by Jeanne Hambleton © 2008 International Advocate – NFA Leader Against Pain
Welcome to the weblog of the first singles CD to raise money for research into fibromyalgia. It is a first and we are proud of it. With laughter being the best medicine, Fibro What? the CD, is supported by other tracks, all tongue in cheek, but guaranteed to bring a smile to your face.
This new upbeat song has been written and sung by award winning comedy singer songwriter Dominic Collins, a lovely lad from Manchester, who reminds me a lot of Richard Digance or Mike Harding.
Whatever kind of music you like, this fund raising Fibro What? CD is a must to support research and to have a giggle. The new singles CD will be released mid March in time to celebrate International Fibromyalgia Awareness Day on May 12. For details of how to buy please email me (jeannehambleton @ mac.com) with your address and I will send details post haste.
Dominic is a new face on the entertainment scene – his day job is delivering letters as a postie while he sings - I wonder if he does singing birthday cards? Having said that, he will do anything by request. His website (www.domcollins.co.uk) says he will attend any function including going into and out of prison, divorces as well as corporate affairs, birthdays and weddings. He will have you in stitches with tears ruining your mascara.
Fibro What? is supported by three fun tracks – Can you lend me a tenner please Dad? – Does my arse look big in these? – and A girl called Chips.
Christine Thomson and I have been working with Dominic to get the symptoms right for the CD and we are delighted to have his wonderful charitable support. As a personal friend of Christine, Dominic said he was willing to help raise awareness and research funds for fibromyalgia. He has given his expertise, time and money freely to make the CD a success. Now we need fibromites everywhere to buy at least one copy to make the dream come true – to raise money for research.
Fibromyalgia affects two percent of the UK population, mainly women. Those who suffer are usually high achievers, perfectionist, workaholics, and super mums. But Dads and children can be diagnosed too. The first sign with children if often ‘growing pains’ frequently discounted by GPs. Evidence of fibromyalgia has also been found in those veterans suffering with Gulf War Syndrome. It is thought that ten per cent of the population are walking around with fibromyalgia but do not know what ails them.
It is claimed that fibromyalgia is not a disease of the muscles although we do suffer badly from pains in the joints, ligament and muscles. Following new technology developed in Canada in 2006 with brain imaging it is said the pains are caused by a chemical imbalance in the brain and this in turn sends pains to all different areas of the body.
Many GPs choose to disbelieve in fibromyalgia as blood tests reveal no markers (normal) and x-rays and scans indicate no inflammation where it hurts. It is very common for GPs to suggest patients are not the pain and that it is all imagination.
Yes fibromyalgia is REAL and it is painful. It is thought fibromyalgia is hereditary – was one of your grand parents diagnosed with rheumatism (or fibrositis)? It is known that there are triggers, which will spark off this flu like feeling. These include stress overload, trauma, whiplash and other disasters in life. Sometimes fibromyalgia is described as a viral infection and then a post viral infection. A year later if you find the right specialist he may tell you it is fibromyalgia.
What are the symptoms? Take it from me if you are warm and comfortable in bed you do not want to get out and stumble about. You will have difficulty walking properly for the first five or ten minutes. You will have aches and pains for Britain but when you look in the mirror, you look so well.
Tired and fatigued – yes most of the time. I get half way up the stairs and vow I will never ever come down again – it is so much effort. If you use your energy in the morning you will need to rest or sit down all afternoon. Very often families and friends just do not understand this. They cannot see why you do not seize the ‘moment’ for some retail therapy, lunch and more shopping. You just cannot stand the pace. You are lucky if you can stand up long enough to wash up. Ironing – well that is a thing of the past. It just tuckers you out.
Appointments – forget them. First you will be lucky if you remember and secondly you cannot rely on your health and possibly will not make it. You hate to let people down so you do not bother to make an appointment and put up with what you have got. Forgetful – yes fibro fog or cognitive behaviour. I get confused the names of my two sons and get in awful trouble. I make a cup of tea, put milk in it, walk away and find it again three hours later. I did so want that cuppa when I made it. What is worse is if I offer a visitor a cup of tea and then forget – oophs. I even went at the right time for my doc’s appointment but a day early. Now someone has to remind me and it has nothing to do with Alzheimer’s disease.
Sleep – if only. You lay awake night after night in a “flight or fright” situation. Wide awake you are just not tired – until the morning. This is a big problem – you need proper sleep to repair your weary body. Without this your body remains weary and gets wearier.
I could go on and on about all the other nasties that cohabit with fibromyalgia - headaches, dizziness, jawbone problems, myofascial pain, irritable bowel syndrome, gerd, dry mouth, tingling arms – sorry I must not bore you. Suffice to say it is a bitch of a business living with fibromyalgia. So the sooner we can find a cure the better we will all like it. So help us fund some research – buy the CD, buy two or ten for your friends.
Be the first to play it to your friends – email me now with your address to arrange delivery and I will confirm costs and postage. (jeannehambleton @ mac.com) Sorry about the strange email address – please close the spaces. It helps me avoid some of the spam that comes my way.
