FM CONFERENCE AND PAMPERS 2011 ANOTHER BIG HIT

By Jeanne Hambleton ©

The Fibromyalgia Conference and Pamper Weekend in April on the south coast was another great success inspite of cancellations by the Americans. Described as a ‘coalition’ conference many Group Leaders played a major part in collecting stage payments at group meetings over several months, to enable delegates to come to conference. Without the support of those Leaders, many living on benefits would have been unable to come. Others found their local Rotary Club willing to help fund their visit to the conference. So many people pulled together to make it happen and during the ‘fond farewell’ it was clear that they all enjoyed themselves.

The conference brought together two major charities, FMA UK and FMS SAS (Surrey and Sussex) to work with FibCon independent conference Folly Pogs team, striving to raise funds for research to find a cure. The success of the event was due to those who supported us and a few dedicated people who desperately want to see a cure for fibromyalgia.

It was another ‘win win’ event for delegates with 14 speakers, 14 work-shops, with many presentations provided by fibromites with a story to tell. There were also exercise programmes and good evening entertainment. Delegates are still talking about the fibro fillies horse racing and racing pigs with knitted woollen jockeys, the Friday highlight. Saturday saw the Cockney Barrow Boys with a sing-along of London songs and a mini re-enactment of an air raid with siren, which brought memories flooding back to some. On Sunday the conference was entertained by a team of four mediums, with humour, bringing messages from loved ones and the return of a favourite comedian who entertained us in 2010 – Paul James.

COMPETITIONS
Some 19 delightful Fibro Ducks were entered for the Best Dressed FD competition with three winners – Debbie Wilson, Maggie Stewart, and Orla Desmond – all winning first place. I am guessing the surnames are right as no one gave their full name. Judges Pam Stewart, Nichola Bond and Simon Stuart found it hard to make a choice. The Fibro Pearly Queen, the first prizewinner, was Maggie Perry, fibromite, who runs a Bed and Breakfast business in Kenilworth in the Midlands. Running a close second were the Pearly Prince and Princess, Ahmed Benallegue and Orla Desmond from Reading, who had also spent hours stitching on Pearlie buttons, to the delight of Cockney Jim, the Pearly King of Camberwell and Bermondsey.

PROGRAMME
Due to the unexpected late cancellation of the American doctors it was difficult to find replacement keynote USA speakers. But UK Dr Kim Lawson, international researcher, from Sheffield University, was among the favourite speakers with two presentations. Dr Nick Avery (CAM) returned and was well received again. Following her success in 2010 Dr Nina Bailey returned and after her presentation spent the day talking to fibromites about their problems. Dr Mark Cropley from Surrey University, a sleep specialist, also visited conference to network, to meet delegates and hear the speakers.

Dr Ian Rubenstein, a GP, had some humourous stories to tell and brought light hearted entertainment to the speakers’ room with his medical and mediumship re collections. Other speakers included Dr Thierry Conrozier, a French consultant rheumatologist; Dr Ruolin Sun, a Chinese herbalist and acupuncturist; nutritionist Joanna Majithia from the Institute of Optimum Nutrition; Mary Jane Burgess, a clinical hypnotherapist from Mind over Matter; Sue-Ellen Nicholls and Nicky Stoddart, pain management consultants; Andy Pothecary, a Special Rheumatology Pharmacist at the Royal Cornwall Hospital, Truro; Rebecca Richmond, creator and author of Forget Fibromyalgia; Steve Porter and Heather Gale who spoke about titanium technology and the new healing Black Wand; and Ken Murishwar from Midhurst who told his audience being healthier is simple, with just juice and 5 a day.

In the workshops mainly presented by fibromite, Suzie Oulton told her proto-col story from wheelchair to back to normal and offered tasters of her ’green magic’ which looked suspicious but was quite tasty; Jane Russell the dental hygienist who was a big hit in 2010 was back with more information and dental goody bags; Caroline Hinkes spoke about the Tried and Tested group, HeartMath practitioner and training; Kristina Richardson offered inspired coaching for getting back to work. Kit Stapely gave a talk and laughter workshop, and describing how laughter helped her recover from cancer. Marie-Caroline Scheid-Pickford described her very cold experience at -135o Celsius with cryotherapy (Kriotherapy) at Champneys.

