A THOUGHT PIECE

by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate

Grab a cup of coffee, sit comfortably and let us begin. The papers here in the UK this weekend have been full of justice being handed out contrary to British law by groups of Muslim elders sitting judgment on those with the same religious beliefs, in a redundant public house, someone’s front parlour or elsewhere.

Whatever your feelings may be on this I think you will have to agree with me that in this country we are in a bit of a mess it seems. The Government does not seem to know if it is on it’s head or it’s heels. I am saddened when I read about the stabbings of schoolboys, the stoning and battering of good citizens trying to protect their own property, the problems from the binge drinking, increased teenage pregnancies, the turmoil faced by broken families after quickie divorces when children need a mother and father, and the general behaviour today. My parents never talked about divorce. I doubt they could have afforded to divorce. My Dad was too busy earning a small wage to put food on the table. They had their ups and downs but separate – never. They married for better or worse. As I did. Yes I am still on my first marriage after 3 children and two grandchildren, and proud of it. How have we come to this sickness of people thinking only of themselves without considering the turmoil they leave behind them and how others have to live with their thoughtlessness? .

Yes I know I can hear you say – here she goes again – on about the good old days. I seem to be on the Soap Box again – sorry about that. But you must agree we (we those of us of a certain age) did respect our parents, grandparents, elders, teachers, and of course the ‘Bobby’ on the beat. Cheek him, and he would cuff you with his firm cape. Today the children seem fearless. As one paper described them, they have become ‘feral’ groups – wild – looking for kicks at the expense of other people.

But what about us grown ups, are we any better? Would you give up your seat on the crowded 5.30pm train to a pregnant woman – or would you think she should not be travelling at rush hour? Maybe you would offer your seat on a crowded bus to a young mother and child, a granddad or someone disabled? Do you stop and help someone who has fallen over in the street or dropped all their shopping? Or do you hurry by in case it is a trick to rob you? Does your conscience encourage you to throw a 50p coin in the hat of some poor homeless soul, so as to make you feel good?

Is it not time we took stock of the way we live our lives? This could be your grandmother, your pregnant sister, or even your child who was born disabled and it is not his fault, struggling to cope without any offers of help?

I believe the trouble today is we do not have time to stop and think about anything other than ourselves, our problems, our mortgage, career, wife and children.

While I am not a church-goer, I do believe there is something else after death. I do consider I am a Christian and I would stop and help an old lady pick up her shopping or offer comfort if she fell. I was offered the same comfort when I fell.

This does make me remember something I learned at school which for no particular reason has stuck in my mind. “Do unto others as you would have them do unto you!” I seem to think I heard this in RE (Religious Education).

When an email arrived on my desktop about a mother of three children and two unwashed smelly men, I felt the moral of the story was so strong that I should share it with others. I am told it is a true story – I really hope it is.

BREAKFAST AT MACDONALDS

I am a mother of three (ages 14, 12, 3) and have recently completed my college
degree. The last class I had to take was Sociology.

The teacher was absolutely inspiring with the qualities that I wish every human being had been graced with.

Her last project of the term was called, ‘Smile.’ The class was asked to go out and smile at three people and document their reactions. I am a very friendly person and always smile at everyone and say hello anyway. So, I thought this would be a piece of cake, literally.

Soon after we were assigned the project, my husband, youngest son, and I went out to McDonald’s one crisp March morning. It was just our way of sharing special playtime with our son. We were standing in line, waiting to be served, when all of a sudden everyone around us began to back away, and then even my husband did.

I did not move an inch… an overwhelming feeling of panic welled up inside of me as I turned to see why they had moved. As I turned around I smelled a horrible ‘dirty body’ smell, and there standing behind me were two poor homeless men.

As I looked down at the short gentleman, close to me, he was ‘smiling’. His beautiful sky blue eyes were full of light as he searched for acceptance.

He said, ‘Good day,’ as he counted the few coins he had been clutching. The second man fumbled with his hands as he stood behind his friend. I realized the second man was mentally challenged and the blue-eyed gentleman was his salvation. I held my tears as I stood there with them.

The young lady at the counter asked him what they wanted. He said, ‘Coffee is all Miss’ because that was all they could afford. (If they wanted to sit in the restaurant and warm up, they had to buy something. He just wanted to be warm).

Then I really felt it – the compulsion was so great I almost reached out and embraced the little man with the blue eyes.

That is when I noticed all eyes in the restaurant were set on me, judging my every action. I smiled and asked the young lady behind the counter to give me two more
breakfast meals on a separate tray.

I then walked around the corner to the table that the men had chosen as a resting spot. I put the tray on the table and laid my hand on the blue-eyed gentleman’s cold hand.

He looked up at me, with tears in his eyes, and said, ‘Thank you.’

I started to cry as I walked away to join my husband and son. When I sat down my husband smiled at me and said, ‘That is why God gave you to me, Honey, to give me hope.’

We held hands for a moment and at that time, we knew that only because of the Grace that we had been given were we able to give. We are not churchgoers, but we are believers.

I returned to college, on the last evening of class, with this story in hand. I turned in ‘my project’ and the instructor read it. Then she looked up at me and said, ‘Can I share this?’ I slowly nodded as she got the attention of the class.

She began to read and that is when I knew that we as human beings and share this need to heal people and to be healed. In my own way I had touched the people at McDonald’s, my son, instructor, and every soul that shared the classroom on the last night I spent as a college student.

