by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate
This is the story of two ladies from the UK who unlike the New York Times, just KNOW from personal experience that fibromyalgia IS REAL?
Many of you may remember Linda Allen, the fibromite ahead of her time, who was helping medical students to learn about fibromyalgia.
Linda, married, mother of two, who has had fibromyalgia since it was fibrositis, is something of an expert on this syndrome, having endured severe symptoms for a long time. She reasoned although the medical profession, or some areas of it, may not know anything about fibromyalgia, she was something of an ‘expert’ and could speak from first hand experience.
Her story attracted quite a bit of attention from fibromites worldwide due to visit hospital or their GPs, who promised to try to raise awareness with trainee doctors.
This week a new name has emerged from the Manchester area, as someone ready to follow in Linda’s ‘fibro footsteps’. Cat, as she calls herself on the ukfibromyalgia.com/forums, was so sick of pain she was looking for ways to raise awareness, shake up any apathy and get people of their butts doing something, when she heard about Linda.
Now Cat, who has suffered from fibromyalgia and ME for 20 years together with back problems and lots of arthritis, has offered herself as a Practice Patient and is waiting for her invitation to talk to medical students.
Having heard one of the members of the forum report that her physiotherapist did not believe fibromyalgia was real – he must read the New York Times – Cat was so incensed that she has decided her second target will be trainee physiotherapists.
Writing on the forum Cat said that the comments by the physio said made her blood boil. She said, “I am just a normal fibromite like you, who is going to med. students to talk about the acute pain of fibro. Next I am going to find where physios do there training! We have to fight this stinking attitude.
“If I was a witch doctor, I would cast a spell on that physio, and give him a taste of fibromyalgia. I also agree that once they decide you have got fibromyalgia, other things get passed over. Take care, keep fighting them…Cat
Impressed with Cat’s initiative Velvet, another member of the forum, wrote, “Actually Cat that sounds like a damn good idea. I live within 20 miles of a medical school, nursing college, physio training (like I said I have the pleasure and it was a pleasure of helping and being helped by a student already). Also my local college does massage so I might just telephone them all and offer myself as a guinea pig!!”
Urging Velvet to get started Cat wrote, “You go for it! It is the only way to get it sorted.
The sad thing is there are enough of us with fibromyalgia to fight especially if we all worked together! We can only do that if we work to raise awareness. There is now proof that fibromyalgia does exist! We keep reading about different things being discovered. I am doing my tiny bit to raise awareness.
“If one student out of 100 hundred studies fibromyalgia, after my words about FM in a talk, they may be the future fibro specialist. A girl who I am in touch with called Linda has already been talking to students who have never even heard of fibromyalgia!
“Doesn’t that make you wonder why? If one student chooses to study it, really seriously, what a fantastic result. If just one of us from this forum, did this in our own area, we could have specialists all around the country in the future. We do not need any skills to talk to medical students – just having fibromyalgia is enough.”
This is so true. Linda reported that none of the medical students she had talked too had even heard of fibromyalgia. A case of “Fibro what?”
The latest guidance we have from Linda’s GP, who was instrumental in starting fibromyalgia and med. students scheme, said you should offer your services as a PRACTICE PATIENT. The easiest way to do this is enlisting the help of your own GP. If this does not work, next stop is the Training Officer at your local hospital and then the Tutor in Charge of Training at the nearest medical school often attached to a University.
I have not found out how we talk to physiotherapists but I will let you know when we are all talking to med students and doctors, for it is they who will be making quicker diagnosis we hope. Who knows this might even lead to a med student eventually finding a cure for FM?
Linda had downloaded information about FM from the Internet and copied the links for the students who were pleased to receive it. If you need encouragement, guidance, help and advice about what information to take with you, I am here – just ask!
The chances are if you are reading this, you know FM is real, but are you ready to take up Cat’s Challenge or walk in Linda’s Fibro Footsteps? I would love to see this idea take off and I am hoping to talk to training doctors. Having read what Velvet and Cat had to say about physiotherapists I might try them too. Write to me: firstname.lastname@example.org