Fibromyalgia: A short brief
Table of Contents
A Fibromyalgia “Run Down”
FM is a chronic condition characterised by central hypersensitivity. From my experience and research; historically, and still quite often presently, FM generally gets mischaracterised as a Chronic Pain condition, however it’s important to understand that while widespread Chronic Pain is a hallmark symptom of FM, it’s only one piece to a very large set of symptoms someone with FM might deal with.
Understanding that FM is a Central Sensitisation Syndrome (amplified processing in the central nervous system) will help in understanding how complicated FM is, and how such a large amount of symptoms can occur.
In fact there are over 200 possible symptoms that a person may experience with FM. FM can also often include many co-morbidities, including; Chronic Fatigue Syndrome (ME/CFS), Irritable Bowel Syndrome (IBS), Migraines, Depression and Anxiety, Postural Tachycardia Syndrome (POTS), among many others.
FM can also mimic other conditions such as Systemic Lupus Erythematosus (SLE), Multiple Sclerosis (MS), Rheumatoid Arthritis (RA), Hypothyroidism and other chronic conditions, including those listed above. This can make diagnosing FM a very hard and long process for doctors, and understandably an even harder and longer process for yourself. It took nearly 2 years for myself to get an official diagnosis, which honestly felt like eternity.
I have included a very incomplete list of total symptoms, mostly just the ones I personally deal with, below:
Symptom Overview
- Chronic Widespread Pain:
- Affects arms/hands, legs/feet, neck, back, abdomen, jaw/mouth, eyes and skin.
- Both sides of the body are affected equally and is present in varying forms, all day, everyday.
- The pain is much worse during a flare-up.
- Chronic Fatigue.
- Sleep Disturbances:
- Unable to fall asleep.
- Unable to stay asleep.
- Unable to feel refreshed after sleep, even if the above were not present.
- Pain disturbances during sleep, leading to Temporomandibular Joint (TMJ) problems due to tensing and grinding.
- Severe Headaches/Migraines.
- Cognitive Dysfunction; Often referred to as Fibro Fog or Brain Fog.
- Can affect memory, concentration and judgement, among other things.
- Forgetfulness and problems remembering new information. 1
- Reduced ability to think quickly and efficiently, especially in distracting environments. 1
- Difficulty concentrating or feeling alert. 1
- Difficulty holding conversation or the ability to access stored language information quickly and efficiently. 1
- Temperature Dysregulation:
- Inability to cool down or feeling too hot.
- Increased pain/symptoms in the cold or wet weather.
- Feeling hot(ter) at night.
- Eye Pain and Redness.
- Light Sensitivity:
- Bright screens (including bright light modes) or lights can feel overwhelming and/or painful.
- Allodynia:
- Overly sensitive to touch.
- Small amounts of pressure can cause immensely painful experiences; like slightly bumping into a wall or tapping your hand on something.
- General Malaise/Flu-like feeling.
- Sensitivity to Noise.
- Stomach Pain and Nausea.
- Nerve Pain and/or Numbness.
- Anxiety and Depression:
- Can often present with feelings of hopelessness.
- Irritability.
- Anxiety around symptoms and pain.
Flare-Ups and Feedback Loops
Fibromyalgia often comes and goes through what is commonly referred to a Flare-Up or simply a Flare, which is a period of greatly heightened symptoms and can often be debilitating. However most people (including myself) still experience their symptoms every day. Personally these flares are often caused by getting stuck in a Negative Feedback Loop; however this isn’t always the case, and many different things can lead to a flare. You can think of a Feedback Loop in FM as an either Negative or Positive experience, symptom, or outcome that contributes to other Negative or Positive experiences, symptoms or outcomes, which continues until broken or disrupted.
For example:
Negative Feedback Loop:
Poor Sleep >> Increased Fatigue and Stress >> Heightened Symptoms/Pain >> Worse Sleep >> …
Image Source: https://www.nature.com/articles/nrrheum.2015.56
Being able to recognise and break a Negative Feedback Loop can really help to manage a flare-up, or shorten it’s length.
Invisibility
A large part of the reason I have decided to blog about FM is that the huge majority of people in my day-to-day life, including: family, friends, health professionals including Doctors; Nurses; and Allied-Health Professionals, still don’t fully understand or can’t completely comprehend what FM entails and how it affects me. Raising awareness about FM and hopefully providing some insight is all I hope to achieve.
Unfortunately you can’t see Fibromyalgia like you can see broken bones. You can’t see Fibromyalgia like you can see widespread 2nd degree burns.
In FM, your laboratory tests, scans/X-Rays and Specialist Reports often come back normal, leading some doctors/nurses to confusion and often resulting in being judged, stigmatised against or labelled. Being labelled or passed off as “drug seeking”, “you just have the flu” or “you just have anxiety” is an unfortunate and extremely disappointing reality within the healthcare system here in Australia and likely other parts of the world.
Fibromyalgia might appear invisible but that doesn’t mean it doesn’t exist or isn’t real.
Some concerning consequences of healthcare professionals not understanding Fibromyalgia and other invisible illnesses is that those affected by these conditions are already at a significantly higher risk of attempting or completing suicide. It should be completely understandable that not being willing to listen or help will ultimately increase this risk further. People need to be listened to, heard and appropriately cared for; no matter the complaint or concern.
Before finding my current General Practitioner (GP/PCP) this was a really harsh reality I had to live with everyday. Finding a good Doctor who listens and is willing to investigate and help without judgement has been an integral part of finally getting a diagnosis of and managing my FM.
Closing Remarks
I hope you found something valuable from this short post.
In future posts I hope to dive deeper into some particular sub-topics relating to Fibromyalgia.
If you are reading this, please know that Fibromyalgia is very real. If anyone you know or love has FM or if you know me or you are a healthcare professional; if you haven’t already I highly recommend getting to know FM and how it can potentially affect the people you care for ❤️
