16 Barberry Avenue, Chatham Kent ME5 9TE

Telephone: 01634 865925 E-mail: fibromedway@yahoo.co.ukWebsite: www.fibrosupportmedway.btck.co.uk

April 2011 ISSUE 52

Next Meeting: Thursday 26th May, at St Stephen’s Church Hall, Maidstone Road, Chatham ME4 6JE. 1.00pm to 3.00pm

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MEETING DATES FOR 2011

Thursday 26th May – Disability Benefits Centre (to be confirmed)Thursday 28th JulyThursday 22nd September – Wanda Wright - HomeopathThursday 24th November

All at the above address and time.

MARCH MEETING

The March meeting was well attended, not surprisingly since the subject of the talk was Irritable Bowel Syndrome which affects a large number of those with Fibromyalgia.

Dr Nick Read, a Medical Adviser with the Gut Trust, was an excellent speaker. Not only was it informative, helpful and comprehensive, but Nick gave his talk in a very easy to understand way, and there was also a lot of humour, much appreciated by those present.I would not be able to do justice to his talk by writing a report but will endeavour to put some information on the subject in the next newsletter.

FUNDING SUCCESSES

The Medway Lions Club have awarded this group £200 towards the costs of photocopying Information Packs. Our thanks go to them for this award.

We are also very pleased to announce that Cllrs. Trevor Clarke & Sylvia Griffin have awarded us £100 from their Ward Improvement Fund. They have been extremely helpful and have taken an interest in this support group during their time in office. Our grateful thanks go to them for their support and the award of this funding.

TELEPHONE ENQUIRIES

Please note that telephone calls to the group should be made on weekdays between 10am and 5pm. For those who are at work and unable to make telephone calls during those times, it would be appreciated if calls could be made during weekday evenings before 7.00pm.

SUPPORTERS’ HELPLINE

Ron Robson is available on 01634 865925 to take calls from supporters of those with Fibromyalgia, who just need to talk about their concerns.

FUNDING UPDATE

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NEWSLETTER

RENEWAL OF MEMBERSHIPDon’t forget to renew your membership if you haven’t already done so.

The balance in our Bank Account at the end of January 2011, was £3308.34.

Expenditure since then has been, £102.50 for DVDs, £26.96 for Stationery, £5.76 for Sundries, £722 for postage, £16.79 for Library, £106.55 for Special Events, and £133.47 for Photocopying.

This leaves a total of £2194.31.

At the March meeting and during the past two months, we raised, £65 on the raffle, £6.30 for books, £32 for pens, £15 for refreshments, £451 in donations, £102 for sale of 024 Fibromyalgia, £5.50 for plugmates, £4 for CDs, £306 for DVDs, £5 for Notepads, £5 for Car Stickers, £200 from Medway Lions Club, and £100 from Cllrs. Trevor Clarke & Sylvia Griffin’s Ward Improvement Fund..

This gives a total of £1296.80 to be deposited in our bank account.

This gives us total of funds of £3491.11.

DONATIONS

I would like to acknowledge all donations sent in during the last two months. All donations help ensure the service remains at the present level. I am not able to respond to each one personally but please accept our thanks to you all. Thanks also for the lovely letters I receive. They are much appreciated

SALES OF THE CONFERENCE DVD

The sales of the DVD of the talks by Professor Choy (Recent Advances in the Treatment of Fibromyalgia) and Margaret Robson (Fibromyalgia - The Patient’s Perspective), at the Conference for Drs and Healthcare Professional in October, at the Ashford International Hotel, have gone much better than anticipated. The first 100 were sold within a couple of weeks, and another 50 were ordered. These are also selling well. We have had a lot of positive feedback on this. Should you wish to purchase a copy,

please send your name and address, together with a cheque for £4 (includes £1 postage), to the address on the front of this newsletter. Cheques should be made payable to Fibromyalgia Support Group (Medway)

FUNDRAISING ITEMS FOR SALE

Don’t forget that we have the following items for sale:

Car Window Stickers at £1 each; Plugmates at 50p each; Pens at £1 each; 024 Fibromyalgia at £12 each, and Notepads at £1 each

NEW CANTERBURY GROUP

In February and March, two meetings were run by us in Chartham, Canterbury with the intention of starting a support group in that area. At the first meeting we were surprised and pleased that Jemma offered to co-ordinate the future group – and this was even before the first meeting had started! Three other people offered to help Jemma on the Committee, so we are pleased to announce that the Group has now been formed.

The Canterbury Group is the seventh group that we have set up apart from the Medway one and it is good to see that all are going really well. This group will now mean that everyone in Kent with Fibromyalgia will have a support group to access.

