!).

I was on disability for 6 months trying to recover from this accident. I never did. The trauma to my brain improved, but the symptoms of Fibromyalgia began to set in. The all over body pain was the worst of it. It was so bad I had to lay in bed naked because I could not stand to feel clothes against my skin. Even the weight of the sheet was sometimes too prescriptionmuch. PAIN! Everything else was gone and pain became the dominant fixture in my life. Each time I complained to my doctor I was feeling worse, she said “You couldn’t possible be. Enough time has passed. You should be feeling better by now.” It would make me so angry and desperate to sit in her office and plead with her for help, only to be handed another prescription for drugs. I did not want to mask the symptoms, I wanted them to GO AWAY!

I was persistent. Finally she sent me to a Rheumatologist who then sent me to a Neurologist. The Neurologist was fun! I was his last patient of the day. My appointment was for 4PM. At 5:30PM I was still sitting in his waiting room. First he tried to send me away, but I refused. I wanted answers and he was going to give them to me. He took one look at me – not my chart, just me – and said “You want me to tell you you have a brain tumor. Well I am not going to tell you you have a brain tumor. But if it turns out you do have a brain tumor, you are the kind of person who will sue me.” He was a lovely man. We still exchange Christmas cards to this day! But he did finally do one thing right for me. I sat in his office determined and unintimidated and he finally consented that he thought I had Fibromyalgia. I had never heard the term Fibromyalgia before, but I was relieved to have finally been given a name for what he believed was causing all of my symptoms. He referred me to a pain specialist and she was the one who helped me get my symptoms under control.

Dr. DuQuett is her name. She was (probably still is) a no muss, no fuss kind of doctor. She was firm, direct, and not for a second did she encourage me to feel sorry for myself or let myself feel victimized. She is the one who refused to extend my disability. She forced me to redefine my life and discover how I could still be a productive person, even with a chronic pain condition. Tough love. First she put me through 16 weeks of therapy at a pain clinic though. There I learned how to reduce my symptoms with physical and aquatic therapy, meditation and relaxation, and biofeedback. I have said it before, I believe she gave me an incredible gift. I still suffered through many Fibromyalgia flare-ups after my treatment, and there were times that I did wish I was on permanent disability, but the majority of the time I managed, and sometimes I even thrived.

From when my treatment at the pain clinic ended in 1997 until the next inciting factor in 2006, I managed fairly well. My life was different. Fibromyalgia was a constant presence, but I learned to adjust to my new reality. I became a freelance sales rep and grew my territory into one of the top in the nation. I continued with my evening college courses, and in 2004 graduated with a degree in Literature and Writing. I got married to the amazing man who I had just started dating 6 weeks before the tub accident. We bought our first home together and traveled frequently. Life was good. But that all came to a screeching halt on the day my Fibromyalgia got superpowers! Dunt, dunt, duhn!!!


To be continued…

Continued here: How my Fibromyalgia Got Superpowers.

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12 Responses leave one →
  1. Juz permalink
    January 28, 2009

    I enjoyed reading your story and can’t wait to read about your super powers!

    Thanks Juz. I should probably clarify that they are evil superpowers! FH

    • January 21, 2012

      I read your story and it was very inspirational. My husband, whom is a surgeon, says that fibromyalgia is a false diagnosis for doctors that can’t figure out what the heck is wrong with you. I can’t disagree any more!! I have it and it was due to a simple addition that I added to my body for Christmas. It was supposed to be the “breast Christmas ever”, if you get my point. It was as simple as that and it went wrong. I had a post operative infection, had an allergic reaction to the antibiotic I was on for 3 weeks, went into liver failure and almost died. I spent 3 weeks in the hospital and 3 months out of work. They gave me steroids to combat the liver failure and anaphylaxis and I ended up with steroid induced cushions syndrome and went from 120 lbs to 180 lbs in a matter of 5 weeks. And then the pain started!!! Oh my God, I didn’t know what hit me and it was out of the blue. I went to a pain management doctor and unlike yours, they completely over medicated me and that put me back in the hospital for another week and left me feeling a little crazy and untrusting. During the 3 months home and with the help of a holistic doctor I was referred to and a medication called Savella, I went from barely able to walk with a walker to slowly walking without it and eventually running again, as I too was very active before my surgery and this mess they call fibromyalgia. I completely understand the whole temperature thing, and living in Florida with the humidity and a lot of different pressure systems with storms, I don’t need to watch the weather channel, my body tells me when the storms are coming and when it is going to get cold. I am a nurse and I woke up today after a very busy, stressful week, in terrible pain and was on the computer and stumbled across this blog and found it very motivational to get myself up and out of the house to get moving and not feel sorry for myself, so thank you so much for validating our disease process and helping me to feel like I am not so crazy and it is not all in my head as my husband thinks it is. It has been 3 years since my surgery and for the most part the pain is controlled, but for some reason this week is pretty darn horrendous.

