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

Back Pain – Medication and Addiction

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

Courtesy of WebMD.com

How can we balance the risk of drug abuse with the suffering caused by untreated back pain?

By R. Morgan Griffin – Reviewed by Brunilda Nazario, MD – WebMD Feature

People living with serious back pain have to sort through a lot of mixed messages about opioid — or narcotic — painkillers.

On the one hand, you have heard stories about the seeming epidemic of addiction to these drugs, like OxyContin, Percocet, and Vicodin. All those celebrities checking into rehab for painkiller addiction may give you the impression that the lure of these drugs is irresistible, that we are all just a few pills away from addiction.

But on the other hand, you might have heard that pain is chronically undertreated and many people are suffering needlessly. Which is true?

“They’re both true,” says Lynn Webster MD, medical director at the Lifetree Clinical Research and Pain Clinic in Salt Lake City. “In this country, we undertreat pain and we underutilize opioid painkillers. But we have also had a serious increase in the misuse and abuse of these drugs.”

This leaves many people with chronic back pain — and often their doctors — stuck in the middle. On the one hand, people are afraid of the risks of drug abuse and addiction that come with powerful painkillers. On the other, they are suffering from severe and debilitating pain and need some kind of help.

Opioid medicines can save lives. But they can destroy them too. What is an average person with severe back pain supposed to do?

Who Needs Opioid Painkillers?

Here is one piece of good news: most people with back pain do not need these powerful painkillers to begin with.

Many with back pain often just use non-addictive medications like Tylenol or nonsteroidal anti-inflammatory drugs (NSAIDs). Some NSAIDs are sold over the counter, like Motrin or Advil, and others are sold by prescription. Steroids can also be prescribed for back pain due to swelling and inflammation. These drugs do have some risks of their own, but the potential for addiction is not among them.

Even when powerful opioids like Percocet and Vicodin are necessary, many people only need them in the short term. After an acute back injury or surgery, many just use these drugs to ease the pain enough that they can start moving around and begin physical therapy.

But sometimes, the back pain lingers. Chronic back pain can sometimes develop as a result of arthritis or injuries that cannot be corrected surgically. In the small percentage of people with chronic and hard-to-treat back pain, a doctor may recommend long-term opioid therapy. Others may get opioid therapy if the side effects of other painkillers — like NSAIDs — are too risky.

While some patients and doctors swear by opioids as a treatment for severe chronic back pain, the evidence is not all that strong. One 2007 review in the Annals of Internal Medicine found that while opioids do help with short-term back pain, it is not clear that they help with chronic back pain. A 2007 Cochrane Review found that opioids may not work any better than an NSAID for chronic lower back pain.

How Big Is the Opioid Abuse Problem?

Prescription narcotic abuse is a serious issue, says Jim Zacny, PhD, a professor in the department of anesthesia and critical care at the University of Chicago. He points to the 2007 National Survey on Drug Use and Health. It found that as many as 5.2 million people reported using prescription opioids in the last month for non-medical reasons. That is more than double the number of people who used cocaine.

But many of the people illicitly using these drugs are not in pain. So the important question is this: how high is the risk of abuse for someone living with serious back pain?

There is some good news: the risks of actual addiction may be lower than assumed. “Among people with legitimate pain issues, it is a very small group who actually develop the disease of addiction,” says Webster.

Zacny agrees. “There is this myth out there that if you take an opiate, you automatically become enslaved to it,” he says. “That is not the truth at all.”

However, addiction is not the only issue. Webster observes that a much larger number of these people — perhaps 20%-30% — do wind up misusing or abusing the drug.

Opioid Addiction vs. Abuse

What is the distinction between drug addiction and drug abuse? Many people with real back pain are not addicted, but they begin to use their medication incorrectly. They might take too much, simply because the prescribed dose does not seem to be helping enough. Or they might use their medication to cope in other ways.

“People with pain sometimes take pain medicine inappropriately to feel a little high or improve their mood,” says Karen Miotto, MD, an addiction psychiatrist at the UCLA Neuropsychiatric Institute. “They might take one after a fight with a spouse or a hard day at work.”

Some people with chronic pain also have issues like anxiety and depression. They might start leaning on their pain medication to help them with these conditions too.

While we tend to focus on addiction, misuse and abuse can also be dangerous. Opioids are powerful drugs with real risks.

“In the last three to five years, we have seen a significant increase in the number of unintentional overdose deaths caused by prescription painkillers,” Webster tells WebMD. “At least half of them are in people who have legitimate pain problems with legitimate prescriptions.” Taking these drugs in ways your doctor did not intend simply is not safe.

“Our culture encourages the attitude that if one pill is good, two is better,” Webster says. “With opioids, that can be lethal.”

What Increases the Risk of Drug Addiction and Abuse?

The risks of drug addiction and abuse do not seem to be the same for everyone.

“It is not the pills alone that make an addiction,” Miotto says. She points out that addiction develops from a number of physiological, psychological, genetic, and social factors. A personal history of substance abuse also seems to increase the risk.

Mixing drugs also increases the risk of problems. “If you are taking your pain medicine along with other prescription drugs, you ratchet up the risk of addiction enormously,” says Miotto.

