FIBROMYALGIA -- an Illness now in the Limelight

FIBROMYALGIA – AN ILLNESS COMES INTO THE LIGHT

Fibromyalgia and related Chronic Fatigue Syndrome - Irritable Bowel Syndrome have been and still are in many quarters treated as a set of illnesses that emanate from the head, i.e. from stress related events or mental issues such as depression which then will affect the physical being.

Its true that Fibromyalgia in otherwise healthy people of all ages including children, can be triggered by a severe emotional event and once out of the bottle does not go away, can only be curbed.

However few people also realize that this illness or syndrome can be triggered by a traumatic physical event such as a car crash or accident, which is not in the head!

However looking rationally at this apparent logical 'comes from the head' perception, it is understandable that sufferers experience wherever they go and from people even closest to them, doubts as to whether they have 'any' serious illness at all.

That is why it is currently known as the 'invisible' illness, very difficult to test for, other than an internationally recognised 'tender pressure point' test as each sufferers symptoms will be unique to them so
a useful site to access for help & information is www.invisibledisabilities.org.

The same applies to medication to treat the illness, as the same recommended medication can have completely opposite effects on different people, so guess in part we can't blame the medical & benefit arena entirely, that is why its down to people power, as 'knowledge is power'!

It also can't be easily seen externally, but that does not make it any less real and painful to the person with it so suggest looking at www.painsupport.co.uk.

We think this 'perception, even from closest family or from much of the medical and benefit system is the greatest barrier to those with Fibromyalgia getting the treatment, the understanding and support they rightfully deserve!

After all this is an illness that can stop people working, driving, caring for themselves or even getting out of the bed much of the time, and when they do many suffer memory and concentration loss or 'fibro-fog' as its now medically recognised, see www.fibromyalgia-symptoms.org.

Remember the 'ME' period in the 1980's when that was thought just to be 'yuppie' flu. So we can change things and make a difference if we work together and swap information.

FIBROMYALGIA is now out of the closet and officially brought into the light of day, but we are still in the shadows.

So it’s not all bad news! So how do we change peoples minds, get listened to seriously, treated fairly?

As we mentioned earlier, 'knowledge is power' so let's get together and find out all we can about this illness, its variations and the usual CFS & IBS that seems to gather in a ‘2 for 1’ package
(see http://chronicfatigue.about.com) what medications, treatments, information, research and facts are available that we can take to our Dr or Consultant to get better individually tailored treatment rather than being fobbed off as is reportedly years of experience for most of us.

Of course if you have a great sympathetic Fibromyalgia knowledgeable Dr (is there such a person) then please let us know so we can all go there!

Fibromyalgia and all its other associated ‘friends’ that live with us can drag us down, get reduce the productive time in a day to almost zero, can leave us locked in bed for days, something few people realise or understand, but equally there are many who’ve mastered or masks the daily effects of Fibromyalgia and get on with very productive lives. For example I know one lady that runs a café, another a band and so it goes on so there is a positive side, if we want it, can find it or be shown it. Read:

FIBROMYALGIA:Understanding & getting releif from pain… Piatkus books lond Dr D L Goldenberg


But the best way is to talk to others, to swap stories, to pick up what may appear to be small tips but could be life changing, for example its been said that 2 teaspoonfuls of condensed milk can keep the Fatigue away: or find an ‘infrared sauna’ to ease the pain, its that sort of help that can make a difference to peoples lives, so please help to do that for others.

I’m if you like just a fact gatherer so hope the information on the following site pages can help you to do that, but in return would also ask for your contributions as if that knowledge is not passed on from person to person then people will continue to suffer in the darkness.

Regards

John
Swindon & area Fibromyalgia information & support group (SWAFIS)
Jan 2011