  2. January 28, 2009

    Ouch! I had a similar situation just a few weeks ago. Fortunately for me my husband was in the bathroom at the time and caught me as I fell, although I still tore down the curtain, mangling the rod and reemphasizing the tender zones on my thighs. My instigating incident was at the tender age of 13, when my brother destroyed my sister’s car by driving it into the back-end of a parked car on my way to Easter Sunday services. I hit the back of my head on the windshield, breaking through and smashing my knees into the dashboard (who wore seatbelts in 1974?). I look forward to the remainder of the story.

    Wow Karla, what an awful accident. So you have had FM since you were 13? I am glad your husband was there for you to keep your fall from being worse, but any jolt or trauma for someone with FM can be devastating. I hope you are healing. Take care. FH

  3. April 27, 2009

    (not my website, but something I’m trying)

    If you have not checked out this website, you may like to. The information is controversial, but seems to be helpful for a lot of people.

    My daughter also had a brain injury. You are so fortunate you survived, and don’t have worse problems. I can sympathize with you!

  4. Natasha Turner permalink
    January 28, 2014

    Loved story , feel your pain. My Gp has put me on morphine and gabapentine and fibro drug duloxetine. Told me my muscles are week and my nerve system is malfunctioning. Hence its fibromyalgia. I too, have a serious head injury before this diagnose. So maybe it is connected. I also had kegs go, and can be left temporary paralyzed up to 3hrs.
    Thank you for sharing your story. I know hospital ain’t good for answers, but my GP is angel and told me direct! Trying to control it more so . best wishes x

  5. June 30, 2016

    I went thru 2 brain surgeries here in Arizona at the Mayo Hospital -the second one they had to open my head twice. First time to put wires in my brain to test what parts they could take out without it endangering language, reading, thought process, sight, memory etc. it was on my dominant side. After my 2nd brain surgeries testing they did the surgery. I was out of there fast and day after I got home I went to Bible study.
    Fast forward 5 years-we came upon issues of having only 2 antiseizure meds to choose from to keep me seizure free-we studied everything for me, but seeing a 3rd brain surgery being the best of choices. We decided doing it awake would be best. I just wasn’t given in depth detail on what to be cautious to look for and announce. I was just ready to rumble, always known as fearless Heather.
    As I laid in the surgery room, waiting on my surgeon for 8 years then, he came in seeing really how fearless I was. And we began. I am one wanting as much out as possible and willing to wait things out as long as possible until I see it is going to far. So one of the hot spots he’d test then cut began was my peripheral vision upper right on both sides-I let him go a while before speaking. Another was the surgery had a certain amount and timing of pain medication-if it ran out-we either did it in pain, or finished there. I wanted to complete it all. I had already had pain in my body-before that occurred-I just figured it happened in that kind of surgery and would dissipate.
    Was amazing at home healing for a month – once I started functioning my left foot was killing- written off first as achillies tendon they put shoe on me… Week later I was in horrific tears at a foot doctor appointment telling him it was no longer just my foot -it had spread in a week all over my left leg, right leg, to my shoulders-horrific pain.
    So many tests. We took a part that controls pain in my brain, during that last surgery.
    In addition I’m sure fibromyalgia played a roll
    I just know there are states I can’t live in. Right now it is every single one except AZ. We’ve tried three since my surgery unsuccessfully-cold brings on my pain bad, humidity enhances auras and seizures-so dry heat is for me.
    Medication best when really bad is one made for nerves. Nucynta.
    I’ve had a lot of rejections to others labeled for FM. Unfortunately when your body has gone thru so many times over an over for your whole life-it becomes resistant.
    God bless you. Pray all goes well!!
    I’ve been thru so much since I got pregnant in 2000 with my angel who is 15 today- adopted by the man I’ve been with since she almost 2. Just shortly after my ex beat me after my 1st brain surgery. She has only known him as dad and ex let go. She was there sir all brain surgeries and all screw removals. Seven times. Strong girl.

    Much love.

    Heather Siebens

Trackbacks and Pingbacks

  1. TBI and Fibromyalgia « Broken Brain - Brilliant Mind
  2. A Look Into My Journey « Fibromyalgia Haven
  3. How My Fibromyalgia Got Superpowers! « Fibromyalgia Haven
  4. Which Came First, The Pain or The Emotion? « Fibromyalgia Haven
  5. When Food is Not Medicine | Fibromyalgia Haven

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