Stella Bernardi, FMS SAS Co-Chair had prepared her work for the power point presentation on Computers for Beginners. But due to a fall she landed in hospital two days before conference and did not make it to conference. Our best wishes for a speedy recovery Stella. Instead Ray Brunton from the Worthing FM SG, an IBM computer buff, stepped in and ran the workshop. A big thanks Ray. With another last minute cancellation due to illness Nichola Bond GL from Worthing FM SG stepped in with ‘How to Start a Group’. Delia Mead with her Family History workshop in the coffee shop was a great success and was busy all morning with her magazines and ‘how to’ brochures.

The exercise workshops were provided by Roz Macarthur who did dance and tone and Pilates, while Chris Milton taught Tai Chi and Qigong mediation and breathing. Anna Moorby, visiting from London introduced the new Healthy Steps – a mixture of dance and exercise introduced as the Lebden system. Sunday saw tables and stands with pamper therapists, mind body and soul readers, art, handicraft and products.

FMA UK and FM SAS both had information stands available throughout the weekend and helped each other and many of the delegates. There was lots of talking to like minded folk, joy, laughter and delight at meeting friends from last year and as well as quite a bit of problem solving. Chairman of the FMA UK Trustees Pam Stewart and SAS Trustee and Worthing GL Nichola Bond and were answering FM questions all weekend – a great opportunity not often available.

THE FUTURE
I am under ‘family orders’ to stand back and give up the conference, but I have heard whispers that the conference is expected to go on possibly in April 2012, so watch this space. As South Downs, the present venue, is already fully booked for 2012, the conference would have to find a new venue. I am told a few folk are hoping to keep the conference going and make this happen again in 2012. Somehow I think I may be disobeying orders, as I cannot believe I will be able to stand back and not share a tip or two.

THANKS
Our thanks to everyone who worked so hard to make the event such a success. Special thanks to Glenda and Martin and their two ‘apprentice film makers’ Sophie and Aruna Murishwar who were volunteered by Dad to do some filming. Only two speakers did not wish to be filmed. What we have we will share with you once the film is available. But please be patient as this may take some time due to health, namely fibromyalgia. Meanwhile work is going ahead on finalising the DVDs from the 2010 conference with Prof. Choy and other key speakers. We are all still reeling from the 2011 conference and pressure of work but as soon as these are available we will let you know.

A sincere and very big thanks to the following folk in no particular order – Heather Butterick, GL Nene Valley who was OC in the speakers’ room and did a grand job of keeping everyone running on time with the help of her dear husband, Roger; Simon Stuart our techno wizard who looked after the equipment in the speakers’ room for the two days of presentations and the race night; thanks to the Wittering Freemasons – Bill, Brian, Stuart, Peter, and wives Pam and Pauline for organising the race night and tote and to Glenda and Martin who helped out on the tote. A big thanks to Lorely who picked and deliver back to the Station, speakers who came by train; Leanne Daniel GL Horndean who took copious notes of the presentations along with Denise Rhodes. Thanks to Jenny Oaks, Pauline (co GL Chichester), Glenna and Arthur who all did long stints on the front desk dealing with enquiries. A big thanks also to those who worked behind the scenes writing letters, Helen and Suzie and my gratitude must go to my family and to my dear friend, Sarah who fished me out of deep water, got me back on dry line and working once again. Without this support we would not be recalling happy moments at the conference.

THE VENUE
Thanks also to all the staff at South Downs who did a grand job – kitchen dining room, entertainments and admin – I personally did not receive one complaint. My bed was comfortable, the food was good even though I was often late and the service was excellent -some said better than a 5 star hotel. From the response on Monday morning I think most of you enjoyed the weekend.

Thanks to everyone who came and supported the conference – without you there would have been no fun, laughter and help for each other. Thanks to those fibromites who gave presentations, did workshops, signed their books. To those who gave their time selflessly to make the event happen, my personal thanks. Also our gratitude to the entertainers, speakers, therapists and Tranquility, who all helped to make the weekend a big success.

FURTHER INFORMATION
The contact details of most folks who entertained were printed in the programme. If you need information and no longer have the programme a short email with FIBCON 2011 INFORMATION in the subject will bring whatever details I have, back to you. Email me at fibrowhat@me.com.

WHERE DID THE MONEY GO?
I wish I knew – the bills seemed to be higher this year – maybe it was petrol costs, rising prices or perhaps we just wanted more this time. Who knows, but our money did not buy as much as it did last year. Apart from Labrha, the French company manufacturing Fibromyalgine, who sponsored the conference bags, there was no other sponsorship. I made at least 12 grant applications all without success – I believe this may be because we are not yet a registered charity and the effects of the current cut backs in the voluntary sector. But we are working hard to get registered. Donations or fund raising for the Folly Pogs research fund are always very welcome.

