Getting Answers With a Fibromyalgia Diagnosis
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Getting Answers With a Fibromyalgia Diagnosis

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Have you ever felt like something was wrong with you, but you don’t really know what?  A few years ago, I felt this same way. After many tests and months of searching, I was finally given a fibromyalgia diagnosis.

Let me guess, you’re exhausted, like ALL the time. You probably have more than the normal aches and pains, and you can’t concentrate or function like you used to.  Maybe your digestive system is out of whack or you start getting these weird rashes for no apparent reason at all. And try explaining them to a doctor!  “I don’t really feel good, but I can’t explain why,” usually gets a fabulous response…

If you have any of these symptoms and many more, you’re not alone.  In this post, I’m sharing my fibromyalgia diagnosis story. Along with that, I have some great tips that will help if you or someone you love thinks they have fibromyalgia.

Getting Answers With a Fibromyalgia Diagnosis
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Before My Fibromyalgia Diagnosis

Fourteen years ago, before I ever even heard of fibromyalgia, I was diagnosed with cancer.  It was an anxious and INSANE time for me and my family! I had major surgery and 6 months of chemotherapy after that. God blessed my family and doctors, and thankfully I’ve been cancer-free since.

At this point, I was so thankful to have this second chance at life. Because of that, it took me a few years to realize that I wasn’t exactly 100% back to my old normal self.

Early Symptoms of Fibromyalgia

The first symptom I noticed was “brain fog”.   I couldn’t focus or concentrate at all! My thoughts would drift off mid-sentence, which made conversations so much fun!  Chris said it was almost like I had developed adult ADHD.

A few years later, the joints in my hands and fingers began hurting.  There were times I could barely grip a pencil. My handwriting has never been good, but with the joint pain, it’s now atrocious!

And a few years after that, I was diagnosed with asthma! This asthma was caused by allergies. It is sometimes so severe, that I go into pneumonia. Asthma and breathing issues are often an overlooked symptom of a fibromyalgia diagnosis. All of these signs were there, but I had no idea what was wrong with me. I simply wanted to be fixed lol.

Beginning My Fibromyalgia Diagnosis Journey

My dad was diagnosed with rheumatoid arthritis several years ago. Since some of my symptoms were similar to those with RA, my doctor ordered bloodwork.  The numbers came back high for an autoimmune disorder. So, they sent me to my dad’s rheumatologist.

First Fibromyalgia Diagnosis Doctor

At my first appointment, the doctor talked to me and looked over my bloodwork. Because of my symptoms and high ANA levels, he ordered more tests. He also sent me immediately for x-rays. Now we’re getting somewhere! Or at least I thought…

My second appointment ended as a frustrating disappointment. For starters, the doctor came in and said that my x-rays were normal, without going into any detail. Secondly, he didn’t ask about any other symptoms I was having.  Autoimmune disorders often mimic one another and have overlapping symptoms. This makes it VERY hard to pinpoint which disorder it might be.  

But that’s not even close to what he did. After mentioning my x-rays, he said, “Well, you don’t have RA! It must have been a false positive.” In about 5 minutes, he was back out the door, and I was left without answers.

More Waiting for a Diagnosis

After that disappointment, I waited again. A few months more of waiting and my symptoms didn’t improve. So I went back to my family doctor. We met and he let me do the talking. Of course I spilled it all out! At the end of my appointment he scheduled me for more intensive bloodwork. I’m very thankful he was willing to take the time and look for answers that eventually led to my fibromyalgia diagnosis.

A week later I went back for results.  My autoimmune numbers did come back high, yet again.  With this round of bloodwork, they also looked more into WHICH autoimmune disorder I might possibly have.

Since a few different disorders were showing up as a possibility, we decided I should go back to a rheumatologist.  My only request was that I see someone different than last time! My doctor had a highly regarded specialist in mind, so the office set me up with an appointment in a couple of months.

Finally, a Fibromyalgia Diagnosis!

During this appointment, the doctor listened to my ENTIRE story. He asked a few questions for clarification, but most of the time, he let me talk.  When I finished talking he began the physical exam. Of course, he did the standard stuff like listening to my heart. But after that, he began putting pressure on different points of my body.  The back of my neck, lower back, knees, and elbows just to name a few. He would also have me bend or twist sometimes while applying pressure.

And, to my surprise, most of them HURT!  It wasn’t extremely horrible pain or anything like that, but they did hurt far more than I expect them to.  This was turning out to be an extremely strange doctor’s visit!

Getting Answers With a Fibromyalgia Diagnosis
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Confirming Fibromyalgia

The doctor FINALLY stopped prodding me and sat back down in his chair.  “What you have is fibromyalgia. It is literally ‘a pain,’” he finished and looked at me.  I just sat and stared at him, not really knowing what to say. I had read about fibromyalgia during my internet self-diagnosis research. But I didn’t really know what it was.

He continued by explaining what it was and why he was giving me a fibromyalgia diagnosis.  He showed me my labwork results and compared them to someone with lupus or RA.   My numbers were elevated, but not nearly as high as those with a confirmed autoimmune. He continued explaining that with my developing symptoms, along with my bloodwork, fibromyalgia is the likely result.

