What’s Wrong with Me? Fibromyalgia Diagnosis-Part 2

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

If you haven’t read What’s Wrong With Me? Fibromyalgia Diagnosis-Part 1, please click to read first.

Me, in bed looking ill. The top of my head is covered with a cold, wet teal washcloth. I'm wearing glasses and hoody sweatshirt that says GRANDVILLE.

The path to figuring out what was going on was not straightforward. Unfortunately, both the doctors and I only ever looked at one issue at a time. When what was needed, was to look at my whole self (mind and body)to figure out WHAT’s WRONG WITH ME? #fibromyalgia #newdiagnosis #ThisIsFibro

Quick Fibromyalgia Diagnosis

First off, bless my doctor. My husband and I had fairly recently moved to a small town, bordering on the “boonies” of Michigan. I had just switched to having him as my general practitioner the year before the roving pain had begun.

After my recent diagnosis of ADD in the spring of 2018 just before our trip out to California, here I was, once again, sitting in his office in tears. I could tell that he thought I was just a stressed-out mess, but I tried my best to explain that this is all something new. He brought up the term Fibromyalgia, but he admitted he didn’t know much about it. I hadn’t even heard the term before.

He ordered thorough blood work and an appointment with an immunologist. All tests came up with normal results-no issues. My fears of the Big-C were alleviated.

Teal line drawing of a lotus on white

In True Teacher-Fashion

Being the teacher and learner, I am, I began to research all things Fibromyalgia. I found some good information and some that were pretty detrimental. One really helpful website has been fedupwithfatigue.com by Donna, who explains her own journey-first with Fibromyalgia and then with the additional diagnosis of Lyme Disease. She has spent a lot of time researching and then sharing with fairly impartial information that is backed up by dependable research. It was her Fibro 101 page that connected me to all sorts of helpful information.

Me, brown hair and glasses, peaking out from the novel THE SEVENTH WISH which I was reading to my 6th grade  Reading Workshop classes.

Saved Up Sick Days

Meanwhile, things at work had gotten impossible. On December 7, 2018, I called in sick. This was not a usual thing for me. And in fact, after officially announcing my retirement for May 31, 2019, I planned on getting a nice lump sum of money for all my sick days.

That wasn’t meant to be. After a weekend in bed, I couldn’t go in on Monday, then Tuesday, then Wednesday… I contacted my personnel director who let me know that I could go on long-term leave. “You have enough days saved up to cover the rest of the year and some.”

Teal line drawing of a lotus on white

Long-term Leave Turns Permanent

So, after my GP wrote a letter, I began what I thought would be a month or two of self care before returning to teaching. But the days came and went. I spent a lot of time in bed. I hurt. I was exhausted.

Fortunately, I was invited to a yoga Breathwork session in a nearby town. The yoga studio was friendly, and the owner/main teacher focused her classes on healing and growing. I began to slowly learn about breathing techniques and slow, focused, healing movement.

Yet, at the end of April, it was evident I couldn’t go back. Even if I was doing well, the hour drive there and back and the intense energy output the 8 hour day required, wouldn’t allow me to do the self-care protocol that was slowly helping me to have better days. So, with my 55th birthday that May and 32-years under my belt, I filed for retirement, letting go the goal of teaching for years to come.

Teaching Benefits

During the months I had off, I viewed my job as one of self-care and healing. I had an appointment to meet with a pain specialist in the city health system an hour away. However, when I looked up her focus, it only talked about chronic pain due to car accidents and the like. I didn’t feel like she would be a good fit.

So, I searched the word fibromyalgia on the hospital’s website. One article came up. As I read it, Fibromyalgia Myths and Facts, I recognized the health provider’s name. I had taught all three of his wonderful children and worked with his wife for years!

Teal line drawing of a lotus on white

Social Connections

Being I was friends with his wife on Facebook, I messaged her right away. Soon after, he responded. He told me of a multi-dimensional chronic pain program at the rehabilitation program in the city. He explained that I would be interviewed for 3-4 hours to determine if I had Fibromyalgia. Then, if accepted, it would be a 10-week program with 2-3 4-6 hour sessions per week. I would meet with a pain specialist medical doctor, a pain psychologist, a physical therapy, and an occupational therapist.

