The Medway Fibromyalgia Support Group:

The Fibromyalgia : Work Paradox

 We support the Doctors and politicians who believe that long term sick and unemployed people would, in general terms, be better off returning to paid employment.  There are undoubted benefits in terms of self esteem, money, better mental health and so on. 

This view has become Government policy by the introduction of the Employment Support Allowance system which aims to review large numbers of long term sick and disabled people and get many of them off sickness benefits and into work – or alternatively on to lower levels of benefits as ‘normal’ unemployed people.

The remaining (‘genuinely’) disabled and incapacitated people would under the new system remain on long term sickness benefits (ESA or a special form of Income Support with ESA elements). Many of these people will also be encouraged to participate in ‘work-like’ activities such as training and job searching.

With the Government's new 'welfare reforms' being introduced over the next few years with its strong emphasis on work being the 'default position' for benefit claimants, the issue of people with fibromyalgia returning to paid work now needs  to be highlighted more than ever before.
 
As a support group we have great admiration for the few people with Fibromyalgia who are able to carry on working (or who feel they simply have no choice but to carry on working), in spite of all of the pain, fatigue and other adverse symptoms associated with Fibromyalgia.

There is, however, a big reservation that we need to point out to the GPs, Benefits Agency doctors and to the politicians and policy makers.  People with Fibromyalgia have the condition for life.  It is possible - usually after a number of years - for Fibromyalgia sufferers to settle upon a number of treatments, therapies, drugs, diets and exercise regimes which will help stabilise their condition – and even to maximise their chances at living a relatively normal life. Our GPs are key in helping us in this quest.  But a modicum of realism needs to be held by all parties. 

These improvements in Fibromyalgia outlook are usually hard won and modest in scale.

 An important message we have for new members is to stop looking for a cure: there isn’t one! Instead we encourage people to find a range of different things that help incrementally as well as eliminating as many ‘bad’ things as possible. One of the most important things our GPs  can do for us is to help us identify and eliminate as many of the ‘precipitating factors’ which make our condition worse. A very important ‘precipitating factor’ is poor sleep. Here our GPs can help to minimise the sleep problems which we all have (it is one of the few ‘absolute’ symptoms we have and as such is part of the diagnostic criteria for Fibromyalgia). Help might be given by prescribing drugs such as amitriptyline at night and/or by suggesting that very early morning starts (usually essential for getting a job) are best avoided. 

Case example

One theoretical model we share with doctors is the notion of ‘vicious’ and ‘virtuous’ circles:

Susan is a single mother of two.  She has Fibromyalgia but does not yet know it.  She works part time in a packaging office.  Her duties are light, but with her pain and fatigue and sleep problems she is taking more and more time off work, and she finds it hard just to raise her children and run her own household.  She is also getting worried about these symptoms as her GP cannot seem to get to the bottom of them.  Susan finds it exhausting enough just to get through the day looking after her family.  If precipitating factors are not kept in check, her pain, fatigue and her other  symptoms will get worse and worse, leading to even worse sleep cycles; more hours spent trying to get her job done and less time and inclination for any exercise. In turn, this leads to Susan’s general condition becoming poorer and poorer. In this example Susan has also ‘relied’ on cigarettes and alcohol both to help her ‘cope’ with her symptoms and in a mistaken belief that sleep would be facilitated if alcohol is consumed in the evening.  In this example, Susan’s symptoms become increasingly poor until she reaches a stage whereby she takes so much time off work on her ‘flare’ or worst days that she is made redundant on the grounds of incapacity.  Until her cycle is broken with some positive intervention by medical professionals and some positive actions by Susan herself, her outlook is extremely poor. 

The other side of this example is where the ‘virtuous circle’ can be established.

After Susan loses her job she already feels an improvement due the reduction in stress, the physical activity and the early starts which were factors of her job.  In terms of this model, some of the ‘precipitating factors’ of her Fibromyalgia were removed by the unwanted loss of the job.  Susan also received some crucial further help and support from her GP at this stage.  After a referral to a consultant rheumatologist, Susan (at last) has a diagnosis of Fibromyalgia.  This by itself is a great relief to Susan, who had never heard of Fibromyalgia and had wondered if her symptoms were due to a life - threatening condition.  Her GP starts her on a number of drugs which help to lower the pain and fatigue, and help her sleep improve.  Susan also joins her local support group and finds out a great deal more about Fibromyalgia.  Over the next twelve months or so she tries a whole host of tips, hints, dietary changes and supplements; and a range of aids/appliances (some of which make no difference whatsoever but some of which do help make small improvements).  Susan is now in a ‘virtuous circle’.  At one visit to her GP, Susan is told that gentle graded exercise could help her. She is at first sceptical because she knows how most activities usually cause her additional pain.  She is also persuaded to lose the cigarettes altogether and to limit the alcohol she takes, especially at bed time.  Susan starts a programme of walking to and from the shops and gradually extends this walk around her local park.  Susan also joins a local yoga class and finds this to be an excellent way of stretching out her soft tissues (her muscles, tendons, joints etc.).  This helps her considerably and she starts to do some of the stretching at home with a yoga DVD after 11.30a.m when she feels at her best.  Susan’s virtuous circle is working well, her symptoms are much reduced and her quality of life is much better.  Susan feels she can now just about cope with the demands of running her household and raising her children albeit with the drop in income she has experienced by losing the job and going onto benefits. Susan’s GP is delighted at Susan’s progress and now asks her the question “So when will you be able to return to work?”  This is entirely understandable as GPs usually help patients with ‘acute’ conditions to get progressively better and better to the point where a normal life can be resumed.  A return to work seems to be both a logical and desirable ‘next step’ so far as her GP is concerned.  His NHS contract even rewards him for helping patients get back to work. Unfortunately, Susan’s Fibromyalgia is a life - long chronic condition which will always have the potential of causing a range of significant and debilitating symptoms. 'Bad' days are still unpredictable, yet frequent. For Susan, the condition will always be there and she could very easily slip back into the negative clutches of a vicious circle if her particular regime is interrupted by the major lifestyle changes involved in taking up a new job.

This is the Fibromyalgia: Work Paradox. The more 'healthy' a person seems to be due to their individual regime helping to manage their symptoms, the more it seems they should re-enter the world of work and lose their benefits, as appropriate. However  the lifestyle changes necessary to re-enter paid work, which would not be problematic for some groups of people -even desirable for many - would be severely problematic for the Fibromyalgia sufferer. This is because the changes necessary for them to return to work (waking early, traveling, taking on stress, performing poorly because of their 'fibrofog', losing their exercise program etc) are highly likely to shatter the regime they have established for the the management of their symptoms. In  terms of the medical model discussed above in Susan's story, returning to paid work could plunge her back into a 'viscous cycle'.

  Unfortunately this paradox is not acknowledged within the new ESA system (there is medical guidance on fibromyalgia but it does not explore this important area in any way). Also, as our relationships with our own GPs are vitally important, there may be many GPs who need to be made aware of this situation (some members of our support group have informed us of how they feel their GP had begun to lose empathy for their situation when they have tried to explain to them how they are deeply worried about the prospect of returning to work).

For our own support group members and other fibromyalgia sufferers who can identify with Susan’s story and who recognise that this situation applies to their own experience it might be helpful to copy this article and share it in order to point out this paradox to their own GP and, if applicable, to the benefit officials and doctors when making their claim for eligibility to the Employment and Support Allowance system of benefits, or to help with any subsequent appeals. This information may be even more helpful with the Government's new 'welfare reforms' coming into existence over the next few years.