Today my zebra has gone purple as it is the awareness day for fibromyalgia as well as for ME/CFS.
I don’t often talk about the fact that I have a fibromyalgia (or fibro for short) diagnosis as well as my Ehlers-Danlos syndrome but it is actually quite common for people with Hypermobile EDS to get fibro secondary to their EDS.
Secondary fibromyalgia is slightly different from the more well known about primary fibromyalgia. The more common primary fibro has no identifiable cause, whereas secondary fibro does – in my case my EDS. This means I can sometimes foresee a flare as a result of a dislocation or series of dislocations.
What is Fibromyalgia?
Fibro is a chronic and sometimes disabling condition characterised mainly by persistent musculo-skeletal pain with no identifiable cause. Other common symptoms among sufferers include extreme fatigue, brain fog which is sometimes called ‘fibro fog’, muscle spasms and cramps, sleep disturbance, waking up un-refreshed, IBS like symptoms, irritable bladder, headache, a pain response to pressure/touch, and sensory overload.
The causes of fibromyalgia in general are not understood and there are many theories about why it occurs. As secondary fibromyalgia often occurs in those of us with painful conditions such as Ehlers-Danlos, one theory is that the brain becomes so used to the pain messages it receives from frequent injuries that it ‘forgets’ to switch them off again when an injury is gone.
What about ME/CFS?
Today is also the awareness day for ME which stands for myalgic encephalopathy (or myalgic encephalomyelitis) which is also sometimes called Chronic Fatigue Syndrome (CFS).
ME is also a complex chronic condition whose causes are not fully understood. Many of it’s symptoms cross over with those of fibro and PoTS so it’s important that patients get the correct diagnosis. Symptoms include severe fatigue, brain-fog, headache, sore throat & swollen glands, musculo-skeletal pain, un-refreshing sleep, IBS like symptoms, PoTS like symptoms, and sensory overload.
How a particular suffer is affected by either of these invisible conditions varies. Some are only mildly affected are able to care for themselves and manage a relatively normal life with some sick days while others are very severely affected and may be unable to work or even get out of bed without help for long periods.
Both fibro and ME are surprisingly common with fibro affecting as many as 1 in 50 people in the UK (some estimates go as far as to say 1 in 20) and around 250,000 ME sufferers nationwide according to the NHS. Both are common in women for reasons as yet unknown.
In other words, you almost certainly know someone who has one of these chronic but invisible conditions. Yet the causes of them have still not been unravelled and no reliable treatments or cures have been found, some older doctors still refuse to believe the conditions even exist or believe they are psychological in nature.
Invisible illness is hard to deal with but some people’s attitudes are worse. Most people don’t see you at your worst when you’ve collapsed on the sofa in pain or can’t get out of bed because of severe fatigue (I don’t mean just feeling tired, fatigue is a whole other ballgame) and waking up feeling like you’ve never even been to sleep. As they only see you on good days when you’re able to go out and do things they often might not believe you are genuinely sick, that it’s all in your head or think you are making it all up. Dealing with these “but you don’t look sick” people on top of a chronic illness is hard work and many sufferers stop mentioning that they even have it or only tell close friends in order to avoid the stress. Stress is very much something that triggers flare-ups in my own fibro symptoms.
All of these syndromes need more awareness among doctors that they are very real physical illnesses, not psychological, and need better forms of treatment.