Articulating the Experience of Fibromyalgia

Articulating the EXPERIENCE OF FIBROMYALGIA

Let us articulate the varying patterns of experience of FMS, in simplified terms of MILD, MODERATE AND SEVERE.

MILD

This is where the general attention is held in terms of the perception of fibromyalgia. Pain, tenderness, sleep disturbance and fatigue, are the core features. But apart from the irritations of pain/discomfort/sleeplessness – functionality is preserved, though more effort is needed to continue functioning at the usual level. Pain will flit from place to place; good days, bad days, with ebb and flow. Upsets and irritations exist but they can be brushed aside with the strength of commitment and intention. Work becomes more challenging but little alarm is typically felt and a series of trips to GP’s, chiropractors, osteopaths, acupuncturists etc. begins with fairly good relief. The little bit of chaos that has landed on board ship from accident, illness, emotional stress etc. can be managed, packaged or ignored. All will be well. Or maybe not…..

MODERATE

The load carrying ‘merchant navy’ ship of life struggles on with its often excessive demands and loads. The loaded, multitasking life, exerts more strain on a ship with certain design parameters. To remain afloat, its design parameters need to be accounted for. Stack the physical, emotional or mixed loads too heavily and for too long, the ship will begin to sink below the water line, invisible to all around.

Pain will become more persistent and severe, exhaustion more invasive and the loss of stability of function – more obvious and overwhelming. A portfolio of weird, distressing, embarrassing problems opens in the life of the sufferer (which is rarely expressed to third parties). While there may well be loud whinges about localised areas, the remainder is suffe red in silence.

Relief from medications, injections, bodywork of various types and natural products becomes more blunted and limited. A sense of worry and insecurity becomes more pervasive. There is something of the feeling of getting caught in coastal caves with darkness and the tide coming in.

They may continue to ‘look well’ – but there are some telltale signs that this ship is sinking.

The eyes are more dulled, strained and distant looking. The upper arms (and elsewhere) feel more loose and floppy (even in thin people) as muscle/fascial coherence is lost. Then skin becomes drier and looser. They move more mechanically. They have lost the bounce of vitality in their system.

SEVERE

As the load of chaos increases and capacity decreases, sufferers typically find that they have mostly bad days and spend most days in a leaden, entangled web of suffering and dysfunction. They feel as if they are dropping off the radar of life with increasing momentum. For many, the journey from the bed to the chair to the kitchen and back is the day’s pinnacle of achievement. Every millimetre of the body may well be extremely painful. Crevices which are normally zoned out of consciousness intrude and invade the day with unspoken of discomfort. Orifices and cavities normally having dual conscious and unconscious mechanisms stretch out of range of intentional control. With urinary or faecal episodic ‘let me die now’ events, glitchy swallowing, uncontrolled body noises, and underpowered phonation, these add to the stockpile of distress and reasons for social withdrawal. Bear in mind that if someone “normal” is having a bad time, they can choose from a variety of consoling activitie, apart from taking tablets but with fibromyalgia this is not so easy:

“NORMAL” escapes           the Fibromyalgia sufferers equivalent.
Talk for hours to those close to them:           Conversation exhausts
Watch TV/Go to the movies:           Unable to tolerate electro magnetic effects of TV/public places
Eat comfort food:           Wheat aggravates pain in most Dairy aggravates symptoms in some Nausea and intestinal upset can be a constant.
Go for a walk to clear the head:           Often unable to walk beyond a few yards
Lie down:           Pain often gets worse. Can’t bear pressure on hips. Head and neck pains often become aggravated
Read a book:           Can’t concentrate or focus
Have a cuddle           Too tender and painful to be touched
Go shopping/swimming/to the pub:           “No chance”
Seek help from Therapist:           Can’t travel
Go on holiday:           Can’t travel
Be with people:           Sensitive to sound and personal space and noise
Be alone:           Sense of isolation greatly magnified

Emotions in this state can vary from consuming rages to fragile and porous to having heart of lead. Thoughts take on a life of their own with barrages of self attack, recriminations, self hatred which are magnetised to the mind. Such is the nature of the unconscious system evading conscious synchrony. It is difficult to feel that they have actual dominion over their lives, because in general they don’t. It is a very scary experience.

And Then there is the PAIN ………

“Off the scale”, “I thought I would break”, “I couldn’t take it anymore”, “It was agony”, “I felt as if I was dipped head to toe in boiling oil”, “It’s like being bound up in spiky fishing wire”. Such are the articulations of the pain experience.

To the uninitiated in the complexities of fibromyalgia, the answer looks extremely easy: Take a painkiller. Done. Alas – not done.

Anybody at this stage of fibromyalgia will typically be on 3-4 different types of painkiller already. But they are still in agony or spasms of some kind. Adding on morphine may take the edge off – but they will still be in pain – severe, unrelenting pain. Why?

In severe fibromyalgia, normal, coherent, ‘straight down the line’ responses to drugs evaporate. Sufferers will either under respond or over react to medication. The more they need the relief – the less they can avail of it. Fibromyalgia is a state of physiological anarchy. The whole situation becomes deeply cruel, but surrounding sympathy often evaporates. Ignorant insult is often added to invisible injury. We should become conscious of this.

In summary, fibromyalgia begins as a pain condition which then may seep and erode its way through the fabric and framework of the human being leading to its functional disassembly with cumulative inaccessible suffering. It can affect:

Every millimetre of the body with pain or discomfort
Every organ system with symptoms – fluctuant or persistent
Every dimension of the being
Every aspect of life
At all levels, this condition needs to be taken extremely seriously. Its ability to wreck individual lives, family units, social and employment networks as well as impacting on the health systems of any country should merit a high focus of attention on it.