I graduated with one of the biggest lessons I would ever learn – unconditional acceptance. Much love and compassion is sent to each and every person who may read this and learn how to love people and use things – not love things and use people.

She added an angel wrote many people will walk in and out of your life, but only true friends will leave footprints in your heart. To handle yourself, use your head. To handle others, use your heart. God gives every bird it’s food, but He does not throw it into its nest.

So the moral of this story is – we have got to work at it. Think about if you were in their situation? Consider if you were a mother with a small child carrying groceries and struggling and standing on a crowded bus. I will leave you with this thought – there must be more to life than thinking about ourselves.

I would love to hear your comments! What do you think? How can we change this ‘sickness’?
Talk soon. Jeanne.

FMS Global News

Fibrohugs Support

Tenderpoints Newsletter

GROWING SUPPORT FOR FIBROMITE AHEAD OF HER TIME

by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate

You may remember the story about Linda Allen, a UK fibromite who in spite of being severely disabled with this invisible disability has been raising FMS awareness among medical students. Her gracious offer to help anyone willing to follow her example and spread the word has resulted in a flurry of emails, mostly from the USA and Canada.

While Linda and I are both willing to help, advise and encourage anyone from anywhere to pick up the gauntlet and run with it by talking to medical students, it is surprising that so few UK sufferers have written. It is here that we believe many GPs are still blinkered as far as diagnosing fibromyalgia is concerned.

For some long time those with this awful syndrome have been telling me that their doctor suggests it is all in their head. Trust me I am a fibromite – you are not imagining the aches, pains, chronic fatigue, sleeplessness, cognitive problems and many of the other nasties that cohabit with fibromyalgia. These ARE the symptoms.

All this time I have been thinking that in Canada and the USA, where there are so many knowledgeable experts in this field, fibromites were being recognised and diagnosed far more quickly than the years it takes here in the UK.

The moral behind this thinking is, we have a huge worldwide job to raise awareness about fibromyalgia, not only in the UK but just about everywhere. With this is mind it is even more important that you contact your local health authority or training hospital and offer to be interviewed by medical students and answer questions about your fibromyalgia and any other dispositions you may have living with your FMS. I hope they will jump at the opportunity. If they do not, tell us and we will name and shame them.

I often hear fibromites say, “It is so good to be able to share my problems, pains and concerns with someone,” – here is the golden opportunity – and you can talk about yourself and your health and you could be helping to find cure. Some of those young doctors may decide to specialise in this field. Whatever they do they will have an inside knowledge of fibromyalgia and be able to recognise FMS albeit in their own surgery, in accident and emergency clinic, or a hospital ward.

If you can do this it would be a giant step for fibromyalgia and would encourage more research as the world hears about the pain we suffer. It really is up to you – Linda and I cannot do it alone.

LINDA’S ANSWERS

Linda has asked me to thank everyone who has written to her like most families with young children she has struggling to get ready for Christmas with all the trimmings to delight her young son. Linda is making a great effort to reply to you as soon as she can.

We are delighted with the support so far and hope details of these emails will encourage you to go further with raising awareness.

Jane wrote, “One minute you are pleased that there is someone out there that has fibro then you feel bad that someone must hurt like you do”. 

Bambi sent an email saying, “You are my inspiration! I just read about you in an email I receive from Tenderpoints. I meant what I said.”

Bambi who lives in the States and suffers with fibromyalgia, rheumatoid arthritis, Lupus, chronic pain syndrome, and has undergone a number of operations, is taking “a variety of med’s and still going through the motions of trying to find what works best for me.” She writes about her journey through medications and diagnosis leading to the sad and frustrating times that so many FM sufferers go through.

Regardless of her pain she writes, “When I was reading about you, all I kept thinking was that I’ve found my mentor! You see, I am a 44 year old, mother of 2, wife of 22 yrs……. for too many years I have been battling the stigma’s of living with chronic pain. I won’t go into an entire boring full biography about myself! Let me just tell you briefly, I’m an ex-dancer…jazz, ballet, that kind of dancer! HA!…..most people assume with a name like ‘Bambi’, it’s another kind of dance I used to do!   I’m a freelance artist, who on a good day is lucky enough to work on sketching, painting, or some kind of inspiration I may have. I have a positive outlook the majority of the time.

“I say it this way because I feel it’s important to allow yourself to have those days that are bad, let your body heal itself, rest, etc. We have earned the right to every now and then have a little ‘bitch’ session. I think it is healthy to vent every now and then! I also feel though it is our fault we have what we have, we have to learn to accept what we can’t help, (not give into it though!) It is not anyone else’s fault that we feel bad, so why should they have to suffer too. I try to keep a good sense of humor, a smile even when I hurt….I can be in pain but still be glad I have my family.

(Hi Bambi I am the writer with FMS and it is not your fault. It is now thought to be genetic and if you ask your parents and grand parents you may find some have suffered very bad arthritis, rheumatism or fibrositis. If we have the gene it only takes a trauma or stress for an A type personality – workaholic – to trigger the fibromyalgia. I write this as a patient with no medical training, but this is what I have heard from medical experts. However I do agree you should not take your suffering out on other people and a positive outlook is so very important. Jeanne)

“Anyway, my point is that, through out this entire “journey” of chronic pain, I figured there is someway I can help, so other people don’t have to go through what I have had to endure! I admire what you and your Doctor are doing and would love to do the same!….I know, I apologize, I could have said this at the beginning, in one sentence!”
Bambi signed her email with “peace, laughter & miracles”.