As before we begged, borrowed and stole short term, to get the show on the road, supported by the Folly Pogs (FM Philanthropists Research Fund). We had a handsome donation from Cherry Cull of Horndean, also a very respectable donation from an anonymous local fibromite. The proceeds of the race night and the raffle will be added to the research fund. I am hoping all those folks and groups who raised money for the Americans’ non-visit will agree these funds should find their way to research to help find a cure. Thanks to Marie-Caroline for her help and support and the £313 sponsorship from her 100-mile walk she has now donated to research.

We will be talking to Dr Kim Lawson, one of our keynote speakers, about research and hope in the future to sponsor some research through him. We do need to raise some mega bucks before then. We already have around 8 would-be trustees willing to help when we become a registered charity – so we live in hopes. All donations gratefully received – we all want a cure – contact me at email address below- and thanks.

2012 CONFERENCE
I said in a weak moment I could not do it again – but guess what – the conference lives on. There will be another April conference and pamper weekend in West Sussex during Easter weekend – Friday to Monday supported by the Folly Pogs and FMS SAS. Details are yet to be arranged but we only have half the accommodation, so it will be first come first booked. To stake your claim write to jeannehambleton@me.com with FibCon 2012 in the subject please.

Meanwhile take care and look after yourselves. Fibro hugs Jeanne

“Walk in My Shoes™” for Fibromyalgia

From the FMS Global News Desk of Jeanne Hambleton (UK)

Courtesy Newswiretoday.com

NewswireToday – /newswire/ – Anaheim, CA, United States, 04/22/2009

For anyone who has ever felt helpless watching a loved one suffering from chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and chronic Lyme disease, “Walk in My Shoes™”.

Hosted by P.A.N.D.O.R.A. (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc.) a non-profit charitable organization founded in 2002 to create awareness and address the needs of persons in the U.S. diagnosed with the above mentioned illnesses, “Walk in My Shoes™” will be held on May 23 at the C.B. Smith Park in Pembroke Pines.

The fundraiser is P.A.N.D.O.R.A.’s first hosted walk, and aims to attract participants who will make the 5K walk on behalf of friends, co-workers and family members with chronic illnesses.

“Acknowledging and understanding the real pain of a loved one suffering with these chronic illnesses is one of the most important things that friends and family members can do to show their support,” said P.A.N.D.O.R.A. founder Marly Silverman, who was diagnosed with chronic fatigue syndrome (CFS) and fibromyalgia in 1998.

“’Walk in My Shoes™’ also recognizes the important role that caregivers play in the lives of those with these debilitating illnesses.”

“Healthy persons may never be able to truly understand the debilitating body wide pain and fatigue, brain fog/cognitive impairment and flu like symptoms experienced on a daily basis by people with CFS, fibromyalgia and other chronic pain illnesses, however, helping raise much needed funds to continue the work of advocacy groups like P.A.N.D.O.R.A. brings us another step closer to finding a cure,” Silverman added.

WALK REGISTRATION

Check-in for “Walk in My Shoes™” begins at 7:30 am to 8:30 am. The walk starts promptly at 9:00 am. The C.B. Smith Park is located at 900 N. Flamingo Road in Pembroke Pines.

About P.A.N.D.O.R.A., Inc.

Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy
P.A.N.D.O.R.A. (pandoranet.info) was founded on July 1, 2002 by Marly C. Silverman, a Chronic Fatigue Syndrome and fibromyalgia patient. Our mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and chronic Lyme disease and advocate on quality of life issues. P.A.N.D.O.R.A. is Built on Hope – Strong on Advocacy – Finding a Cure through Research.

Contact: Corin Walson – info[.]walsonpr.com – 714-970-2268
(http://www.newswiretoday.com/news/49839/)

Prescriptions for opioids jump following co-proxamol ban

From the FMS Global News Desk of Jeanne Hambleton

Courtesy PulseToday.co.uk.

By Lilian Anekwe – 17 March 2009

Opioid prescriptions have jumped during the withdrawal of co-proxamol, with GPs apparently struggling to find adequate means of pain control for some patients.

Prescriptions for morphine have risen by more than 40% and those for tramadol by two-thirds since co-proxamol use was first reduced in anticipation of the drug’s withdrawal.