NORTH KENT GROUPContact: Philomena (Phyl): 0844 887 2348or e-mail: fibromyalgia.nkent@yahoo.co.uk

MAIDSTONE GROUP MEETINGSContact: Heather Hammond: 0845 458 3762or heather.hammond@mypostoffice.co.uk

SITTINGBOURNE & SHEPPEY SUPPORT GROUP MEETINGS

Contact Maria: 0845 458 3780Email: sandsfibrosupport@googlemail.com

INTRODUCING A PROFOUND TECHNOLOGY THAT CHANGES

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LIVES OFTEN IN JUST A FEW MINUTES

 Hi, my name is Steve Porter of PainAngels, and one of the founder UK independent business partners of Amega Global from Singapore. Over the last 20 years or so, I have been involved in Health & Wellness related products that really do give people positive benefits and value to those who use them. Less then 9 months ago I received a call from a business friend from Canada that introduced me to this new technology, and the amazing and profound results that it was obtaining. The next few days was to change my thinking and my life in the world arena of Health & Wellness.

I proceed to talk and meet the corporate leader of Amega Global, the chairman flying into UK from Singapore, were its company headquarters are situated. After many hours of investigating, speaking with doctors, practitioners and other people already just starting to use this technology in Canada and the USA, it was plainly obvious to me, I needed to be involved and share this technology with people here in the UK and Europe and to help the open up this part of the globe. My first personal experience of the technology was when I received my Amwand, our lead product and healing tool, on the Friday, and on that Sunday was invited through a Therapist friend to attend the Fibromyalgia weekend on the south coast near Chichester. At this time I had limited knowledge of the full usage of the technology using the Amwand.

I was introduced to some of the people there that were in great pain, and started to administer the technology to them, and I must say got some tremendous results. One in particular stands out, a lady in a wheel chair who has not been able un-assisted for 15 years to stand on here own two feet, let alone walk. That day she not only stood, but took 22 steps for the first time. That was all I need to make it my mission to share this technology with as many as I can. Since this

time I have administered the technology to over 80 people an have had 100% varying levels of success. I truly and sincerely hope you will seriously take an open minded approach and have this technology demjava-scripted to you and experience it to see if it can help you.

 So what is the technology? It is Zero Point Energy Field that has been harness through 25 years of Quantum Physics Research by the company, and they have devloped a way to infuse it into many different products through a process call Amized Fusion Technology (AFT). The resonate of this energy field has the ability to bring the body and its cells back to source, balance and homeostasis.

To understand this fully I would suggest going to a website to review the information that explains.  www.painangels.com  When your cells are back in balance and homeostasis' you are free from disease and pain, and your 70 trillion cells can then produce new good cells in your body.

The AFT is infused into a range of different energies which can be reviewed on the web link given. Because we cannot see this energy with the naked eye, we do a number of different demonstrations with the technology and products that will prove that this energy is there.  The Technology will increase your strength and flexibility, protect you against EMF, like phones, radiation, microwaves and smog pollutions that surrounds us all. The actual energy increase physically can be amazing when you apply this technology.  Our range of product cover the whole spectrum of Health & Wellness, from healing and protection, Nutrition and Water, Air and Environment, Anti-Aging and Skin Protection, Sleep and Personal Care, with many more in the pipeline.    This is now creating a Paradigm shift around the planet within the global health & wellness sector, to the degree that in the USA and

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Canada in the last 12 months when it was first introduced, top professional people in Health and Wellness related occupations are now harnessing this technology in there everyday practises.

We are now seeing similar things starting happening now in UK and Europe who are now facilitating the use of the technology. If you are interested in having a FREE INTRODUCTORY DEMONSTRATION of the technology, and see if it can work for you please contact us on 0800 316 1372, or e-mail painangels@gmail.com and ask for Steve. I will also do group sessions for people if required. Steve Porter PainAngels

Editor’s Note: This article does not constitute a recommendation by the Fibromyalgia Support Group (Medway). Any new treatments should be discussed with your Dr.

PATIENT ADVICE AND LIAISON SERVICE (PALS)

PALS is a friendly and professional NHS service offering support, advice and guidance about medical and health related issues for the population of Medway.

As a patient, relative or carer sometimes you may need to turn to someone for help, advice and support. PALS are here to help you find your way through the NHS.

What can I expect from PALS?We will listen and take your concerns, suggestions and experiences seriously and ensure that people who design and manage services are aware of the issues you raise. 

In identifying problems or gaps in services and reporting them, it helps to change and improve services in the futureWe aim to resolve queries, concerns and issues quickly, at a local level and to find the right person who can help you and direct you to appropriate services.

All communication is confidential and will not be disclosed to another party without your permission.

How do I contact PALS?PALS can be contacted Monday-Friday between 10am and 4pm. Our PALS Officer is Bobbie Walkem-Smith and her contact details are below: 

PALS OfficerNHS MedwayFifty Pembroke CourtChatham MaritimeChatham Kent ME4 4EL

Email: pals@medwaypct.nhs.uk Telephone: 0800 014 1641 

(Please note this a freephone number. Should you receive the answering message, please leave your name and telephone number and we will call you back).