Linda told her, “You have to have a sense of humour to survive being fibromyalgic…. life is for living is what I say and I refuse to sit in a chair and rock for the next 50 years!! I am not into feeling sorry for myself at all. It is counter productive and I am with you on the positive attitude thing, you have got to have this or you will go under. So you sound like an ideal candidate for doing what I am doing, chatting to medical students on an informal basis and educating them about ourselves, our condition and the whole shebang we go through for a diagnosis, treatment, support and help. Think about it, you’d be fab!!”

Catherine from somewhere in New York who read Linda’s story in Tenderpoints (from Fibrohugs) thanked her so very much for what she is doing for all FMS patients around the world.

She wrote, “I see a rheumatologist at a teaching hospital here in upstate New York, and I think I shall print this for him.  He always wants to learn and I wonder if I would ever have your strength.  Even if I didn’t, your story may be just what I need.”
Catherine signs herself a partner in FMS/CFIDS.

Karen has had FMS for seven years and writes, “When I read about what your doing, I thought that this lady is doing exactly what I have been wanting to do for years now. And I go for treatment for the perfect place for it. That is Oklahoma University Research Hospital. We call it OU for short. But my thinking has always been that this is such a complex disease that you would have to be a teacher just to discuss it, because 15 minutes with your GP just doesn’t get it.

“And only someone with this disease can tell you in detail anything about it and it takes a long time to do that because there is so much to tell. I would love to share my knowledge with some soon to be Doctors. This is where I know you will understand that we know a lot more than they do about FMS because we were forced to learn about what was wrong with us because nobody could tell us. All I ever heard was, ‘I am sorry for you but I can’t help you and good luck. Hope you don’t end up in a wheel chair.’

“I have never written to anybody else that has this disease, but your story was the one that turned on the light. I hope to hear from you, God Bless You.”

Mary who works in the medical profession in the States said she was given news of Linda’s story by a holistic nurse who has been helping her with pain control.
Diagnosed with fibromyalgia after many years of ‘non-diagnoses’ she said the problem was not only an unawareness on the physicians part, but her own unwillingness to accept it because of the attitudes I have encountered for quite some time of the doctors who label FMS as a non-existent disorder.”

Mary suggests these doctors think fibromyalgia is something, “We give patients to pacify them when they need a diagnosis”. In other words – for all the hypochondriacs out there.

“It angers me to think about it now, because these physicians have labeled me as such and put me on anti-depressants. Now I hear behind my back from their nurses and assistants that they diagnose fibromyalgia but don’t believe it,” she said adding she was frustrated and disillusioned with medicine.

Linda suggests the physician “desperately need educating into the severity of the condition you deal with 24/7. I could send you some information specifically for doctors to print off if you like? Maybe it would give them a kick up the butt? It couldn’t hurt to try eh?”

Joan from Canada said she could relate to Linda’s fibromyalgia and back problems. She suggests, “I have a specialist here in Toronto who insists fibro is related to disruption of the discs in the back and neck. Certainly the activity and especially horseback riding would contribute to your fibro. I have been on long term disability for 12 years now and everything she has directed me to do has been right. We do walk a very fine line in fibro. If we do too much we will relapse. 

“I admire the work you are doing in educating young would-be doctors and students. It is something I have wanted to do for a long, long time. I just did not know quite how to get started. 

“I felt such a pull in my heart when I read your bio, I just wanted to share with you what I believe has helped me.  Maybe it will help you too! We are the same age. Too young to let life pass us by!” said Joan.

Gloria who I think is also from the States offered congratulations to Linda for stepping up and adds, “I, like you, have had fibromyalgia since about the 1980′s, maybe even longer.  I was (and still am) very active, although I tire easily.  The specialty doctor that I saw at that time discovered my “trigger points” but he did not have a name for the illness.  Unfortunately, my regular GP was not the greatest.  I had a terrible flare-up about 7 or 8 years ago.  I went to my GP with a list of my symptoms.  He looked at the list, looked at me and told me that “someone who writes a list like this is mental.”  This was someone that I trusted my health with for over forty years.  I quickly changed physicians.  I started with an internist about a month later, gave the same list to him.  He took x-rays and blood work, sat for an hour asking me questions and told me to return in three weeks.  When I returned, he had all of the test results in hand.  We talked some more and he mentioned “myalgia.”  I asked him if he said fibromyalgia.  He said, “No, do you think you have that?”  I said I don’t know, but I had just heard of it.  He tested the trigger points and diagnosed me that day with fibromyalgia.  It has been a blessing to find a doctor that listens and is empathetic to the pain that FMS involves. I live with pain on a daily basis and some days are worse/better than others.”

This is just another story which shows just how important it is to educate the medical students and the young doctors who are willing to listen.

Jackie has such empathy with Linda she suggests, “I felt as if I were reading my life and medical condition on the page.  I have written to the FFC here in the states but have gotten no reply as of yet.  They have several centers here in the US but none are very close to me and you have to do your first visit in person, after that they do something either thru mail or something.  But it’s too hard for me to travel, as you probably know. I think my fibro was partially caused by having rheumatic fever twice as a child.  In my teens I had great pain, then they called ‘growing pains’. 

“I like you was active even after diagnosis until I just could not do it anymore.  It hurts so bad emotionally not to be able to do what I used to do. 

“In the past my son in law said that my house was so clean you could eat off the floors.  I am not able to do that anymore.  Nor do the things I want to do. And I agree with you that a loss can cause a real fibro flare, because I lost my youngest grandson age 16 in June.  The only way I can survive that is knowing that he is with God.