An analysis for the Medicines and Healthcare Products Regulatory Agency, obtained by Pulse under the Freedom of Information Act, reveals prescriptions for co-proxamol plummeted from 835 million in 2004 – the year prior to legislation on its withdrawal – to 121 million in 2007.

But over the same period, opiod prescriptions overall rose by 40%. Prescriptions for morphine rose by 44%, from 757,000 in 2004 to 1,093,000 in 2007, and tramadol prescriptions increased by 61%, from 3,130,000 to 5,036,000.

Co-proxamol was removed from the British National Formulary on 1 January last year, but the NHS Information Centre analysis shows GPs continued to prescribe co-proxamol to approximately 150,000 patients in England on a named-patient basis.

The MHRA downplayed the impact of the withdrawal and said the ageing population was to blame for increasing demand for analgesics. But the agency’s pharmacovigilance group concluded: ‘Opioids, especially tramadol, have followed an increasing trend and some patients may have been switched to this class of analgesic.’

Dr Adam Bajkowski, a GP in Wigan and president of the primary care rheumatology society, said the analysis suggested the MHRA’s argument that full-strength paracetamol was as effective as co-proxamol was flawed: ‘If GPs are having to switch patients to a stronger opioid, then it suggests the MHRA’s reasoning wasn’t really true.’

READERS’ COMMENTS
MHRA | 20 Mar 09
Your report on analgesic prescribing following the withdrawal of co-proxamol presented a distorted picture of the relevant information.

The withdrawal of co-proxamol in the UK has saved approximately 300 lives per year and there is no evidence that the death rate due to other analgesics is increasing. Prior to the withdrawal of co-proxamol, the MHRA issued guidance on pain management from the former Committee on Safety of Medicines (now known as the Commission on Human Medicines) to help doctors find the best options for individual patients, setting out a graduated range of possible therapeutic interventions.

Opioid prescriptions have not “jumped” during the three-year phased withdrawal of co-proxamol, as suggested in the article, and we do not have evidence that patients are being switched from co-proxamol to other opioids. Even though opioid prescriptions have increased steadily over the last 5 years they still make up a very small proportion of the overall prescriptions for painkillers.

There were increases in the numbers of prescriptions of paracetamol and of co-codamol around the time of the co-proxamol withdrawal. These increases were sufficiently large to suggest that patients may have been switched from co-proxamol. A research project to look at the analgesics that patients have been switched to will be started shortly.

Pulse, CMP Medica. All rights reserved.
(http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4122142&c=2)

EDITOR’S NOTE As someone who suffers with pain 24/7 from fibromyalgia, I managed very nicely with co-proxamol and some pain killing gel for the aches and pains until the withdrawal on December 31 2007. We were promised that those who really could not manage without it would be prescribed on a named patient basis. The Government and the Ministers failed to mention the under handed action of making co-proxamol an ‘illegal’ drug.

After I fought my own personal battle to reverse the withdrawal and tried to become a named patient, all unsuccessfully, I tried the alternatives which aggravated the old IBS. So I am left with nothing but pain. My GP will not prescribe co-proxamol for fear of litigation and I do not want to fill my body with drugs where the side effects for me are unbearable.

Why was co-proxamol not listed as a controlled drug. Those in need could then have received the pain relief they need so badly.

I imagine with the increase in these alternative medications mentioned in the article above, the cost of pain treatments has soared against what was a relatively cheap pain killer – £2.79 for 100 tablets – before the Government got involved. Is it any wonder the NHS is always short of funds and this is just a small example of failure to see the whole picture.

Why did GPs stop prescribing co-proxamol read this article from Pulse just after the withdrawal on 17 January 2008.

PCTs threaten GPs over co-proxamol

By Nigel Praities – 17 Jan 2008

PCTs are piling pressure on GPs to switch patients from co-proxamol to alternative medication, after the reimbursement price of the drug soared with loss of its licence.

In December 2007, co-proxamol was listed as Category M medicine with a reimbursement price of £2.79 for 100 tablets. From January 2008 it has been available as an unlicensed drug, but has been changed to Category C with a reimbursement price of £20.36 for 100 tablets – a sevenfold increase in price.

The price hike has galvanised trusts into action, with several already having contacted GPs to urge them to prescribe alternative analgesics, just weeks into the new year.

West Essex, Islington and West Hertfordshire PCTs are all planning, or have already, written to GPs about the price increase.

