Meet the Warriors

Fighting Misinformation – Letia’s Story

fibromyalgia misdiagnosis

Recently, TheFibroWarriors.com expanded our community by creating a Facebook group.

The group has one simple focus: make everyone welcome to share their story, confide in Fibro Warriors who understand exactly how they feel, and never again be afraid to express their true feelings.

Fibromyalgia is a lonely ailment. It is sometimes very difficult to explain to people who do not suffer from fibromyalgia what it’s like to live in our shoes.

Between the people who look down on us and make us feel like it’s all in our heads, and our own doubts and complexes – you know the ones:

Am I whining? Are people getting tired of hearing me complain? My loved ones probably think I just want attention. How can I explain that yesterday my back hurt and today my wrists aren’t working?

One of our early group members Letia has had the courage to sit down and share her story with me.

Thank you Letia for finding it in you to express your feelings, hopes and questions so freely.

It will undoubtedly help other Fibro Warriors find their own voice and their place in the World.

Letia, thank you for sharing your story! Can you tell us a little bit more about yourself?

I live with my husband, with whom I’ve been with for 17 years. We also have a roommate, whom we’ve known for about 5 years.

And lastly, we share our home my PTSD service cat.  I live in Seattle, Washington but I was born in Hawaii.

Why do you think you first felt symptoms of fibromyalgia?

I got diagnosed with Fibromyalgia in 2012. I had been having widespread pain for a while longer than that though.

I had a bad fall on the job in 2009, which disabled me. I was always in pain and the pain only got worse.

How were you diagnosed?

I got an appointment with the pain clinic in 2012. They diagnosed me with fibromyalgia after having all 18 tender points be sore to the touch.

I had heard of fibromyalgia before then but never knew that much about it. They told me I got a diagnosis based on have 18 out of 18 tender points react on my body.

How did your loved ones react to your diagnosis?

I was always just thought of as a whiner by my friends, because they had no clue what having pain 24/7, 365 days a year is like.

My real family has nothing to do with me because they feel what I have is contagious!

I had invited my aunt and my cousin to a church function once and my cousin said out loud, “Don’t sit too close, I don’t want to get that hypermyalgia!”

I thought to myself, “How ignorant could anyone be?” I corrected my cousin and said, “It’s called Fibromyalgia, and it’s not something you can catch from me.  It’s an acquired illness.”

Are you telling me that people in your life think that they catch fibromyalgia by being in contact with a Fibro Warrior?

My family thinks I’m contagious and won’t come around me. I’m diseased in their eyes.

They are very ignorant when it comes to fibromyalgia. My cousin still thinks I have hypermyalgia instead of fibromyalgia.

I correct her and let her know it’s not transmitted through bodily contact, but it does not seem to make a difference.

That is terrible! Has this attitude changed your perspective?

I don’t trust many people because after living with a chronic illness, I have become protected and guarded of myself. I have lost too many people who claimed to be my friend and I have been gossiped about more times than I care to talk about.

Does that mean you are done talking about fibromyalgia?

No, I post on my Facebook timeline about Fibromyalgia because I feel awareness and education is what society needs.

Support definitely makes a world of difference!

No one should have to go through an illness alone. I have my husband, and he is understanding now.

He used to say I faked my pain to get out of doing certain favors or tasks he requested.

After seeing me go from doctor to doctor, trying medication after medication, and seeing all the side effects from the medications, he believes I really do have a chronic illness.

Have you broken all ties with your “friends”?

I keep a small number of friends now, simply because the people who really know me and understand that I struggle have stayed by my side, even when I was in too much pain to talk. I keep my circle small and always will.

How do you manage the pain on a daily basis?

Right now, I take muscle relaxers and an opiate pain medicine that I’m being weaned off. I’m between Primary Care Physicians, so the weaning has stayed at three pills a day when I was at four before.

What are your main triggers? What brings about flare-ups?

Bad weather really triggers pain for me, and like many, doing too much activity. I have a hard time with simple chores, and sometimes even being intimate with my spouse is difficult because of the pain.

Why have you decided to come forth and share your story?

I’m hoping by sharing my story to spread awareness of this disease. Men, children and women can get it at any time. No one is immune.

I feel that with awareness, maybe in the future research can be done to find a cure or a better treatment for fibromyalgia.

Do you have any advice for Fibro Warriors who have been recently diagnosed?

The best advice I have for newly diagnosed people is to educate yourself to all aspects of this illness, because your life will change, and not necessarily in an expected way. The more you know, the better prepared you will be.

Thank you so much for sharing story Letia!
Thanks for listening!

Again, a big thank you to Letia for sharing her story. I know it must not have been easy.

Let’s all make sure we follow Letia’s advice, and spread awareness around us.

It would be fantastic if you, too, would share your story with your fellow Fibro Warriors.

Fibromyalgia can be isolating, and developing a community we can trust is essential to the advancement of public awareness and, maybe one day, research.

You can email me at [email protected] for a list of questions you can answer. You may choose to remain anonymous if it makes you more comfortable, but know that no matter what, we are in this together, and we are here to lift one another up, nothing else.

Keep up the good fight, fellow Fibro Warriors! We got this!

About the author

Servanne Edlund

Servanne Edlund

Narcolepsy. Ankylosing spondylitis. Fibromyalgia. The perfect trifecta to sleep through life! As a mom of two teenagers, I need to keep going - so I have found coping mechanisms to overcome the hurdles placed on my path.

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