“Thank you so much for your article.  Just having someone out there that I can  “cry” to means a lot. Now I have to go, my back is hurting so bad. Love. A sister in fibro,”

Brenda who I think is from California (emails give little away) wrote and said,
“Thank you for your story particularly the “letter to normals” that I have sent this on to friends and family as it sums up how I feel. I would like to help spread the word. What can I do to help?”

Although Brenda believes her GP will not be very helpful she told Linda, “I do have an appointment with my rheumatologist in January so will ask her if I can talk to med students.”

Brenda who labels FMS as ‘the beast’, tells Linda. “It is very difficult here to get anything prescribed for pain as people have a tendency to sue their doctor if they get addicted to the drug. I had to give my GP a letter promising him not to sue him so he would give me a script for valium so I could sleep at night as the flexeril was no longer working. Anyway I am taking 4mg at night and it has helped tremendously so far. But I am stuck with over the counter pain killers which on bad days just aren’t effective. I have bought a couple of books on fibromyagia recently and it seems there is more research money being invested as FMS is on the rise.”

Encouraging Brenda to take up the challenge Linda replied, “I started speaking to medical students about our much misunderstood condition as they need to do ‘practice consultations’ as part of their training and speak to people who have a chronic pain condition.”

Betty who wrote to Linda about specific enzyme based natural medication which had worked for her own for back pains, added, “Today’s doctors still have no answers as I have fibromyalgia and chronic fatigue plus the latest visit to the doctor has her looking at something called Polymyalgia. I think that is what she called it. The only thing that helps that is Prednisone and I refuse to go on steroids, so I’m hoping the blood tests come back negative for that condition. Take care… and keep the faith.”

Replying Linda thanked Betty and is humbled by her kind words. She added the message “reaffirms my faith in humanity and for that I thank you from the bottom of my heart”.

Having invited the world to keep in touch with us, it occurs to me that as fibromyalgia fighters we should perhaps come together as a VIRTUAL FIBROMYALGIA AWARENESS GROUP.

This would allow us all to enjoy the successes of others and help with the few disappointments, if any, of trying to raise awareness about this rotten invisible disability. We will protect your privacy and will not divulge or print anything other than your first name and maybe the country in which you live…unless you instruct us otherwise or include your own email in the text.

If there is enough support for the idea we thought that for membership of our elite VFAG you should have FMS, CFS/ME or be a carer for someone with these disabilities. We will do our best to print your stories – maybe not always in full and will reserve the right to edit anything which may be deemed as offensive or likely to have any legal connotation.

I would ask you to send me your emails with information your endeavours to raise awareness with medical students or doctors, or in any other way, highlighting any publicity you have managed to achieve, with copies to both Linda and I.

We hope you will share your triumphs with others and we will ‘move mountains’ and raise awareness. With enough support we will start our own weblog where you will be published and able to tell our friends.

We are depending on you. Please email me at jeannehambleton@mac.com and Linda at lindajaneallen@hotmail.co.uk and with your success stories. You can also find me on
http://jeannehambleton77.wordpress.com

Take care. Keep well and go to it. Jeanne

FMS Global News

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Tenderpoints Newsletter

Detroits Best Music

MAKING MEMORIES AND SOBERING THOUGHTS FOR FIBROMITES

by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate
 
I well remember how much I enjoyed Gene Kelly’s performance in the film “Singing in the Rain”. It made me feel so good, in spite of the bad weather, and between us, I really felt like being silly, running outside in the rain and singing my head off. But as my dear late Dad would have said, “Here’s a penny. Go in the next street!” That does not say much for my voice but the thought was there.

It is odd but these days you seldom hear children singing while playing. Do they still teach singing in school – all those pomp and circumstance songs like ‘Jerusalem’, ‘Land of Hope and Glory’ to name but two? Most children seem to know, ‘You’ll never walk alone’, but I guess that is down to the football fans. I seem to think we were encouraged to sing to get some fresh air in our lungs. I even remember doing breathing exercises at school – that must have been when Adam was a lad!

It also seems as if most children do not want to play in the rain and hate to get wet. What happy childhood memories come back when you see a picture of a young child in a hooded raincoat with wellies splashing in big puddles and giggling? I would think Health & Safety and the PC (Politically Correct) Brigade would have something to say about that these days – too dangerous – the child will slip over and hurt itself.

All this talk about singing and dancing in the rain brings me nicely to a little story, which I hope you will enjoy. To be truthful I am hoping to start an epidemic of people singing and dancing in the rain and getting them washed while they are at it. We could change the words, “I’m singing and washing in the rain”. Read on and you will understand where I am coming from. Regrettably I cannot remember which fibromite sent it to me – fibro fog – but thanks.
 
IT’S RAINING

A little girl had been shopping with her Mom in Zellers. She must have been 6 years old, this beautiful red haired, freckle faced image of innocence. It was pouring with rain outside the store. It was the kind of rain that gushes over the top of rain gutters, so much in a hurry to hit the earth it has no time to flow down the spout. We all stood there under the awning and just outside the door of Zellers.

We waited, some patiently, others irritated because it messed up their hurried day.  I am always mesmerized by rainfall.  I got lost in the sound and sight of the heavens washing away the dirt and dust of the world. Memories of running, splashing so carefree as a child came pouring in as a welcome reprieve from the worries of my day.