Norfolk PCT is planning a series of meetings and individual visits to reinforce the status and cost of co-proxamol to GPs. Other PCTs have indicated to Pulse that they are monitoring the situation in their area before taking action.

Dr Iain Gilchrist, a GP in Essex and treasurer of the Primary Care Rheumatology Society, who has taken all his patients on co-proxamol off the drug, said the price increase would put even more pressure on those GPs still prescribing it.

‘No doubt with GPs who still have patients on co-proxamol, the prescribing advisors will be wanting to have a little word in their ear. There is nothing like a price hike to concentrate the mind,’ Dr Gilchrist said.

Dr Gilchrist received an email in early January from a prescribing adviser at West Essex PCT, which said the price of co-proxamol had ‘rocketed’ and is a ‘very expensive option, as well as being unlicensed.’

PCTs are worried about the cost implications as many practices have struggled to find alternatives for many of their patients on the drug. A Pulse investigation in December revealed as many as 60,000 patients may still be on co-proxamol and 60% of practices reported that a hard core of their patients continued to take it.

The latest pressure from PCTs adds to the medico-legal headache surrounding co-proxamol. Patients can still be prescribed the drug on a named-patient basis, although GPs assume legal liability if they continue to prescribe the unlicensed drug.

TROUBLED WITHDRAWAL OF CO-PROXAMOL

Jan 2005 – MHRA announces withdrawal of co-proxamol
Oct 2006 – A Pulse survey reveals 70% of GPs demand the MHRA review its decision
Jan 2007 – MPs demand u-turn on withdrawal at special House of Commons debate
Oct 2007 – 60,000 patients remain on co-proxamol
Dec 2007 – Final withdrawal of co-proxamol
Jan 2008 – PCTs panic as price of co-proxamol soars

(http://www.pulsetoday.co.uk/story.asp?storycode=4116799)

On 21 September 2006

One GP asked, “Is it time for a rethink on the co-proxamol ban?”

Co-proxamol is so accessible because it is the most useful analgesic in general practice and so a lot has been prescribed.

The academics who recommended banning it have made a kneejerk reaction without listening to those of us facing the realities at the coalface of medicine. All the alternatives, including paracetemol itself, are more toxic than co- proxamol. Tablet for tablet, they all have more paracetemol than co-proxamol. Dextropropoxyphene is not toxic to the liver. Paracetemol, co- codamol and co-dydramol are all readily available, more toxic and more expensive than co-proxamol, tramadol and so on.

Prescriptions will increase. More bleeds, more deaths and more drug interactions will occur. There will be more prescriptions for laxatives, more bowel obstructions, more hospitalisations. Drug costs will go up substantially and more successful suicides will occur.

I plead – think again. What do other GPs think?

(http://www.pulsetoday.co.uk/story.asp?storycode=4010484)

EDITOR’S NOTE: Just this week a member of my own family haas been hospitalised for 36 hours. The hospital doctors blamed the medication (pain killers) prescribed for broken bones. He was lucky to be diagnosed quickly or the complication might have been fatal. Afraid to take more medication he is living with unbearable pain. If he had been taking co-proxamol I doubt this would have happened. I literally ‘lived’ on co-proxamol for almost five months when I broke my wrist and my pelvic bone in three places – without any side effects.

So what do you think? Are you ready to press your MP to ask questions in the House to have co-proxamol licensed as a controlled drug?

Those Who Have Chronic Pain May Need to Assess Vitamin D Status

From the FMS news Desk of Jeanne Hambleton

Courtesy Newswire and Mayo Clinic (source)

Newswise — Mayo Clinic research shows a correlation between inadequate vitamin D levels and the amount of narcotic medication taken by patients who have chronic pain. This correlation is an important finding as researchers discover new ways to treat chronic pain. According to the Centers for Disease Control and Prevention, chronic pain is the leading cause of disability in the United States. These patients often end up taking narcotic-type pain medication such as morphine, fentanyl or oxycodone.

This study found that patients who required narcotic pain medication, and who also had inadequate levels of vitamin D, were taking much higher doses of pain medication — nearly twice as much — as those who had adequate levels. Similarly, these patients self-reported worse physical functioning and worse overall health perception. In addition, a correlation was noted between increasing body mass index (a measure of obesity) and decreasing levels of vitamin D. Study results were published in a recent edition of Pain Medicine.

