Wanting a Fibromyalgia Diagnosis? Here's Everything You Need to Know
Are you finding a journey to a fibromyalgia diagnosis confusing?
It sure can be! Living with chronic pain (and fibromyalgia, especially without a diagnosis) can feel like embarking on a winding journey, full of bumps and roadblocks. In the early stages, it might feel like your pain and symptoms are constantly getting in the way, but understanding them is really important.
In this article, we explain some of the hallmark (and lesser known) signs of fibromyalgia and walk you through the process of receiving that sometimes elusive milestone – a diagnosis.
What are usually the first signs of fibromyalgia?
Widespread pain
Persistent pain is the most obvious hallmark symptom of fibromyalgia. This ongoing pain (or chronic pain – check out our beginner's guide to chronic pain) can be felt in various parts of your body such as the neck, shoulders, back, and hips. The pain is not always the same – it may depend on the part of your body, the time of day, what's going on in your life (hello, flare-ups!) or whether you have had a bad night’s sleep. Yet, one thing is for sure, the pain will likely be having an impact on your daily activities.
Fatigue & sleep problems
Fibromyalgia can cause persistent physical or mental fatigue and disrupt your sleep patterns, including making you wake up throughout the night. These are two hallmark symptoms.
Even after a night's rest, you may still wake up feeling exhausted, this is referred to as non-restorative sleep. While some people experience insomnia, others find they battle more with daytime sleepiness. The symptoms and causes of fatigue are outlined in one of our other articles.
Cognitive difficulties & "fibro fog"
You’ve likely heard of this and probably experienced it in your day-to-day life. It's like encountering a thick fog on the road, impairing your cognition. You might struggle with remembering details, staying focused, and blocking out external distractions. And, unfortunately brain fog is a symptom of pain so that makes it a likely fibromyalgia symptom. One of our MoreGoodDays® coaches, Sonja says brain fog feels “like someone has filled your brain with mud.”
Abnormal sensations
You may notice changes in how sensitive you feel to things like touch, light, odors, sounds, changes in temperature, and pressure. It's as if activities that were once safe suddenly feel like a danger to your body, and it’s alerting you through intense discomfort. This hypersensitivity to external stimuli is a common symptom of fibro.
Mood & emotional changes
Do you sometimes feel snappy for no reason? Teary without much cause? Or irrationally afraid of things that in the past wouldn’t have bothered you? The constant pain and challenges can lead to mood swings, anxiety and depression (known as co-morbid conditions because they occur alongside fibromyalgia)2. Evidence suggests that people living with fibromyalgia who also experience post-traumatic stress disorder, depression or anxiety tend to have worse symptoms and reduced function than those with lower levels of depression and anxiety.
It's important to recognize these emotional shifts in the context of your overall wellbeing. While it may feel easy to downplay the effects of your pain on your mental health, if it’s impacting your quality of life, then it’s important to take it seriously and seek help.
Knowledge is power
Other signs & symptoms
While the first signs are the most common, there are other potential symptoms that are relevant and related to fibromyalgia.
Headaches, migraines & regional pain
You might encounter frequent headaches or migraines without any clear cause, or perhaps you only begin to recognize the types of activities that might lead to a headache later.
Other types of regional pain that may occur in people with fibromyalgia include stomach aches, dysmenorrhea (pain associated with menstruation), vulvodynia (pain of the vulva) or dysuria (painful urination in the absence of an infection).
Digestion issues
We know, no one really wants to talk about what goes on behind the closed toilet door but, you may be having symptoms such as abdominal pain, bloating, diarrhea, or constipation. It’s uncomfortable and unpleasant and, left unchecked can lead to further gut problems such as irritable bowel syndrome (IBS) which is commonly found in people with fibromyalgia1.
Stiffness, jaw & facial pain
Pain or stiffness, particularly in the morning is another common symptom that people living with fibromyalgia sometimes experience, with jaw and facial pain and stiffness being particularly common. You might find that it hinders your ability to open or close your mouth comfortably.
Changes in your nervous system
Given that fibromyalgia is considered a neurological condition, you may notice symptoms such as feeling dizzy, sensations of numbness or tingling, coordination difficulties with balance and gait, and urinary incontinence.
Other autonomic disturbances include blurred vision, xerostomia (dry mouth), reactions to cold temperatures and orthostatic hypotension (a sudden drop in blood pressure when you stand up).