The little voice was so sweet as it broke the hypnotic trance we were all caught in.
“Mom, let’s run through the rain,” she said.

 ”What?” Mom asked.

“Lets run through the rain!” she repeated.

“No, Honey. We’ll wait until it slows down a bit,” Mom replied.

This young child waited about another minute and repeated: “Mom, let’s run through the rain,”

“We’ll get soaked if we do,” Mom said.

“No, we won’t, Mom.  That’s not what you said this morning,” the young girl said as she tugged at her Mom’s arm.

“This morning?  When did I say we could run through the rain and not get wet?”

“Don’t you remember?  When you were talking to Daddy about his cancer, you said, ‘If God can get us through this, He can get us through anything!’”

The entire crowd stopped dead silent.  I swear you couldn’t hear anything but the rain.  We all stood silently.  No one came or left in the next few moments.

 Mom paused and thought for a moment about what she would say.  Now some would laugh it off and scold the child for being silly.  Some might even ignore what was said.  But this was a moment of affirmation in a young child’s life:  a time when innocent trust can be nurtured so that it will bloom into faith.

“Honey, you are absolutely right.  Let’s run through the rain.  If GOD lets us get wet, well maybe we just needed washing,” Mom said.

Then off they ran.  We all stood watching, smiling and laughing as they darted past the cars and, yes, through the puddles.  They held their shopping bags over their heads just in case.  They got soaked.  But they were followed by a few who screamed and laughed like children all the way to their cars.

And, yes, I did.  I ran.  I got wet.  I needed washing.

Circumstances or people can take away your material possessions.  They can take away your money, and they can also take away your health.  But no one can ever take away your precious memories.  So, don’t forget to make time and take the opportunities to make memories everyday.

“To everything there is a season, and a time to every purpose under the heaven.” Ecclesiastes 3:1

I hope you still take the time to run through the rain. They say it takes a minute to find a special person, an hour to appreciate them, a day to love them, but then an entire life to forget them. Share this story with the people you’ll never forget.  It’s a short message and it will let them know that you’ll never forget them.

If you don’t tell anyone, it means you’re in a hurry.  A pity! Take the time to live!!!

Keep in touch with your friends.  You never know when you’ll need each other or you no longer can keep in touch – and don’t forget to run in the rain!

FMS Global News

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Tenderpoints Newsletter

CO-PROXAMOL BUNGLED WITHDRAWAL IS A FARCE

by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate

PULSE, the search engine website developed by GPs for GPs, suggests the co-proxamol “bungled withdrawal is not working for patients or doctors” and it is turning into a farce.

This was announced this week on the PULSE website together with great news that GPs will accept legal responsibility to prescribe co-proxamol in the New Year according to a survey by Cegedim Strategic Data

This news was announced under the heading GPs get legal alert as co-proxamol phase-out stalls.

PULSE also warns that GPs could face huge medicolegal risks after 1 January, as tens of thousands of patients throughout the UK continue to receive prescriptions for co-proxamol.

An investigation by PULSE reveals that the GPs support for co-proxamol is due to concerns about alternative painkillers. The survey of 90 practices showed that in spite of the Government pressure to discontinue prescribing the painkiller some 60,000 patients were still taking co-proxamol in October.

Although the website outlines the legal responsibilities that doctors may face if they continue to prescribe co-proxamol after the withdrawal PULSE suggests in practices surveyed there were plans to take patients off co-proxamol on January 1st, but as many as 39% reported they would continuing prescribing the drug on a named patient basis.

The data from the survey revealed that on average GPs would continue to provide co-proxamol for 14 patients for each practice as “no adequate alternative” could be found.

The Chairman of the GPC committee responsible for prescribing Dr. Bill Beeby is quoted as saying it is “very difficult” to take patients off co-proxamol, especially elderly people who have been taking the painkiller for some time.

The President of the Primary Care Rheumatology Society, Dr. Adam Bajkowski, felt it was wrong to suggest paracetamol could provide an acceptable alternative for co-proxamol.

Dr Bajkowski is quoted as saying he had yet to meet a jobbing doctor who believed it is a good idea to withdraw co-proxamol.

But the debate continues as one doctor in Birmingham suggested the withdrawal of this drug was long overdue.

There is a box on the PULSE website to make comment but you must sign in and become a subscriber (no charge) before you can complete the box. I hope you will make your feelings known to PULSE and to those of us here who are striving to reverse the withdrawal and make co-proxamol legal again. The website address for PULSE is at the end of the story.

In another story also posted today called Withdrawal Symptoms PULSE claims that “rarely has a medicine so divided GPs” and indicates the withdrawal is turning into a farce. PULSE also suggests the bungled withdrawal is not working.

The website suggests that GPs who decide to prescribe the contentious painkiller do so at their own risk, with the legal responsibility resting on their own shoulders.

PULSE also adds that whether co-proxamol is seen as good guy or bad, the painkiller needs to carry the strongest possible warnings over its risks of overdose and addiction.

To read the full report from the Pulse website log on to:

http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4116293&c=1

My other great news is UK Conservative Members of Parliament, Nick Gibb, (Bognor Regis and Littlehampton) and Andrew Tyrie (Chichester) have joined the fight to save co-proxamol and shares our concerns about the withdrawal.

They has promised to raise this burning issue with MP Dawn Primarolo, Minister of State (Public Health), Department of Health, who responsible for drugs an drug treatments. My personal thanks to these Members of Parliament for giving us their time to support this battle. We look forward to hearing more. Four other MPs have merely acknowledged receipt of the message. Several others have ignored it.