“This is an important finding as we continue to investigate the causes of chronic pain,” says Michael Turner, M.D., a physical medicine and rehabilitation physician at Mayo Clinic and lead author of the study.

“Vitamin D is known to promote both bone and muscle strength. Conversely, deficiency is an under-recognized source of diffuse pain and impaired neuromuscular functioning. By recognizing it, physicians can significantly improve their patients’ pain, function and quality of life,” he said.

Researchers retrospectively studied 267 chronic pain patients admitted to the Mayo Comprehensive Pain Rehabilitation Center in Rochester from February to December 2006. Vitamin D levels at the time of admission were compared to other parameters such as the amount and duration of narcotic pain medication usage; self-reported levels of pain, emotional distress, physical functioning and health perception; and demographic information such as gender, age, diagnosis and body mass index.

Further research should document the effects of correcting deficient levels among these patients, researchers recommend.

This study has important implications for both chronic pain patients and physicians. “Though preliminary, these results suggest that patients who suffer from chronic, diffuse pain and are on narcotics should consider getting their vitamin D levels checked. Inadequate levels may play a role in creating or sustaining their pain,” says Dr. Turner.

“Physicians who care for patients with chronic, diffuse pain that seems musculoskeletal — and involves many areas of tenderness to palpation — should strongly consider checking a vitamin D level,” he says. “For example, many patients who have been labeled with fibromyalgia are, in fact, suffering from symptomatic vitamin D inadequacy. Vigilance is especially required when risk factors are present such as obesity, darker pigmented skin or limited exposure to sunlight.”

Assessment and treatment are relatively simple and inexpensive. Levels can be assessed by a simple blood test (25-hydroxyvitamin D [25(OH)D]). Under the guidance of a physician, an appropriate repletion regimen can then be devised. Because it is a natural substance and not a drug, vitamin D is readily available and inexpensive.

In addition to the benefits of strong muscles and bones, emerging research demonstrates that vitamin D plays important roles in the immune system, helps fight inflammation and helps fights certain types of cancer.

Other study authors from Mayo Clinic include W. Michael Hooten, M.D., Department of Anesthesiology; John Schmidt, Ph.D., Department of Anesthesiology Research; and Jennifer Kerkvliet, Cynthia O. Townsend, Ph.D., and Barbara Bruce, Ph.D., all from the Pain Rehabilitation Center.

Mayo Clinic is the first and largest integrated, not-for-profit group practice in the world. Doctors from every medical specialty work together to care for patients, joined by common systems and a philosophy of “the needs of the patient come first.”

More than 3,300 physicians, scientists and researchers and 46,000 allied health staff work at Mayo Clinic, which has sites in Rochester, Minn., Jacksonville, Fla., and Scottsdale/Phoenix, Ariz. Collectively, the three locations treat more than half a million people each year.

Chili Pepper Compound Can Bring Pain Relief

From the FMS News Desk of Jeanne Hambleton

COURTESY usnews.com Health Day – Monday March 16

Capsaicin works on nerves to ease joint discomfort, scientists say

(HealthDay News) – University of Buffalo scientists say they have found how capsaicin, the compound that gives chili peppers their fiery flavor, also works to relieve joint and muscle pain.

In a study appearing Tuesday in the journal PLoS Biology, researchers found that capsaicin flips on nerve-ending receptors that sense both pain and heat.

“The receptor acts like a gate to the neurons. When stimulated it opens, letting outside calcium enter the cells until the receptor shuts down, a process called desensitization,” study leader Feng Qin, an associate professor at the university’s School of Medicine and Biomedical Sciences, said in a news release issued by the institution.
The flood of calcium changes the levels at which the receptors detect pain signal. “In other words, the receptor had not desensitized per se, but its responsiveness range was shifted,” Qin said.

While capsaicin has been used in folk medicines for generations, knowing how it works in relation to PIP2 may lead to developing other analgesics that ease pain without first causing irritation on their own, the team said.

More information

The U.S. National Institute of Neurological Disorders and Stroke has more about capsaicin .
(http://health.usnews.com/articles/health/healthday/2009/02/25/chili-pepper-compound-can-bring-pain-relief.html)

Finding Effective Treatment for Your Chronic Pain

Studies are underway to look into the effectiveness of alternative ways of delivering pain medications

By January W. Payne

Chronic pain is a problem that—when healthcare, lost income, and lost productivity are taken into account—is estimated to cost about $100 billion in the United States each year. More than a quarter of Americans age 20 or older, or about 76.5 million people, say they’ve experienced pain that lasted longer than 24 hours, according to the American Pain Foundation—and 42 percent have endured pain lasting longer than a year. Nobody keeps good long-term national stats, but if North Carolina’s experience is any guide, the numbers are on the rise.

