Information for Family & Friends

Your loved one or friend are tremendously important to you, but they haven’t really been in their full wellness for some time. But you are at a loss to understand what they are experiencing and why! Are they fabricating their experience for some unconscious reason or other? No. Emphatically no. They are not making it up and they are not hypochondriacal. They ARE unwell – your beloved, your parent and your erstwhile full of life friend, but they are unwell in a different way to the usual illnesses that we are used to.

Fibromyalgia sufferers are ill at a deeper, more fundamental level of their physiology but one which works right through to the most sophisticated levels of their being. They may, suffer appalling pain, lose their ability to have the most minimal level of comfort, lose their ability to function fluidly, lose their ability to regulate their basic programs like their heartbeat properly or keep their salivary glands from drying up all the time. At the other extreme, they lose the subtle parts of themselves which make them so special to us and become unrecognisable to themselves and to those around them. They often comment in the clinic, “I don’t know who I am anymore”. That which gives them greatest appeal to others – their joy, their ability to create a home, to tell jokes, cook etc etc etc becomes increasingly fragmented and eroded. Life may feel painful and joyless to them. As more and more function is lost, more tasks get landed on those around them. Partners can get resentful, frustrated and feel more alone as time goes on with decreasing pleasure in life, falling income and increasing medical bills. Uncertainty becomes the normal. “will you be able to go to the works do with me next week? Not sure how you will be?” “ Can I book that holiday to Spain in October? “
No ? Will you be able to sit through the entire concert? Maybe?”

So instead of life having the pleasant surprises, it becomes littered with the unpleasant unexpected event or symptom. The simple joys can shrink – like riding bikes with the kids, or being able to cruise the shops with the pre-teenage daughter, or organise parties etc. Of course that doesn’t include the more basic levels of function- cooking, organising and keeping the home and job afloat. All of these are regularly impacted by fibromyalgia. Very regularly impacted.

If health is seen ABOVE that which allows the heart to beat, the lungs to breathe and wastes to be excreted, it is clear that in order for us all to function at the level demanded by 21st century living, more needs to be at full operational capacity than we are aware of or indeed can be aware of.

So what is it that our nearest and dearest is losing that they cannot function as they did in the past? The medical investigations are coming up with little more than a low functioning thyroid and maybe wear and tear on an xray. Looking up the net will reveal a hundred or more variables on what can go wrong, yet the predominant day to day perspective is that this is a psychological illness. You know in your entrails that it is not as simple as that but you are at a loss to row against the entire weight of professional and social consensus. How does one filter the mass of variables and arrive at a desired outcome? How does one resolve the suffering and how can life get back on track.?

Technically, one is meant to just take the prescribed medications, get counselling, physiotherapy and exercise and all will be well to a limited point. The difficulty is that the limits are likely to keep shrinking and the suffering is likely to expand.
In the interim, the days of life are lost which creep into years. The crawl out of the predicament seems to get harder and harder.

What the Fibromyalgia Programme does is, instead of chasing the variables of symptoms, events and medication consequences, it aims to restore the ordering mechanism governing everything back to full function. By restoring parasympathetic dominion (the administrative/cohering /housekeeping wing of your unconscious control mechanisms) the body will eventually switch off all of the errant pain sensations, and restore power and sophistication of function.

The Fibromyalgia Programme aims to restore order, power, governance and pattern. It undertakes to resolve the chaos, optimise coherence, rewire the autonomic governance and restore the being to that which you and the sufferer recognises more clearly as them. It is through rebuilding the entire connective tissue/fascial web which provides infrastructure to human body and much more besides. While coming from a background of standard medical practice, it was apparent that much more understanding of full human reality was apparent. Over time a composite picture of HUMAN INFRASTRUCTURE HEALING emerged.

If you are not accustomed to seeing healing and treatment in such a way, it is not surprising. This work of the Programme has emerged out of relentless pursuit and integration of fractal truths. Multiple small insights are combined together to form a complex pattern of understanding. Dr Downes uniquely navigates along a path through the maze that is fibromyalgia to get your loved one back to being fully comfortable and feeling fully alive.

As this is a repair Programme and not a pain management programme the rules of engagement are somewhat different from what one would normally expect. A pain management programme is centred either on symptom control or optimising mental attitude to deal with the symptoms. However, the Downes Fibromyalgia Programme is concerned with much more powerful fundamental issue – restoration of what should be there to begin with i.e order, power, governance and the ability of the patterns and gifts of an individual to unfold smoothly in their day to day lives. It works to restore their ability to restore themselves.

The support you give to your loved one or friend is critical to their recovery. You need to simply be their rock – not opinionated, judgemental nor analytical. Getting into this state hasn’t been a logical journey, and getting out of it, as it happens, isn’t logical either. Getting out of it is a bit like multiple code breaking – it is not a linear logic that will get your loved one out of this, but a curvilinear rationale, techniques and very considerable experience.

Trying to second guess what the body is doing in this time of rebuilding is a waste of emotion and energy. You simply need to do what physical supportive household tasks you can manage, try to do attentive things like run a bath, give a foot rub, make tea, etc., and keep a sense of care and concern APPARENT

You are best to just report on the positive observations that are obvious to you – such as able to stay up longer, being in better form with the kids, able to cook without sitting down half way through etc. Functionality and pattern will be recognisable earlier in the sequence than symptoms for reasons that are quite complex. The rule of thumb is to track the increasing functionality and let the symptoms roll about for now like scrap iron on a wobbly ship. Eventually the pains and symptoms will begin to decrease, but there will be multiple flare ups before things become completely quiescent. This is the time when many will falter and get diverted away from the big outcome of control and dominion in one’s life as well as comfort.

There is no point in being comfortable and painfree enough to sit and face the wall for the rest of one’s life. One must have power and governance as well as comfort to function at the level we all need to.

In brief, what you can do is:

1. Keep the coordinates on the BIG win of control and functionality in life, and restoration of the person whom you recognise so well. Not the immediate superficial tracking of symptoms

2. Don’t get emotionally drawn into the fluctuations of symptoms that will inevitably occur. It is not an accurate reflection of what is really going on.

3. Provide a clear, unswerving frame work of support for your loved one- leaving analytical judgement of what is occurring to the side.

4. Your loved one typically has put too much of her/him heart and soul into people around her/him and activities related to those people and her/his work, so some care and attention will provide some replacement input .

5. Notice and pay attention to subtle patterns of expansion and solidifying of functionality. Let her/him know what you are observing- less depth of drop in energy, able to smile more, in better humour in the morning etc.

6. Even when you don’t understand what is going on with your partner’s symptoms, hold any thought that it is crazy and improbable. It just is what it is-until the mechanism going wrong behind it is repaired.

Your loved one or friend has wonderful human patterns and potential which at the moment are held in a state of inaccessible chaos. Your solid, unswerving support will allow that human essence and potential to be released again. It is tremendously important to us all that human potential is not lost to locked down suffering and vital to the happiness of your household and social life that those that are treasured by you are restored to their radiant selves. Be patient, be solid, be there.