This news of the support of GPs, issued by PULSE, has been shared with Nick Gibb MP, Andrew Tyrie MP, Rob Wilson MP (chairman of the All Party Parliamentary Group for Fibromyalgia), John Baron MP (Billericay) Shadow Health Minister and the two MPs who have already raised questions in the House concerning the withdrawal of co-proxamol – Anne Begg MP (Aberdeen South) Member, Work and Pensions Committee and Chairmen’s Panel Committee; and Dr Howard Stoate MP (Dartford) a Member of the Health Committee.

I will leave you with this burning question – if co-proxamol has been used for the last 50 years, without any grave concerns; and if 72,000 people have been prescribed this painkiller over a number of years; why suddenly is there a great need to withdraw it, especially when it appears there is little support from the GPs for this action?

We must acknowledge that co-proxamol has been used in a number of suicides– but there are so many other drugs on the market, which would be just as lethal if taken in huge quantities. This is no reason to withdraw co-proxamol. A similar battle raged some years ago over paracetamol – but that battle was won. My hopes are this one will also be won.
Maybe you will ask your own MP this question? You do not have much time -withdrawal begins officially on 1 January 2008 – New Year’s Day. Please let us have your views.

Jeanne

FMS Global News

Fibrohugs Support

Tenderpoints Newsletter

CONGO ON DOGGIE DEATH ROW GETS WORLDWIDE SUPPORT AND TV PUBLICITY FOR HIS REPRIEVE

by Jeanne Hambleton © Without prejudice
NFA Leader Against Pain

Last month I wrote the sad story of a German Shepherd dog called Congo who had been sentenced to death, and who is now on a temporary reprieve awaiting a final verdict.

His crime was doing what all dogs do – protecting the ones he loved – his family while in his own garden. Congo was alleged to have attacked a landscaper who the owners claim had attacked his mistress, and his puppies and the female German Shepherd.

On a video of a CBS TV report from the American News Channel 25 Congo was shown playing ball as a normal family pet with the James children, while posing no threat to the TV film crew or the on scene reporter in the 10 acre garden where the dog is confined pending sentence.

Congo is still awaiting news of whether he will be let off or if he will be condemned to death for doing what comes naturally, protecting his own family at home.

Meanwhile the court is reported to have said nothing will happen to Congo until an appeal is heard by a higher court. It is thought this will now be scheduled for the New Year.

While Congo waits unaware of what the future might hold, worldwide support to save him pours into Princeton while people continue to sign the petition to SAVE CONGO. The James family who are glad of the support from dog lovers everywhere who believe Congo did the right thing protecting his family, but others ion the television interview are quoted as saying they believe any dog that bites is unsafe.

As a reporter I would ask, ‘Is this regardless of the circumstances?’

To me this sounds like sentencing someone to death before you have actually listened to what they are saying. Congo was after following his natural instinct – to protecting. It is alleged this was not an unprovoked attack. Here in the UK we are considered innocent until proven guilty – hopefully with a fair trial. But I understand one court official has confirmed that Congo will have a fair hearing.

Glen and Elizabeth James, Congo’s owners, have vowed to fight all the way to save their two-year-old beloved pet called.

I am delighted CBS TV have highlighted Congo’s story on their website and included a video with pictures of Congo and an interview with the family.

My thanks to Diane sending me the fist news about Congo and to FMS Global News who circulated the news worldwide to help us gain support to SAVE CONGO.

I will be keeping an eye on this story and let you know if Congo’s story has a happy ending. I hope so. Talk soon Jeanne

To look at the recent video of the story a reported by CBS TV News follow this link.

http://wcbstv.com/seenon/german.shepard.doggie.2.566960.html

If you would like to read the original stories published on November 15 and 20 log on to

http://jeannehambleton77.wordpress.com/2007/11/15/a-fibromite-and-a-woeful-tail/

http://jeannehambleton77.wordpress.com/2007/11/20/congo-gets-temporary-reprieve-while-judge-receives-death-threats/

FMS Global News

Fibrohugs Support

Tenderpoints Newsletter

Dear Editor,

This year we are helping to support the mission of the Arthritis Foundation by raising money and participating in the Arthritis Walk.

Our team Looking Good is walking in honor of Nancy Clay, BSN RN. She has taught us through experience and expertise. In addition Nancy has brought resources and speakers to us to help us learn how to help ourselves positively while living with our illnesses. We will be walking together at Freedom Park in Morganton, NC on September 22, 2007. Registration at 9:00am and walk at 10:00am. We’d love to have you join us!

Did you know that arthritis is the nation’s leading cause of disability and affects 66 million people? One in three adults and 300,000 children have arthritis or chronic joint pain, costing the U.S. economy more than $86.2 billion annually.

We have decided to make a difference. We are committed to raising $_ 1000_ to help prevent, control and cure arthritis. You can also make a difference by joining our team and walking with us or by donating funds to help us reach our goal. If you’d like to donate, please make your check out to the Arthritis Foundation and mail it to me at 118 Torrence Cir. NW, Lenoir, NC. Please note Looking Good Team on the for line. Thank you in advance for your support! Please call Lindy 828 754 2064 or Nancy for information.

Sincerely,

Looking Good Team Captain

Lindy Wilcox

“Love bears all things.” ICor.13:7
“God is good! All the time!”

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FMS Global News

Tenderpoints

Fibromyalgia Support

Opioids for managing chronic non-malignant pain: safe and effective prescribing.