After hearing all of these symptoms, it’s really easy to see how the rabbit hole of misdiagnosis can happen. Any of these symptoms in isolation may point in a different direction to fibromyalgia so it’s important to mention all the changes/symptoms you have been experiencing. You may have noticed one or many of the symptoms listed above but a clear picture of what is going on is important. And the tricky thing is that everyone is different so there is no one expected or required symptom, you may experience any number of them!
Diagnosis crossroads: How your doctor will investigate
The symptoms of fibromyalgia can often mask many other conditions (such as rheumatoid arthritis, joint hypermobility, lupus, and chronic fatigue syndrome) and diagnostic tests should be arranged to investigate other commonly associated medical conditions. Since fibromyalgia must ultimately be diagnosed by a medical doctor, let’s chat about the signs your diagnosing doctor will be looking for to confirm the diagnosis.
The most obvious symptoms used for diagnosis is persistent pain in multiple areas of the body. We’ve already said it's complicated but even a leading fibromyalgia researcher has described fibro pain as “diffuse or multifocal, often waxes and wanes, and is frequently migratory in nature”3. This basically says that your pain could feel really specific to a part of your body or more spread out, that it can come and go at different levels of pain, and that it will often move throughout your body.
Your body may have certain points that are more tender and sensitive to pressure than others – these are referred to as tender points. Commonly, tender points are symmetrical, present near your joints, and are often found at the base of the skull and neck, between the shoulder blades, and around your hips and knees4. The original diagnostic criteria required soft tissue tender points to help diagnose fibromyalgia. However sometimes tender points are not particularly helpful or completely accurate due to interaction with other conditions such as inflammation and also due to the lack of standardisation of pressure that needs to be applied. These days, tender point examination is just another tool that can be used to help make a diagnosis rather than a conclusive test on its own.
How is fibromyalgia diagnosed?
So, you’re ready to sit down with your GP, what do you need to know heading into the room? Let’s run through what typically happens once you mention the F word (not that one!) to your GP.
Medical history & physical examination
Your healthcare professional will usually begin by taking a comprehensive medical history. This includes discussing your symptoms, their duration, and their impact on your daily life. A physical assessment may also be conducted to evaluate tender points and assess other potential causes of your symptoms.
Keeping a record of your symptoms becomes your navigational tool on this part of the journey. Tracking your symptoms in detail, including their location, intensity, duration, and any patterns you've noticed, assists healthcare providers in understanding your unique experience. There are online tools which you may like to check out such as My Health Story. And in the words of Ginevra Liptan, author of The FibroManual: “Doctors love data!”.
Diagnostic criteria & guidelines used by medical practitioners
Doctors rely on established diagnostic criteria, such as the revised 2016 American College of Rheumatology (ACR) Criteria6. These criteria consider factors such as widespread pain, symptom severity and duration, and the absence of other underlying conditions.
Blood tests & imaging
As we mentioned, fibro does not always exist on its own. Blood tests and/or imaging can help to investigate other conditions that can coexist with fibromyalgia, particularly rheumatic diseases that are known to be commonly associated with fibromyalgia.
Collaboration between patient & healthcare team
The journey towards a fibromyalgia diagnosis involves collaboration between you and your healthcare team. Your team might just consist of your GP, but it may also look like a psychologist, a physiotherapist, and a rheumatologist. Mutual understanding is essential for an accurate diagnosis and putting together an effective management plan.
Next steps: the pathway forward
It can be really tricky to find support from the people in your life when they can’t see the pain you’re experiencing, and your symptoms are so complicated. Nevertheless, support from your loved ones is vital – (and we have shared these tips for supporting someone with pain). And if you want to know more, feel supported and learn from the research and evidence, perhaps consider joining our ‘Living Well with Fibromyalgia’ Facebook Community.
As you navigate your path to a fibromyalgia diagnosis, remember that each person's journey is unique. By recognizing the early signs, familiarizing yourself with your symptoms, and seeking professional guidance, you can navigate the twists and turns with a bit more clarity. Together with a supportive network and proactive self-care, you can start to develop a management plan with your medical team. Above all, remember that you are the expert of your pain. It can be easy to feel like you’re not in the driver’s seat – especially when the unpredictability and randomness of symptoms leave you reeling, but remember that at the end of the day, you’re in charge of your care.
Okay, I’m done with all the car analogies, I think I’ve fully exhausted them all. But if this seems helpful to you, check out the other articles in our 3-article series:
