Well you would presume that is a question that I get asked a lot. But you would be wrong.
If you were to ask anybody with an obvious physical disability they would probably tell you that response to them usually falls into one of two categories. Either people initially over-react and at least for a while cause both parties embarrassment by trying to be overly helpful or overly considerate. Alternately they make an equally embarrassing effort to try to ignore the disability that they are presented with. They will tell you that in the main both of these are usually overcome eventually through talking.
People with facial disfigurement however will tell you that people generally respond by trying to blank-out or even not look at them. Or on occasion they can be treated like a new-born baby or pet and a massive overdose of sympathy, often perceived as false. To a lesser degree people with this disfigurement will tell you that this can be sometimes overcome, but it is much more difficult for some reason.
Now you can call Fibromyalgia, an illness, an affliction or even as a syndrome but the reaction to this, and every other invisible syndrome is usually a nod of the head and then absolute ignorance.
If you were to approach anyone with Fibro and ask them what it is like you will get one or two responses. They will say next to nothing, or they will take you to one side and give you plenty of scenarios of things cat you have or could come across and describe how it is for them within these hypothetical scenarios.
They are neither trying to avoid you, nor are they diverting you through a barrage of nonsense. It is that it is difficult for anyone with a visible disability to explain the impact that it really has on their everyday lives, so try to imagine how difficult it is for someone with an invisible disability. Because it is just as much a disability, but that person knows how difficult it is for you to comprehend what they are suffering.
The single most effective way that I have found to enable me to draw a picture that anyone who is trying to understand could see, I came across when all the suspicions were pointing in my case to Lupus, which is a very similar condition. And that is a theory written by Christine Miserandino, who had suffered Lupus for many years. If you are interested you could see a YouTube on this at the following link: https://www.youtube.com/watch?v=jn5IBsm49Rk
So What is it?
While only an estimate, fibromyalgia affects 1 in 50 people, totaling up to 6 million.
It is characterized by chronic musculoskeletal pain accompanied by symptoms like brain fog, cognitive impairment, depression, painful points throughout the body, fatigue, and sleep disturbances. The root cause of fibromyalgia still remains unclear, and the conventional medicine currently addresses its symptoms using pain-relievers and antidepressants.
So it’s cause is unclear, indeed although currently listed as muscoskeletal, in the US, a new theory is starting to gain some kudos and that is that the syndrome could be veinal in its origins. But neither theory has yet managed to establish if it is an initial infection or even if it is a congenital syndrome.
It affects every aspect of your life, and that invariably is all the time. This is for two main reasons, firstly when the illness is in an active faze (often known as Flare) the sufferer finds themselves practically incapable of functioning in their normal role, either all the time of the flare, or certainly only in very short bursts. And secondly the inconsistent and unpredictable nature of the flare often leads the sufferer to rein-in their activities dramatically as to not let anyone down.
It is of little surprise that along with the pain that sufferers manage, and the unpredictable and absolute fatigue that becomes as to influence the whole of their lives, another serious symptom is that of depression. If this is part of the syndrome or a result of it remains to be seen.
Who is at Risk
The illness currently is seen as effecting mainly women around 70% of diagnosed cases world-wide are women although as the detection methods and understanding of the symptoms continues to improve more and more men are now being diagnosed as sufferers, indeed in the USA in the last 5 years the ratio has been around 50/50.
One of the most damaging aspects of this syndrome is that it seems to effect the most capable, the most active and an unfortunate trend seems to be that a high proportion of people diagnosed are, or have been career high achievers, who have fought the onward progression of the illness sometimes for many years before they get diagnosed.
So effectively they have felt their abilities slowly get ever increasingly limited for now apparent reason. Then when they finally start to put one symptom next to another and start to wonder if they may all be part of the same thing, they face a very diverse diagnosis path.
In my case I suffered for around 20 years, before I sat in front of a GP and went through them all.
When you get to this point, however long you persevere with one silly self diagnosis after the other. You begin to realise very quickly that the diagnosis is going to take a very long time. The problem is that Fibro shares many of its symptoms and series of symptoms with many other illnesses. You are going to give bloods in series of 10s and go through many departments, and many specialties within many areas, physiotherapy, neurology, rheumatology, phlabotomy, and then go around again. Slowly gathering this drug for that symptom, that drug for the other. To the point that you need a daily spreadsheet to be able to manage your drugs.
You see there is now blood test, nor any set of results that can point with any certainty at Fibro.
Then you get diagnosed, and you find out that there is now drug, nor even system of drugs that can currently be relied upon to deal with your syndrome, which is progressive and incurable. All that there really is, is a drug or series of drugs to manage each symptom.
Well the risks of this illness, are currently, discomfort, fatigue, pain and then there is lethargy. You are at most risk with this illness of laying down accepting it and fulfilling the cycle.
Because of the inevitable depression that partners this syndrome it would be all to easy to do nothing, and rest assured if that is the course that you take, it will get worse, it will progress and you will develop even further problems, obesity and diabetes to name but two.
As you come to terms with both the illness, and the role that you must now play in managing it, you quickly become aware that there will be times a plenty that you will be in a position where it will just be impossible to most anything. So it becomes your responsibility to make the most of the times that you can, and use them to the max. Dependent on the progression of your illness will dictate if your can continue work, or not along with any adjustments you will need to make to enable your continued fitness.
Physical, social, and mental exercise and dietary investigation and control are now going to become imperative in your wellbeing. You have to make use of any technology and any self-help that you can to both measure and control your wellness.
It is for this reason that I recommend the continued use of a fitness tracker. When you begin to take an interest in what makes you and this syndrome tick if you manage the data and the symptoms you will begin to drill down into the patterns of the cycles this syndrome goes through. You will begin to find your specific triggers, and as a consequence, if you pay attention you will empower yourself for longer periods of wellness.