A just-published study in the Archives of Internal Medicine found that the prevalence of chronic low-back pain in the state more than doubled, to 10.2 percent, between 1992 and 2006. Paul J. Christo, assistant professor and director of the Multidisciplinary Pain Fellowship at the Johns Hopkins University School of Medicine, calls undiagnosed, untreated, or undertreated pain a “significant public-health problem.”

Chronic pain encompasses a multitude of ills, from back pain, headaches, neck pain, and conditions like arthritis and fibromyalgia to pain that develops as a result of cancer treatment and lingers for months or even years. Low-back pain, migraines, and joint pain (particularly in the knees) are among the most common complaints, according to the National Center for Health Statistics. knee pains,

Still, while it may have different origins, chronic pain “can be viewed as an illness in its own right because of its effect on function,” says Russell Portenoy, chairman of the department of pain medicine and palliative care at Beth Israel Medical Center in New York City.

Studies have shown that some people with chronic pain have brain abnormalities, though the connection between that and pain is not well understood. One recent study, for instance, showed that women with fibromyalgia had blood flow abnormalities in a region of the brain known to discriminate the intensity of pain that were not observed on CT scans done in healthy women.

Another study showed that chronic pain may harm the wiring of the brain, as demonstrated on functional MRIs. Chronic pain may also be caused by a problem with the “fight or flight” response, Christo says. “We believe that in certain pain conditions . . . the stress response can worsen pain because that stress response releases a chemical called noroepinephrine. . . . And noroepinephrine binds to certain receptors in the body that trigger pain.”

“Pain is essentially an alarm system that is designed to grab your attention, and when it works properly, it signals harm or healing,” says Scott Fishman, professor and chief of the division of pain medicine at the University of California-Davis School of Medicine. When the body heals, the pain should dissipate, but “the nervous system can become injured,” Fishman says. “That’s when the symptom of pain becomes the disease of chronic pain.”

Finding relief can take quite an effort, since the causes are often not immediately clear and there is not a sure-fire treatment. The battle can require a team of experts, so the multidisciplinary pain clinics or pain management programs that have sprouted up at hospitals, rehab centers, and in free-standing facilities over the past decade or so may be of particular help.

The clinics provide an all-in-one setting for care that, in addition to pain management specialists who may be trained as neurologists, psychiatrists, physiatrists, or anesthesiologists, may include physical therapists, family and vocational counselors, and massage therapists, for example. (The American Chronic Pain Association offers advice on selecting a pain clinic.)

After a full assessment, tailored treatment may include medications from anti-inflammatory drugs to antidepressants to opioids. Since commonly prescribed opioid medications such as oxycodone, fentanyl, and morphine can cause addiction, the American Pain Society and the American Academy of Pain Medicine have just released the first comprehensive clinical practice guidelines to help physicians make treatment decisions.

The guidelines, published in the Journal of Pain, suggest that physicians regularly assess people taking long-term opioids and do periodic drug screenings of patients who are considered to be at risk for abuse or addiction. Meanwhile, the Food and Drug Administration announced plans this month to require the brand-name and generic makers of morphine, oxycodone, fentanyl, and methadone to assist with a plan to reduce the risks associated with the drugs.

Other treatment options include injections of steroids or other medications, nerve blocks that interrupt pain signals, physical therapy, alternative therapies, and psychological interventions such as cognitive behavioral therapy, biofeedback, and guided imagery and other relaxation techniques. Acupuncture, which some people with pain find helpful, is thought to ease pain by raising the level of endorphins in the body, Christo says. “Endorphins are sort of like opioids. . . . They are natural pain relievers,” he says.

“They are released when the body experiences pain—when you sprain your ankle, cut your finger, in response to injury.” Still, research offers conflicting conclusions about the pain-relieving effects of acupuncture. A review of 13 studies published last month in British Medical Journal found that acupuncture offered only a small level of pain relief for people with low-back pain, migraines, knee osteoarthritis, and postoperative pain.