Kahan M, Srivastava A, Wilson L, Mailis-Gagnon A, Midmer D.
Addiction Medical Service, St Joseph’s Health Centre, Toronto, Ontario, Canada. kahanm@stjoe.on.ca

OBJECTIVE: To review the evidence on safe and effective prescribing of opioids for chronic non-malignant pain.

QUALITY OF EVIDENCE: MEDLINE was searched using the terms “opioid effectiveness” and “adverse effects.” There is strong evidence that opioids are effective for both nociceptive and neuropathic pain, but limited evidence that they are effective for pain disorder. There is little information on their effectiveness at high doses or on the adverse effects of high doses.

MAIN MESSAGE: Opioids should be initiated after an adequate trial of acetaminophen or nonsteroidal anti-inflammatory drugs for nociceptive pain and of tricyclic antidepressants or anticonvulsants for neuropathic pain. Patients should be asked to sign treatment agreements and to give informed consent to treatment. Patients should experience a graded analgesic response with each dose increase. Titrate doses of immediate-release opioids slowly upward until pain reduction is achieved, and then switch patients to controlled-release opioids. Most patients with chronic non-malignant pain can be managed with<300 mg/d of morphine (or equivalent).

CONCLUSION: Opioids are safe and effective for managing chronic pain.

PMID: 17279219 [PubMed - indexed for MEDLINE]

FMS Global News

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Tenderpoints

Prevalence of Interpersonal Abuse in Primary Care Patients Prescribed Opioids for Chronic Pain.

Balousek S, Plane MB, Fleming M.

Department of Family Medicine, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA.

BACKGROUND: Interpersonal abuse is associated with clinical problems including chronic pain disorders. OBJECTIVES: The objective of this study is to describe 30-day and lifetime prevalence of emotional, physical, and sexual abuse found in men and women prescribed opioids for chronic pain.

DESIGN: Cross-sectional interview is the design of this study.

PARTICIPANTS: Patients, 1,009, currently prescribed opioids for chronic noncancer pain. They were recruited from the practices of 235 Family Physicians and Internists in Wisconsin. The most common pain diagnoses were arthritis, low back pain, headache, and fibromyalgia/myofascial pain.

MEASUREMENT: Data for this secondary analysis on rates of interpersonal abuse were based on 3 questions from the Addiction Severity Index (ASI) regarding 30-day and lifetime emotional, physical, and sexual abuse.

RESULTS: Forty-seven percent of women and 22% of men reported a history of lifetime physical abuse. Thirty -five percent of women and 10% of men reported lifetime sexual abuse. Binary logistic regression identified the following variables associated with lifetime physical abuse: female gender (RR 2.81, CI 2.01-3.94), age 31-50 (RR1.77, CI 1.30-2.41), Caucasian (RR1.67, CI 1.19-2.35), increased psychiatric symptoms as measured by the ASI (RR 2.14, CI 1.56-2.94), and lifetime suicide attempts (RR 3.98, CI 2.76-5.74).
CONCLUSIONS: This study reports prevalence of abuse in both men and women prescribed opioids for chronic pain in primary care settings. Subjects who report experiencing interpersonal abuse also report significantly higher rates of suicide attempts and score higher on the ASI psychiatric scale. Screening patients taking opioids for chronic pain for interpersonal abuse may lead to a better understanding of contributors to their physical and mental health.

PMID: 17641933 [PubMed - as supplied by publisher]

FMS Global News

Global Health Vision

Tenderpoints

SOUNDING OFF ABOUT FIBROMYALGIA AWARENESS WEEK

By Jeanne Hambleton© UK Fibromite

I know I am always going on about raising awareness and fibromyalgia and this is especially important as far as the UK Government is concerned. Although we have E Petitions allegedly for the eyes of the Prime Minister, asking for support for various aspects of fibromyalgia, I have my doubts as to whether these will actually achieved any funding for research or recognition for FM – oh me of little faith.

Two of the 4 E Petitions about fibromyalgia on the No.10 Downing Street website will end this month (August) and as a supporter I am hoping to receive comments from the No.10 Downing Street web team (almost certainly not the Prime Minister). I feel sure the Prime Minister does not have time to read all the E Petitions – too busy with his politics. I almost have the impression the E Petitions were designed to save the postman delivering hundred and hundreds of letters which someone has to open and read, although rumour has it the idea of E Petitions was thought to be a bad idea.

As a matter of interest my new E Petition is to help replace those that are about to expire and can be found at the following website. It only takes a minute to do and you will feel go you have supported us. PLEASE would you please sign? I need 1000 signatures before it will be considered – 2000 would be nice. Tell your friends and family PLEASE. I am not on commission!

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

But my reason for writing is other ways to raising awareness during Fibromyalgia Awareness Week.

For us here in the UK and possibly the world over, the 8th to 15th September is Fibromyalgia Awareness Week. We do still of course have another annual event on 12th May – World Fibromyalgia Awareness Day. If you did nothing on that day to further the cause, now is your big chance.

Yes you have guessed it. I am going to talk about doing your bit for this FM Week. Raising funds would be a plus but raising awareness is far more important. Not sure about you, but I am pig sick of people looking at me and saying, “Fibro what?” If you listen carefully you can hear them thinking, “Poor girl – I wonder how long she has to live?”

If you are going to dismiss that thought be sure to tell them, we may not die from FM but as sure as eggs are eggs we will live with the pain for the rest of our lives or until someone finds a cure. (That is why you are signing the E Petition!)

