Most of my acquaintances are unaware I have lived with fibromyalgia and myalgic encephalomyelitis (aka Chronic Fatigue Syndrome/ CFS) for over 20 years. People are often shocked to discover this.
“But you look fine!”
Exactly.
There are no visible signs when I am well enough to be out and about, and when I am too ill, I can’t leave the house, so people don’t see me.
Compared to the late 1990s, there is more awareness of such conditions. However it is still often not taken seriously. Most people go through multiple practitioners to get a diagnosis, and are often dismissed as depressed, stressed or hypochondriac.
Brief overview
- Fibromyalgia is primarily characterised by pain and tension in muscles, tendons and ligaments, and specific tender points. It literally feels like bruising when gently poked, but in flare ups is a more full body migraine.
- The characteristic primary symptom of Myalgic Encephalomyelitis, (formerly known as CFS or Chronic Fatigue Syndrome) is long term exhaustion, that doesn’t improve with rest, and post exertional malaise (= feeling like a death after exercise, sometimes for days).
- Many clinicians believe them to be slightly different manifestations of the same condition as they have many other overlapping symptoms.
- They both involve multiple body systems: Fatigue, muscle weakness, aches and pains, insomnia, unrefreshing sleep, brain fog (memory, learning, concentration issues), impaired co-ordination, heat or cold intolerance, gastro-intestinal problems, hormonal problems.
- They are both diagnosis of default – ie when other causes have been ruled out. Most standard testing (blood and body function profile, thyroid levels etc) comes back normal. There are usually increased levels of cytokines (inflammatory chemicals in blood), but these are not routinely run, and a lot of general practitioners are currently unaware of them.
- Two common underlying causes of both fibro and CFS are Lyme disease and mould illness. These are still struggling to be widely recognised by mainstream practitioners.
As these conditions involve a hyperactivated immune system, secondary allergies and intolerances are common, both to food and environmental factors. This can manifest as headaches, nausea, fatigue, concentration problems, psoriasis, asthma, digestive problems, mood swings (especially in kids), itches, rashes and skin flushing.
There are many other Invisible illnesses which have many overlaps in their underlying pathology:
Lupus (SLE), Lyme Disease, auto-immune (Hashimoto’s) thyroiditis, Sjögren’s Syndrome, Reynaud’s Disease, Sensory Processing Disorder, dysautonomia, (POTS) Postural Orthostatic Tachycardia Syndrome, recurrent interstitial cystitis, Ehlers-Danlos Syndrome, Multiple Chemical Sensitivity. Over time, as the body’s biochemistry goes increasingly haywire, they often develop multiple conditions, with many overlapping symptoms. Which diagnosis sometimes depends on which practitioners you have seen.
Take home message: it is common to have multiple problems, with symptoms that wax and wane. It can get very complicated to diagnose and treat. Different doctors may call the same set of symptoms different diseases. It’s really important for the people around sufferers to understand this.
This article is for educational purposes only and not meant to replace medical care
You can find Von Danse on Instagram @theTangledPath
Very useful descriptions, thank you.