Jennifer Phillips, 41, of Providence Forge, Va., saw 54 doctors before the fibromyalgia that caused her pain was diagnosed in 1996. Finally, after seeing an internist whose nurse had fibromyalgia, she found a routine that works for her: a combination of proper sleep (achieved, in part, using the tricylic antidepressant amitriptyline), daily supplements of vitamins, magnesium, and potassium, plenty of water, and a low-carb diet.

The search is on for greater relief. Studies are underway to look into the safety and effectiveness of alternative ways of delivering pain medications, such as an inhaled form of fentanyl that would get the drug into the patient’s system more quickly. For older people who have fractures of the spine, vertebroplasty and kyphotlasty—two minimally invasive techniques in which bone cement is injected into the collapsed bone in the spine—can result in “significant pain reduction,”

Christo says. In the ongoing debate over how best to handle back pain, a study just published in the Journal of the American Academy of Orthopaedic Surgeons finds that the most effective way to treat most degenerative disc disease cases is to combine physical therapy and anti-inflammatory medications, rather than having surgery.
While it may seem counterintuitive, people with chronic pain should try to get exercise. Experts say it is important to keep moving, both for the usual cardiovascular reasons and in order to avoid muscle atrophy. A supervised, individually designed exercise program, incorporating stretching or strengthening, may improve pain and functioning in people with chronic low-back pain, according to a 2005 study published in Annals of Internal Medicine.

A physical therapist or personal trainer can offer the necessary advice. In fact, staying in bed for more than a day or two can make back pain worse, according to the National Library of Medicine’s MedlinePlus.

Jeff Nance of Indianapolis, whose chronic pain is caused by degenerative disc disease and spinal stenosis of his lower back, recalls that he barely wanted to leave his home three years ago. Then he discovered the Meridian Health Group pain clinic in Indianapolis. Now he is working full time again, and he recently participated in an annual bike ride across the state of Indiana. Nance goes back to the clinic every few months for a check of his medications, and he sees a psychologist a couple of times a month.

“What we try to do is really recognize that people can have pain for all kinds of reasons, [and we] find as many of those causes as possible and treat them in the most specific fashion as possible,” says Michael Clark, associate professor and director of the Chronic Pain Treatment Program in the Department of Psychiatry and Behavioral Sciences at Johns Hopkins Hospital. “Ultimately, you’d like to get somebody well.”

(http://health.usnews.com/articles/health/pain/2009/02/10//finding-effective-treatment-for-your-chronic-pain.html?loomia_ow=t0:a41:g2:r2:c0.160667:b22273524&s_cid=loomia:chili-pepper-compound)

Copyright © 2009 U.S.News & World Report LP All rights reserved.

Growth hormone as concomitant treatment in severe fibromyalgia associated with low IGF-1 serum levels. A pilot study.

Cuatrecasas G, Riudavets C, Guell MA, Nadal A.

ABSTRACT: BACKGROUND: There is evidence of functional growth hormone (GH) deficiency, expressed by means of low insulin-like growth factor 1 (IGF-1) serum levels, in a subset of fibromyalgia patients. The efficacy of GH versus placebo has been previously suggested in this population. We investigated the efficacy and safety of low dose GH as an adjunct to standard therapy in the treatment of severe, prolonged and well-treated fibromyalgia patients with low IGF-1 levels.

METHODS: Twenty-four patients were enrolled in a randomized, open-label, best available care-controlled study. Patients were randomly assigned to receive either 0.0125 mg/kg/d of GH subcutaneously (titrated depending on IGF-1) added to standard therapy or standard therapy alone during one year. The number of tender points, the Fibromyalgia Impact Questionnaire (FIQ) and the EuroQol 5D (EQ-5D), including a Quality of Life visual analogic scale (EQ-VAS) were assessed at different time-points.

RESULTS: At the end of the study, the GH group showed a 60% reduction in the mean number of tender points (pairs) compared to the control group (p<0.05; 3.25+/-0.8 vs. 8.25+/-0.9). Similar improvements were observed in FIQ score (p<0.05) and EQ-VAS scale (p<0.001). There was a prompt response to GH administration, with most patients showing improvement within the first months in most of the outcomes. The concomitant administration of GH and standard therapy was well tolerated, and no patients discontinued the study due to adverse events.

CONCLUSIONS: The present findings indicate the advantage of adding a daily GH dose to the standard therapy in a subset of severe fibromyalgia patients with low IGF-1 serum levels. Trial Registration: NCT00497562 (ClinicalTrials.gov).

PMID: 18053120 [PubMed - as supplied by publisher]

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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.

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]

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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]

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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.

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