What can you do? I have made several suggestions below with varying amounts of effort, so no excuses please.

NOT TOO HARD WITH FAMILY HELP
Find everything you have in your home that refers to fibromyalgia and invite your friends and neighbours to a need-to-know coffee morning, or afternoon tea and cake (if you don’t do mornings!) You can talk about each item connected with FM, or ask how the last 10 years has been for each of your visitors. When it is your turn you can recall what you used to do and how disabled you are now. Remind them it is an invisible disability and although you look so well you feel so awful.
Keep it bright and light with a few funny fibro stories. This event could even provide you with a few fit helpers for the future if you stage a fund raising event for FM to help your local Support Group.

ARMCHAIR EFFORT
If life is a struggle and a coffee morning is all too much, you could start your own letter writing campaign. Here in the UK you could write to your MP or in the States try your Senator? The MP’s address will be in your local telephone book. If you cannot find it ring the local paper. If you are feeling inspired you could write to the Prime Minister himself – Gordon Brown PM, 10, Downing Street, London, SW1A2AA, or email his assistant james.bowler@hm-treasury.gsi.gov.uk. David Cameron can be reached at camerond@parliament.uk. I am guessing here but I would think that Sir Menzies Campbell could be reached using campbellm@parliament.uk

The mail address of most MPs is their surname followed by the initial and the address – for example the Health Minister Alan Johnson MP – his address is johnsona@parliament.uk.

If you are using snail mail send your letter to your MP at House of Commons, London, SW1A 0AA

For information about websites, biographies and email addresses search for your MP in alphabetical order at http://www.parliament.uk/directories/directories.cfm

If you do not know who your MP is try http://www.theyworkforyou.com/ and type on your postcode. This will produce a message box, so have our message ready to cut and pate into the box.

If you think you have written a good letter to the PM, the Health Minister and your MP about your FM appealing for Government support for research to find a cure, and speed up diagnosis, including details of your life as a person with an invisible disability – the symptoms – pain 24/7, chronic fatigue, sleeplessness, cognitive problems, IBS, RLS and all the other nasties – send a copy to the Editor of your local paper. Ask him to print it with the readers’ letters, adding your own comments about what you hope the PM will agree. It is a good idea to use bullet points for the symptoms (easier to read).

Now you are on roll! Why not send a copy to your local radio station and the regional TV station? You never know they just might wonder – like everyone else – exactly what fibromyalgia means.

GOING OUT TO THE PUBLIC
If you access to lots of fibromyalgia literature you could ask your local superstore manager if you can stand near the entrance one busy afternoon and hand out literature. If you have friends you could have a table and chairs with fibromites who can talk about the syndrome and maybe encourage anyone interested to join the Group.

EDUCATING STUDENT DOCTORS
By now you should be full of confidence and really ready to go anywhere to tell your story. Contact you local PCT – Primary Care Trust (details in your local telephone book) – who are responsible for the hospitals and doctors in your area. Ask if you could talk to a class of student doctors about fibromyalgia from a patient’s perspective? You could answer their questions and help them become more knowledgeable about diagnosing FM for future patients. You would indeed be raising awareness by doing this, as so many GPs believe it is all in our head. The Fibromyalgia Association of the UK, http://www.fibromyalgia-associationuk.org, has prepared literature for the medical profession. I believe the American NFA – http://www.fmaware.org – also had medical literature for doctors.

Yes we now believe it is all in our head – but not as the GP suggests. Does your GP think it is in your imagination and that you are a mad malingerer? If so tell him it is now said that FM is due to a chemical imbalance in the brain.

My final thought would be to festoon your house or garden with balloons with a sign in the window saying “Happy Anniversary Fibromyalgia”. Someone is bound to ask you who is Fibromyalgia. Take a photograph and send it to the local paper with a caption saying you are celebration Fibromyalgia Awareness Week. I feel sure you will find this an uplifting experience and enjoy the fun. At the end of all this raising awareness you will feel you have achieved something by spreading the word – which as we know is FIBROMYALGIA.

Do write and tell me about your achievements – we can then have another go at more publicity for FM.

FMS Global News

Tenderpoints

Global Health Vision

The classification of fibromyalgia syndrome.

Müller W, Schneider EM, Stratz T.
Rheumatologische Forschungsabteilung, Weihermatten 1, 79713, Bad Säckingen, Germany.

As has been shown by a number of working groups, primary fibromyalgia syndrome does not represent a single clinical entity. It is possible to distinguish between a subgroup with high pain sensitivity and no associated psychiatric condition, a second and a third subgroup characterized by depression associated with fibromyalgia syndrome, and a fourth group with somatoform pain disorder of the fibromyalgia type. Mild inflammatory processes must be considered as the cause in the first group, while depression is combined with fibromyalgia in the second and the third group. In the fourth group, serious previous or still existing psychological problems or also insufficient coping with illness symptoms must be regarded as the reason for pain chronification. Group 1 benefits from a blocking of the 5-HT3 receptors by means of tropisetron, for example. This does not only affect pain chronification but also the inflammatory process itself. Group 2 and 3 needs antidepressant treatment, whereas the focus should be on psychotherapy in group 4. Groups 1, 2 and 3 will also profit from multimodal physical treatment programs, to a certain extent this applies to group 4 as well. So-called mixed types require a combination of therapeutic measures.

PMID: 17653720 [PubMed - as supplied by publisher]

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