My Mom’s Story of Fibromyalgia in the 1990s

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This is my mom’s story of her onset of fibromyalgia in the 1990s and how she was diagnosed and treated during that time.

My mom's story of fibromyalgia in the 1990s #beingfibromom #fibrostory #beingfibromom

Sheila's story of a #fibromyalgia diagnosis in the 1990s. #beingfibromom #youarenotalone Click To Tweet

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My Mom, Sheila

My mom is pretty amazing. And not just because of her impressive qualities such as entrepreneur (she was the first female to own a printing company in South Carolina), leadership skills as a top manager for IHG reservation center, project/event organization abilities, imagination talents, and more. More relevant to this topic, she is amazing because of how far she has come with her fibromyalgia. She’s come a long way, and her perseverance and determination to conquer this relatively unknown diagnosis are inspiring.

This week is my mom’s birthday, and I’d like to share the story of her journey with fibromyalgia. A few years ago, I asked her to write a brief summary of her life with fibromyalgia – from onset to now. Here are her words (edited by me, approved by her).

My parents and me at the Apple House in Front Royal, VA
April 2013: My parents and me at the Apple House in Front Royal, Virginia. If you’re ever on I-66 and pass signs for the Apple House – stop! It’s the best homemade food and apple doughnuts!

My Mom’s Story of Fibromyalgia in the 1990s

In 1996 I was in an accident that resulted in me experiencing symptoms such as sensitivity to lights and the sun to the point of needing sunglasses, skin hurting to the touch of certain materials, muscles aches in every part of the body, and, the primary one: the inability to sleep more than a couple of hours each night leading to increased pain during the day.

After repeated examinations by various doctors, I was told the same thing – nothing could be found as the root cause of my symptoms, and nothing seemed to be wrong with me. A majority of those doctors came to the same conclusion: it was emotional and/or physiological. In other words: it was all in my head. I felt helpless, lost, and alone.

Eventually, I was referred to a rheumatologist, and he diagnosed me with Fibromyalgia (FM). This was a time that fibromyalgia was ‘new’ to the physicians’ world, and there was still a lot to be learned about this condition, but he was convinced this was the cause of my symptoms. Relief washed over me, and my emotions were overwhelming.
I could finally breathe as I knew this was not just in my head.

My mom's story of fibromyalgia in the 1990s #beingfibromom #fibrostory #beingfibromom
My mom and me a few years after her fibromyalgia diagnosis.

My symptoms were recognized by a physician which meant treatment could begin; though many of them would be trial and error seeing how my rheumatologist was still researching the condition. It would be a learning process for him, my family, and me.

Over the next five years, I took different medicines and recorded how I felt physically and emotionally with each one. During one meeting with a doctor, I was given St. John’s Wort and was provided with some relief. Getting back to my ‘normal’ life as possible!

When FM was discovered to have caused trigger points, 18 to be exact, I learned I had 16 of them. This was disheartening, but at least my doctor had more reaffirmation that he had diagnosed me correctly, and was administering the correct medications.

In the last few years, my doctor and I have discussed my progress and my reactions to the most recent medication. Then we would decide if switching to the newest medication that has proven effective in patients with FM. I have changed medications several times, but currently, I have found that Lyrica, in addition to a CPAC, is the most effective for me. I experience less pain and more infrequent mood swings. Though my body is still impacted by a change in the weather such as rainy, cold, or cloudy.

There have been many ups and downs, but the ups are more frequent than the downs nowadays. As more awareness is being made about fibromyalgia, the more understanding my family, particularly my children, are of my condition. Overall, I’m very happy and satisfied with the progress I have made over the last 18 years.

Present: My mom and me with my kiddos and nephew.

Incredible Journey!

Pretty incredible, isn’t she? I knew she was strong but didn’t fully appreciate her strength until I experienced the same symptoms, and also went years before being diagnosed.

I am the most like her and am grateful for her. My mom is my role model, inspiration, and light when it is dark. Though we tend to bump heads at times, it is only because we want to help the other, and have the sincerest intentions.
So this week we not only celebrate my mom’s birthday, but we celebrate her strength and courage! I pray to stay

steady, true, strong, and courageous just as she was no matter how dark her days may have been at times. They do get dark, as I now know, and it takes only the bravest of souls to push through those times. I am blessed to have been given my mom’s strength.

Happy birthday, mom! I love you dearly.

Brandi

Hi, I’m Brandi, the writer and creator of Being Fibro Mom and My Fibro Journal. Aside from my work on Being Fibro Mom, I run a group called Fibro Parenting on Facebook. I've been writing for the Fibromyalgia Magazine since 2016 and recently became the Secretary and Fibro & Families program director for International Support Fibromyalgia Network. Facebook-+-Twitter-+-Instagram

4 thoughts on “My Mom’s Story of Fibromyalgia in the 1990s

  • April 1, 2020 at 9:14 am
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    Thank you for the story of your mother and fibromyalgia. I hope that she has a wonderful birthday and that you and your family are well.

    I was diagnosed with fibromyalgia in the 1990’s as well. I was in a car accident. I did go to PT but it never was able to figure out why a lot of what I was experiencing was happening. It took a few years but finally one of the many doctors I went to stated that it was fibromyalgia and I had it a second and third and fourth confirmation by other doctors. I have not taken medications. Not because I do not want to but because I have been sensitive to medications. I was able to “manage” it for quite some time. Then as always life is happening and well I guess things got overwhelming. Things are better and self care is very important to me now.

    Reply
    • April 6, 2020 at 2:16 pm
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      Hi, Maureen, thank you for reading my mom’s story and sharing your story as well. I understand your sensitivity to medications. I have the same issue and have since found an effective natural remedy plan for managing my symptoms. You can find that plan in this article – click here. Self-care is essential for anyone especially those living with chronic conditions. Gentle hugs, Brandi

      Reply
  • April 1, 2020 at 2:39 pm
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    Thank you for the birthday wish and for the story. Many that have FM may think going thru different medicines that their pain will never end but there’s a silver lining and only their own trial and errors will get them to the right place of comfort.

    Reply
    • April 6, 2020 at 2:17 pm
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      Thank you, mom, for your encouragement. I love you

      Reply

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