Webster says that pain itself is a risk factor: the greater the severity of the pain, the higher the risk of drug abuse and addiction. “After years of living with severe chronic pain, people will do anything to get rid of it,” he tells WebMD.

The Effects of Addiction and Abuse

Miotto says that drug addiction may seem to start innocently. A person might just occasionally call in a prescription early, or take a spouse’s medication as well as their own. “These behaviors can creep up on people slowly and then, all of a sudden, they have a physical dependency,” says Miotto.

The problem is that people who have a prescription drug addiction do not realize it. “Addiction is a disease of denial,” Miotto says. “It can take years before people realize what is happening to them.”

It pushes people to horrible extremes. Miotto knows one patient who eventually admitted that she pushed for surgery solely because she wanted the opioid painkillers she knew she would get afterward.

There is also another dimension to prescription drug abuse you should consider. Even if you do not abuse the opioid pills you have been prescribed, someone else could.

“A lot of the opioids that get used illicitly — especially by adolescents — come from the medicine cabinets of people who were prescribed the drug for legitimate pain,” says Webster. “People need to understand the potential harm that they can do to communities if these medications are not properly secured.”

Doctor vs. Patient

In part because of the stigma of prescription drug addiction, chronic back pain can sour even the best doctor-patient relationships. The patient can become frustrated by the doctor’s inability to cure his or her pain. Meanwhile, the doctor may become suspicious of someone who is always demanding refills of powerful opioids.

“Doctors are getting sued from both ends,” says Miotto. Some have been sued for providing opioid painkillers that lead to addiction; others get sued for not prescribing them to relieve debilitating pain.

People with a past history of addiction face the most skepticism from their doctors.

“I hate to say it, but when people walk in to the doctor and mention an addiction history, they may not be able to get these painkillers,” says Miotto. “The doctor may just not trust them.”

Alternatives to Opioids for Back Pain

Miotto says that some people with serious pain become too focused on opioids. They come to believe that opioids are the only thing that will help. But sometimes, you need to take a step back.

“If you keep increasing your dose of opioid pain medication but pain is still an 8 or 9 out of 10, it is time to shift gears and try something else,” says Miotto. She points out that at high doses, opioid painkillers can actually make your pain worse — a condition called opiate-induced hyperalgesia.

In addition to NSAIDs and other drug treatments, there are non-drug options for coping with chronic pain. Physical therapy can be invaluable. Miotto notes that treatments like massage, water therapy, and biofeedback can make a big difference with chronic pain. Unfortunately, it can be hard to get insurance to cover these sorts of treatments, Miotto says.

It is also important to treat any other conditions that might be exacerbating your pain. For instance, experts say that many people with chronic pain also struggle with depression and anxiety. “People who feel an increased amount of anxiety also feel an increased amount of pain,” says Webster. Even those who do not have diagnosed psychological condition can benefit from support groups or therapy.

Of course, some with chronic pain will bristle at that suggestion. They believe that it implies that the horrible pain they feel is “all in their heads.”

But Miotto says that is not the case at all.

“Severe, chronic pain makes life terribly difficult,” Miotto tells WebMD. “Therapy is just another helpful tool in getting people to cope better.”

Using Opioids Safely

Clearly, there is no simple advice when it comes to balancing the benefits and risks of opioids for back pain. But if you and your doctor decide to use these medicines, here are some tips for taking them safely.

Follow your doctor’s prescription precisely. Never double up a dose. Never take your medicine for any symptom besides pain.

Find a specialist. Dealing with chronic pain is complicated. Your regular doctor may not be comfortable handing out long-term prescriptions for opioids. So seek out a specialist in pain management or, better yet, a pain management center. This is essential for people who have a past history of substance abuse.

Do not mix opioids with other drugs. If you already use prescription or over-the counter drugs, supplements, or alternative medicines, make sure your doctor knows about every single one. Ask about the safety of using your opioid painkillers with alcohol.

Sign a pain agreement. These documents help build trust between a doctor and patient. A patient might promise to use the medication as instructed and, in some cases, agree to regular drug testing. In return, the doctor agrees to prescribe opioid pain relievers as part of the treatment plan.

Take a screener. Experts now recommend that doctors use screeners — a short series of questions — that help them identify people who might be at higher risk of opioid abuse. Like pain agreements, they help build trust between patients and doctors.

Ask about alternatives. Talk to your doctor about other ways you could reduce your back pain. Might non-opioid medicines help? What about surgery? Or non-traditional treatments like massage or relaxation?

Get support. Consider seeing a therapist or joining a support group for people with back pain.

Keep your medication in a safe place. Remember that it is not only the person in pain who is at risk of abusing opioids. So be careful. Do not keep your medicine where other people — your children, grandchildren, friends, or neighbors — can get to it.

Finally, the most important way to assure that you are using your medicine safely is to have a trusting and open relationship with your doctor.

“Anyone with chronic pain needs to find a physician who is compassionate and understanding,” says Webster. Trust between a doctor and patient is the basis of any good pain management.

(©2005-2009 WebMD, LLC. All rights reserved.

http://www.webmd.com/back-pain/features/back-pain-medication-addiction?ecd=wnl_cbp_052109&em=amVhbm5laGFtYmxldG9uQG1hYy5jb20=)

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