Treatment for Fibromyalgia

This new doctor had two recommendations for his fibromyalgia patients: sleep and exercise.  I was already on sleep medicine to help with migraines. He also said any exercise was good, but he recommended swimming to his fibromyalgia patients. Swimming is low impact, easy on the joints, and still gives a great workout.  

Before I left he said he would send my results to my family doctor. He also told me to call if I needed anything else from him. So, I finally had the answers!  Sort of…

Fibromyalgia Diagnosis Research

As soon as I got home that day, I started researching a fibromyalgia diagnosis. There’s a lot of info out there, and not all of it is good!

First off, fibromyalgia has many different symptoms and can affect almost any part of a person’s body. Then, there’s the fact that fibro presents differently for each person that has it.  Some people only have pressure point pain and chronic fatigue, while others can have cognitive issues, digestive problems, difficulty breathing, skin sensitivities (rashes, itching, swelling…), and joint pain.  Just to name a few symptoms.

Also, since fibromyalgia mimics the symptoms of actual autoimmune disorders, and there are no conclusive lab tests, it is extremely difficult to diagnose.  Combine that with parts of the medical community believing that fibromyalgia doesn’t exist (like anyone would fantasizing about these symptoms), it’s EXTREMELY tricky to diagnose!

Another mystery surrounding fibromyalgia is the cause.  Although many more parts of the medical community are beginning to acknowledge that fibromyalgia IS real, no one is 100% sure what causes it.  

Probable Causes

There are a few suspected causes of fibromyalgia.  One of these is genetics. If someone else in your family has it, then you are more likely to have a fibromyalgia diagnosis at some point.  Fibromyalgia and autoimmune disorders seem to go hand in hand for many sufferers.

Previous physical or emotional trauma is often thought to be a cause of fibromyalgia.  A car wreck, major surgery, or traumatic life events are thought to trigger fibromyalgia in some people.  I feel that having cancer, surgery, and chemo were MAJOR physical and emotional traumas for me!  The symptoms I have didn’t start until a few years after cancer.

If You Think You Have Fibromyalgia

You’re probably reading this post because you have some questions about fibromyalgia. Maybe you have a fibromyalgia diagnosis already. Or you could simply be looking for answers to explain your symptoms. Here are a few tips that can help.

  • Do your own research. There are thousands of health websites that will give you great information.
  • Don’t believe everything you read on the internet! It’s a great resource, but you can find some scary stuff when researching symptoms. Plus, people can post anything they want on the internet. Just be careful.
  • Be your own advocate. Ask your doctor plenty of questions and take notes if needed.
  • Push for answers. If you don’t think you’re getting answers, ask for more tests. And don’t feel bad about asking for a second opinion. Doctors are professionals, and should be treated with respect. But you’re the patient, and your health should be the number 1 priority.
  • Look for support. Hopefully you have close family and friends who are in your corner. There are also some awesome websites that offer support. The Mighty is an awesome resource for health conditions. Either way, find your people.

If you have any questions about fibromyalgia, or you’d like to share your story, I would LOVE to hear it!  Please comment below or message me…

Blessings,

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8 Comments

  • Phyllis Bartley

    I was told probably 35 yrs ago by my p.c. and a back Dr. that I had it. I’d never heard of it and no one seemed to know what to do with me. A few years later I decided to go to a rheumatologist and made the mistake of telling him what the other Dr.s had said. Without doing blood work, checking my joints, anything….he said fibromyalgia was psychosomatic. I drove home in tears, thinking I must be crazy and the pain was imagined. I never told anyone I’d been diagnosed, as it seemed to be the disorder of the day, I looked healthy, and no one would believe me anyway. When I was 15 I was diagnosed with “episodic rheumatoid arthritis”….now known as palindromic rheumatism. My aunt died from scleroderma. a cousin has it, another cousin died from lupus, my sister and son have lupus, and on and on. I’ve always described it as feeling like I’m coming down with the flu or recovering from it. I think the thing that helps the most is reading posts from people like you who know what’s it like to deal with the pain and Drs. Thank you so much for sharing your journey.

    • Christy Kinney

      Thank you for reading and sharing your story! It’s crazy to me that many people dismiss those of us with these types of disorders without getting more info or research. I do sometimes joke that I “have fibro” mostly because other people think it’s a joke. I’m thankful to have a strong support system that listens and is willing to help 😊

      • Phyllis Bartley

        I’m sure I’m not the only one who would tell you that reading posts like yours does so much for our emotional well being. Even after all these years I fight the idea that maybe fibromyalgia IS a psychosomatic disorder and I just need to try harder to ignore it. I never knew anyone who’d been diagnosed until about a year ago, when I found out a high school class mate has it. I have slowly ventured “out of the closet” and begun mentioning I’ve been diagnosed even though it’s almost embarrassing to do so. I don’t know if I will ever recover from the damage that rheumatologist caused so many years ago. So please, keep telling your story and providing support to people like me.

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