Naively, I thought that I would get in within a couple of weeks. Then, go through 10-weeks of training and get back to teaching. The program, however, was in high demand. (Not surprising since now I know that 20% of Americans live with chronic pain.) So, I was able to start the program in June.

Good-bye, Not On My Terms

This was the hardest thing I had to do-give up control of my classroom after 32-years of teaching. As desperate as I had become, I knew it was what I had to do. Luckily, a wonderful, young teacher who had just spent the first half of the year teaching 6th grade in our district was available for the long term job.

The way I ended my teaching career was not at all the way that I had planned. In the end, I did feel good that I had passed on all of my classroom set up, my lesson plans and created materials, taught her how to teach with technology (which has ended up being very helpful the last two years), and donated to several classrooms my classroom library of 2, 500 books.

Teal line drawing of a lotus on white

What has your journey been to discover what’s wrong? The more we share with one another, I believe the better the process of diagnosis will get for others. The fact that doctors tend to treat one issue at a time not looking at the whole person is one that is slowly changing for the better. More and more the mind/body connection is being acknowledged.





teal line drawn waterlily with teal lettering of the title and motto

6 thoughts on “What’s Wrong with Me? Fibromyalgia Diagnosis-Part 2

  • March 5, 2021 at 11:33 pm
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    Certainly one of the most devastating parts of chronic illness is having to give up the things we love. When you mentioned calling in sick and then being unable to go in again, I was nodding my head and thinking that I know that well. You hit the wall and cannot rally for one more step. It is deeply disturbing and so hard to process. I am still grieving for the things I’ve lost as well as some people I thought would always be there. I miss singing and entertaining and being able to go to the beach or go for a walk or dancing the most, and as for people, there are many, but the most hurtful one is my sister. She cut me out in late 2016 because she was sick of reading about my never-ending health issues, and that is exactly how she phrased it in her last text to me in Feb 2018. We haven’t spoken since. Illness does not just rob you of your passions. It also steals the joy from your relationships with loved ones.

    Reply
    • March 7, 2021 at 8:04 am
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      One of the hardest things has been growing distant to those we were most connected to before chronic illness hit. Many can’t fathom what it’s like, and it just makes them so uncomfortable to hear about it. The hardest is when that comes from family. Sending you so much love.

      Reply
  • May 11, 2021 at 6:02 am
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    I am also a retired educator. Looking back, I too had years of signals that went unnoticed/undiagnosed. The hardest part about my career ending was HR determining that my requested accommodations described a person who was no longer able to be a school administrator. Just like that, no accommodations and no job. It was devastating, but I soon realized they were right. I was much too sick to be working a job that required 50-60 hours a week without brain fog and that was physically demanding. I have since learned to pace myself and I can accomplish huge tasks, it just takes much, much longer. I’m learning to just live in the moment and celebrate the small victories. Gentle hugs!

    Reply
    • May 11, 2021 at 7:26 am
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      Yes, same here. Plus, I need to spend much of my day in self care to manage symptoms. Hoping eventually that will lessen- brain rewiring focus.

      I feel such a need for teachers to have stress management training and a way to do some self care during the day.

      Reply
  • May 12, 2021 at 9:52 am
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    32 years of teaching, that is a huge achievement. And yet, with something like this, we often focus on the ending. On the negative, the reasons we had to give it up (or were let go), the loss of everything that we were. I’ll admit I cried reading this so I’m not too sure what to say. My head’s a bit of a mess lately and a lot of this resonated with me in certain ways. You’re right about how who you are is tied to work and your job, and losing that is incredibly difficult. Thank you for sharing your story, Katie. ???

    Caz xx

    Reply
    • May 12, 2021 at 12:55 pm
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      Cuz thank you so much for your heartfelt message. I’m sorry that you’re having some hard times right now. I have always found you very uplifting and comforting in your comments and posts. What you are doing now through your writing and you’re connecting with others is very important. I miss teaching for sure. But a lot of the grieving is past. If I could go back to be doing what I was doing I’m not sure that I would. Because I was hurting myself. I’ve learned so much in this last 3 years. And now I’m finding some new purpose in advocating and sharing my story. Keep up the good work, Caz???

      Reply

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