According to Centers for Disease Control and Prevention (2020), fibromyalgia is a widespread pain accompanied by sleep problems, fatigue and often emotional or mental distress. The cause of fibromyalgia is poorly understood and the fact that no test is able to pick up the symptoms of fibromyalgia, it is often known as an “invisible disease”.
Imagine having pain round the clock but all your tests tell your doctor that you are fine, and your doctor believes in the results more than your emotions, frustrating isn’t it?
To break it down for easier reading, I have streamlined the content from a patient’s perspective:
Q. How does Fibromyalgia feel like? Is this a constant flare?
A. It is classified as a musculoskeletal disorder and the pain sensation is rather complex. Every part of the body has a different sensation thus it is subjective. My back feels more like a dull ache. My elbows feel like arthritis’ joint pain and stiffness. The pain on my wrists is a sharp tingling sensation with numbness that feels like my nerves are tangled.
Unlike some autoimmune conditions in which pain flares only happen periodically, fibromyalgia pain is pretty much constant and intense. There are only bad days or worse days but never a painless day.
Q. Why is Fibromyalgia so difficult to be diagnosed?
A. The early onset of symptoms are very common and similar to other minor conditions which you or any doctors will not suspect of fibromyalgia such as muscle ache and fatigue. What are the chances of you visiting a doctor for these symptoms? What are the chances to be dismissed by doctors with mere painkillers?
In the context of Singapore, the prevalence of fibromyalgia is even lower when compared to US and UK as many of us go undiagnosed or misdiagnosed. In most cases, fibromyalgia diagnosis is only derived when all other conditions have been ruled out. Hence it is common to expect a long and tough diagnostic journey.
Q. How is Fibromyalgia diagnosed?
A. First and foremost, you have to be lucky enough to meet a doctor who knows and believes in fibromyalgia. I have met doctors who dismissed me with long-term painkillers, bounced me off to other specialists or downplay fibromyalgia without treatment. As there is no specific lab test or imaging scan that will pick up fibromyalgia, both you and your doctors are the key persons to a proper diagnosis.
Traditionally in the 90s, 18 tender points of fibromyalgia were established however it was no longer taken into account as patients have reported widespread pain in other areas beyond the 18 tender points. Since then, a combination of Widespread Pain Index (WPI) and Symptoms Severity (SS) with symptoms that have been present for over 3 months of a certain level of WPI and SS meet the diagnostic criteria of fibromyalgia.
I shall not go into the details of the diagnostic criteria as I was not diagnosed using this method. In my honest opinion, this diagnostic criteria is too much of a hard and fast rule. People living with fibromyalgia will understand that having one tender point is bad enough to impact one’s quality of life. Besides, physical pain is just the tip of the iceberg, with many other more symptoms.
Q. How long does a Fibromyalgia diagnosis take?
A. Typically it takes an average of 5 years to be diagnosed. In my case, my very first symptom started 6 years before my diagnosis which I quickly dismissed as it felt like a pretty normal backache. It was only a year before my actual diagnosis when the progressive symptoms spread throughout my body and called for medical attention.
When I finally got the diagnosis, everything started making sense as my body has been giving subtle warning signs over the years. So it is very important to pay attention and listen to your body. Don’t be too quick to dismiss or to be dismissed by others.
Q. What causes Fibromyalgia? Is Fibromyalgia real?
A. Studies have shown that the possible trigger factors include PTSD, stress, depression or other mood disorders, sleep disorder, drastic change in routine, or a possible cause by genetic factors. I believe mine derived from a bout of depressive episodes coupled with prolonged sleep disorder and stress.
While fibromyalgia seems to have close relations to psychological factors, some health professionals believe that fibromyalgia is purely psychogenic and it is all in the mind. Well, to put things in perspective, tattoos and injections don’t hurt for me but fibromyalgia pain does.
Q. Is there a cure for Fibromyalgia? What is the treatment like?
A. Unfortunately no, my doctors have clearly said that they can’t make the pain go away but they can help to reduce the pain. Treatment in the case of fibromyalgia simply means managing your pain to improve your quality of life. Fibromyalgia symptoms can be progressive if it is not managed properly.
As pain is subjective, whether medication or therapy, patients often have to undergo trial-and-error to find the right balance. Fortunately, with self-awareness and early intervention, we can still lead a normal and healthy life.