Last Updated on August 13, 2022 by melissanreynolds
Is fibromyalgia a real diagnosis? This is a question I find myself asking, about 15 years into my journey post-diagnosis.
Let’s make something clear. I am in no way saying fibromyalgia isn’t real. Or that the symptoms are not real or life changing.
They are. Chronic pain, chronic fatigue, insomnia and all of the other attendant symptoms can be debilitating. Even “mild” symptoms impact ones life greatly.
In this post I want to share the problem with misdiagnosis, what can be mistaken for fibromyalgia and mimic it, and my experience with diagnoses.
Can You Be Wrongly Diagnosed with Fibromyalgia?
The problem with fibromyalgia is two-fold. Not only can it be misdiagnosed – another condition is causing the symptoms but it is labelled as fibromyalgia. It can also be missed – not diagnosed when it is the condition in question.
In a 2019 study they found, “physicians failed to correctly diagnose 60 (49.6 percent) of those who met the ACR criteria for fibromyalgia. They also incorrectly diagnosed 43 individuals (11.4 percent) with the condition even though they didn’t meet the ACR criteria”.”
What Are Some Common Misdiagnoses of Fibromyalgia?
There are several conditions people diagnosed with fibromyalgia may have instead of, or as well as. There are a few conditions that can mimic fibromyalgia:
- Thyroid conditions
- Gluten sensitivity
- Lyme disease
- Chronic fatigue syndrome
- Myofascial pain syndrome
- Multiple sclerosis
Read more about other conditions mistaken for fibromyalgia here.
Then there is the combination of other conditions that can look like it adds up to fibromyalgia. As an example (from myself) myofascial pain syndrome and endometriosis can add up to look like widespread pain, with fatigue and headaches.
What Happens if You are Diagnosed with Fibromyalgia?
Often, you get the diagnosis and then doctors stop looking. They treat or ignore symptoms. At best your medical team work with you and help you create a good whole of life management plan. At worst, you are left to manage these symptoms alone and experience a lot of gas lighting and little support.
My Experience with Fibromyalgia Diagnosis and Questioning it
My pain began as a young teenager. I would get lower arm pain, which the doctor called tendonitis. They gave me a wrist splint and sent me on my way. At around 17 years old, when I began university, I would get burning pain in my shoulders.
By the time I got home at the end of the day, I would be in tears from the pain. I was sent to a few specialists to be tested for things like carpal tunnel syndrome. I got the distinct impression they thought I was making it up because my pain intensity changed and the place of the pain I experienced changed.
During this time I experienced poor quality sleep and insomnia.
At 21 I caught a bad illness that required antibiotics to clear and left me with chronic fatigue.
I was diagnosed with fibromyalgia at around 24 years old, when I took an article about fibromyalgia (sent to me from a friend in London) to the doctor. They looked at the article, knew my history, checked my tender points, and said it was fibromyalgia. But did nothing new.
At that point I was on amitriptyline for the sleep issues. And had a few pain killers that did not really help.
When My Chronic Pain Story Changed
I was 25 years old, Extremely burnt out from trying to live a normal life with chronic pain, chronic fatigue, insomnia, poor quality sleep and brain fog. My skin was so dry. I was sick constantly. After an operation for an abnormal smear, I decided I was done trying to keep going like that.
I moved to a warmer city with my family and reduced my work hours to 27.5 hours. This was the beginning of my journey to better wellness.
A physiotherapist got on top of the trigger points (without my knowing yet their importance). I rested more. Exercised less (I had previously pushed myself too hard and made the trigger points and pain worse). And started researching and sharing my journey through this blog.
Eventually I realised that this pain that plagued me all day, every day was Myofascial Pain Syndrome. It was trigger points – not random, unknown pain in my muscles. It was physical knots in the muscles that could be treated (however temporarily).
In the past few months I have also been diagnosed with Interstitial Cystitis and probable Endometriosis. The way to be formally diagnosed is through an operation and my doctor felt the costs were not worth the benefits until we had tried a few medicinal options to get through my periods better.
I also just found out that I was actually diagnosed with Chronic Fatigue Syndrome first (and was never told)!
This Has Led to My New Way of Thinking About Fibromyalgia Diagnosis
My list of diagnoses/conditions is much longer than originally anticipated:
- Myofascial pain syndrome (trigger points)
- Endometriosis (the low back pain and pelvic/abdomen pain)
- Interstitial cystitis (which could be related to either of the above conditions)
- Chronic fatigue syndrome (reduced as I improved the above conditions, but still present)
- Insomnia (now fairly well treated)
- Iron deficiency (now treated and likely caused by the undiagnosed endometriosis)
Having more diagnoses sounds scary but actually it’s been a blessing in disguise. With the right words I can create the best symptom management plans possible.
Summing Up My Thoughts About Fibromyalgia as a Real Diagnosis
Managing pain well, no matter the cause, helps manage fatigue better. And improve our quality of life. So at the end of the day, I will keep managing symptoms.
But having the best words to research has helped me immeasurably. I have management plans for each condition. Creating a specific treatment plan for the severe headaches I experienced has all but eliminated them. I know how to prevent them and am ready for if an attack occurs.
Treating the pain of my menstruation will impact those four days of severe pain, but also the fatigue hangover I experience for days after. Not to mention the additional pain during the month that I had always chalked up to fibromyalgia pain and therefore ignored!
Continuing to work on trigger points and trying to avoid perpetuating factors is ongoing work. Knowing what they are has helped more than I can say in terms of treating them appropriately.
I don’t know if that means that no-one has “only” fibromyalgia. Or if everyone has some collection of other conditions. But managing symptoms appropriately sometimes requires other words.
What do you think? Have you ever considered this?