FIBRO WHAT?

By Jeanne Hambleton © 2007

This weekend (8th September 2007) is the start of Fibromyalgia Awareness Week and I, for one, am pig sick of people saying “Fibro what?” when I tell them I have fibromyalgia.

I rang a travel insurance company to explain why I was falling apart at the seams so they would insure me for a trip abroad. When I said the “f” word, I followed this with, “Shall I spell it?” To my amazement she knew exactly what I was talking about. Now there is a first!

So apart from airline travel insurers we do need to let the rest of the world know, in this Fibromyalgia Awareness Week, why we look so well when we feel so ill with this invisible disability.

I am hopeful that you have already planned to do something to raise awareness this week – like putting banners all over your front garden – riding up and down the road with a sign saying you have the dreaded fibromyalgia – or something silly like that.

Maybe you just cannot put one foot in front of the other, or you are aching from head to foot, or maybe like me, the pain moves around the body so fast, it is difficult to know where it hurts most. But if this really is all too much trouble I can offer a solution to ease your conscience.

Are you in the mood to do your bit to raise awareness? If so, please spend less than 5 minutes adding your name to two e-petitions for the No.10 Downing Street website. If you have done nothing else, this is the very least you can do – oh and tell your friends and family. They do not need to have the dreaded FM to sign the petitions. We need at least 1,000 signatures please.

FIBROMYALGIA E PETITION

The first one is pressing the Prime Minister to find some funding to help fibromites.
Log on to this website, fill in your details and an email will arrive on your desktop seeking confirmation, which you click, and you have done your good deed.

http://petitions.pm.gov.uk/FIBROFUNDING/

We the undersigned petition the Prime Minister to allocate funds to help FIBROMYALGIA with research, finding a cure and raising awareness. We implore the new PRIME MINISTER to listen to those suffering with fibromyalgia, for which there is NO CURE, and provide financial help to help them survive – (as the Government has for ME). Who else can we ask for help?

CO-PROXAMOL E PETITION

The second one, new this week, concerns the disappearance of co-proxamol, which is a life line painkiller for most fibromites. Although this is due to be withdrawn at the end of December 2007 – due to an increase in the number of suicides with this drug and accidental poisoning by drinking alcohol with co-proxamol – this painkiller is already disappearing before time. It appears some manufacturers have already stopped making this painkiller, which has been prescribed by GPs since the 1950s.

http://petitions.pm.gov.uk/DISAPPEARANCE/

We the undersigned petition the Prime Minister to tell us why is CO-PROXAMOL disappearing now in September when it is not due to be withdrawn until December 2007? Our GPs say they cannot prescribe it, as the pharmacists can no longer obtain supplies of co-proxamol.

Caroline Flint, the Minister of State, Department of Health, told the House of Commons on 2nd May 2007, that when normal prescribing of co-proximal ended in December 2007, there would be flexibility to continue to prescribe in certain circumstances for people for whom co-proximal seems to be the only answer. TheyWorkForYou.com and Hansard reported the Minister also said she had confirmed with manufacturers that co-proxamol will continue after that date. The main manufacturer “has informed us that it is its firm intention to continue to manufacture co-proxamol following the cancellation of the licenses, so supplies will be assured.” But who is the ‘main manufacturer’ please so we can tell our pharmacists where to get their supplies. The MHRA would not release this information – something to do with confidentially – what confidentially? For heavens sake it is alleged they will have 72,000 customers. Co-proxamol has been prescribed as a safe painkiller since the 1950s and it is used by patients with fibromyalgia, arthritis and many more with painful conditions.

If only CO-PROXAMOL had become a controlled drug under Schedule 3 of the Misuse of Drugs Act 1971 instead of becoming unlicensed after the prescribing ban becomes effective. GPs would then be free to prescribe this painkiller for named patients without the possible threat of litigation, regardless of how strong the patient’s need for the drug. In reality how many GPs will wish to expose themselves to prescribing an unlicensed painkiller. At present the recommendations to withdraw co-proxamol amounts to a comprehensive ban.

I read one interesting comment where a patient suggested you offer to sign a disclaimer confirming you would not sue your doctor if he prescribed co-proxamol for you. Perhaps this is the way forward.

It is my understand that the medical profession has no problem with co-proxamol and are happy to prescribe this to “sensible” patients…. that of course is always supposing someone somewhere is STILL manufacturing co-proxamol or even distalgesic, which has the same ingredients.

We are now on count down and it really time to do something about this dilemma. Why not write to the Secretary for State for Health Alan Johnson – email: johnsona@parliament.uk but do remember to sign the petition first. Tell him where it hurts, why we need research and you cannot function with co-proxamol. That will do just great for raising awareness in this our special week.