I Was Diagnosed With Fibromyalgia

By Steff Di Pardo

3 min read

For those who may not know, Fibromyalgia is a chronic condition that causes widespread pain, fatigue, sleep issues, and many other symptoms.

Fibromyalgia has been a question mark in my life for a few years, but a large question mark within the last year. I was told for years that I “might” have fibromyalgia, but no one would give me the answer I needed.

I started experiencing new pain

Having had ankylosing spondylitis for 4 years by then, I thought I was familiar with my pain and how it manifested in my body. In September 2021, I started experiencing something new.

I had gotten used to a certain level of pain in my body, and I knew what flares of AS were like. The pain I was experiencing was nothing like the AS pain I had experienced for the past 4 years.

I started to feel this new pain when I was busy the day before, I would always feel it after I had done something significant, possibly pushing my body too hard.

The symptoms I was experiencing

Now, what were the symptoms I was experiencing? Migraines. Burning, aching pain in my forearms all the way to my fingers. Sometimes my calves and shins felt like they were on fire.

This was nothing like the pain I’d had before. It was almost unbearable. I didn’t know what to do other than lie in the dark. Light made me nauseous and made the right side of my head hurt even more.

It was even hard to hold my phone. Texting hurt my fingers and wrists. I was scared.

I told my doctors

First, I told my family doctor about my pain, I told her that I wanted to be referred to a pain clinic, as a friend had told me that they were diagnosed with fibromyalgia through one.

My pain clinic appointment was in February 2022, and I was told I didn’t meet the criteria, and that they couldn’t do anything for me.

My rheumatologist referred me to a neurologist with the recommendation of requesting an EMG. I saw the Neurologist in March, but he didn’t think it had anything to do with him, but he still requested a brain MRI and an EMG as I had mentioned the fear of MS symptoms.

Everything came back normal from these tests, which was great, but I was still wondering what was going on.

Then, I saw my rheumatologist

In May, I saw my rheumatologist. I love him. He always listens to me and my concerns, and I appreciate that so much.

When I saw the resident doctor first, she read the note from the pain clinic to me. She told me it said I “met the criteria” for fibromyalgia. I couldn’t believe it.

I was told in person that I didn’t have it and that I’d have to go back to my family doctor and rheumatologist for the pain I was having.

My rheumatologist and resident doctor both agreed that from all of the tests I’d had, I could be diagnosed with fibromyalgia.

I felt so relieved

Finally, my new pain had a name! It took what feels like forever to get the diagnosis, but I finally had it!

We made a plan to increase my Pregabalin dose to see if it helped with flares and pain, and so far it has!

I’m not so pleased it took so long for doctors to listen and get tests, but I’m so thankful for finally putting a name to it.

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Lisa4Life Member
 did the fibromyalgia come on after having C by chance? I ask because I have had fibromyalgia but after C many new things at the same time started...a new kind of pain, AS, Ledderhose disease...I don't know if it was coincidence or not but the pain now takes me all the way down...expanded fibromyalgia symptoms, lower back pain so bad I can hardly move etc....just since being hospitalized with C for a couple of weeks in May 2021. All of these new things started developing about 6-7 months later, with another jump in the level 3 months ago.
CommunityMember42-aks Member
My experience has been almost identical to yours have two rheumatologists confirm AS & two dismiss it which has been extremely frustrating. I've only been offered one biologic which I used faithfully for 1year but it did not give pain relief. I was never offered any alternative but somewhat dismissed as a patient. Some three years later after experiencing growing widespread muscle & tendon pain throughout shoulders, hips, ribs, neck and even my eyes a diagnosis of fibromyalgia was added. Moderate exertion typically brings on migraines, light sensitivity with extreme fatigue that can last for days & weeks. The only pain help has been going to an understanding pain clinic doctor. I continue to eat a wholesome diet, use supplements and stay generally active on our farm which gets harder with aging but seems to be a must with this disease. As you said at least there is some comfort in having more serious diseases ruled out although AS, migraines & fibromyalgia are certainly life altering. Hang in there and thank you for sharing it helps to hear we're not along or attention seekers.
Lisa Marie Basile Moderator & Contributor
It's so affirming to get an answer (although it sucks that it takes SO long and that AS always complicates things) and to get a pathway toward understanding and management. How is the medicine working (yet)? Those are also mostly my symptoms as well when I talked to my doc about Fibro - the burning skin especially, and the migraines. And sensory bigtime issues.
James Hollens Moderator & Contributor
Hi <inline-mention username="Steff Di Pardo" user-id="2397373"/> , Sorry to hear that you've been diagnosed with a new condition, but glad to hear that you finally have some answers to what was going on! How have you been finding the new treatment? Thank you for sharing this experience, I think it will be very helpful to others experiencing the same thing and some motivation to push for some answers! Wishing you all the best, James (Community Member)