Editor’s Note: Both Steve and Bobbie came to speak at our January meeting. Both were very interesting and informative.

A 10-YEAR, LONGITUDINAL ASSESSMENT OF DOPAMINE

AGONISTS AND METHADONE IN THE TREATMENT OF RESTLESS LEGS

SYNDROME – SOURCE: SLEEP MEDICINE, JAN 14, 2011

BY N SILVER, ET AL.

Background: Restless legs syndrome (RLS) is a chronic disease, which is managed with palliative medications that are likely to be required for a patient's lifetime. It is, therefore, important to know the long-term consequences of these treatments.

Currently, the most commonly prescribed treatment for RLS is one of the dopamine (DA) agonists. Most of what we understand about efficacy and side effects of the DA agonists are, however, derived from relatively short-term studies.

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This is particularly a problem since these medications produce in some patients a significant increase or augmentation of RLS symptoms known to occur during the first 2 years of treatment and perhaps even later in treatment.

The primary aim of this study was to determine the long-term efficacy (10-year) for commonly used RLS medication types: dopaminergic agonists and opioids.

Methods: Records of all RLS patients treated in one tertiary care center with:

• Pramipexole [aka Mirapex and other brand names, a “non-ergoline-based” dopamine agonist also used for early Parkinson’s and experimentally for cluster headache, depression, and fibromyalgia], • Pergolide [aka Permax and other brand names, an ergoline-based dopamine agonist also used in some countries to treat Parkinson’s and by veterinarians for some conditions in animals; withdrawn from the US market in 2007]• Or methadone [aka Symoron and scores of other brand names, a synthetic opioid also used as an anti-addictive for patients on opioids, for pain, and as a cough suppressant]

…. during the years 1997-2007 were reviewed.

The duration and reason for any discontinuation of treatment and medication doses were recorded.

Results:Annual rates for discontinuing treatment persisted for up to 10 years of treatment and were fairly constant after the first year at:

• 9% for pramipexole,• 8% for pergolide,• And 0% for methadone.

Similarly, annual augmentation [symptom worsening] rates were fairly constant after the first year and persisted for up to 10 years at:

• 7% for pramipexole, • 5% for pergolide, • And 0% for methadone.

The percentage continuing on the treatment medication for over 5 years was 58% for pramipexole and 35% for pergolide.

Conclusions:

The DA agonists appear to have a limited period of clinical utility for many patients.

Severe augmentation, while not common in any 1 year, can develop even after years on the medication.

Methadone, in contrast, shows neither augmentation nor major problems with continued efficacy after the first year of treatment.

[Note: Another type of drug – gabapentin, aka Neurontin - may improve RLS symptoms according to a recent 52-week trial, but long term results are not known. Gapapentin is an anticonvulsive GABA analog drug used to treat post-shingles nerve pain and depression.]

Source: Sleep Medicine, Jan 14, 2011. PMID: 21239226, by Silver N, Allen RP, Senerth J, Earley CJ. Johns Hopkins University, Dept. of Psychology and Brain Sciences, 3400 N Charles St., Baltimore, Maryland, USA.

YOGA CLASSES

Bridget Reader is now running Yoga classes for people with ME/CFS in theRochester area.

"In these classes we will be using gentle yoga movements combined with breath work in a way specifically adapted for people with ME. Although the classes are aimed initially at those with ME, people with other disorderswhere chronic fatigue is a major part, such as Fibromyalgia, may also benefit. Mats will be provided, although you may wish to bring a blanket with you. Please wear comfortable

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clothing"

For details phone: 01634 843663 or email:bridget@VitalityTherapies.com

UPDATE OF WORK CAPABILITY ASSESSMENTS INFORMATION

FEBRUARY 2011

The Government has been running a trial of Work Capability Assessments in both Burnley and Aberdeen. Burnley was chosen because of the 6,300 plus claimants of long term sick benefits in a population of 70,000. Aberdeen was chosen for similar reasons. There is also a high level of claimants in Aberdeen.

During the week starting 14th February it emerged that nearly three quarters of the 1,347 cases assessed in Burnley and the other trial site Aberdeen, were judged fit to work or ‘work related activity’. A much higher proportion than originally expected. The 399 judged fit for work immediately will be moved on to the lower job seeker’s allowance at once and be subject to the penalties announced by the coalition in November for those who failed to take up work. Another 526 judged ‘fit for work with support’ will lose their enhanced allowance within a year.

For those in the first group who have appealed there is at least a six month wait before they can get to a tribunal. In the meantime their allowances have been cut by a third.

In Burnley the Citizen’s Advice Bureau (CAB) has been assisting many of the claimants. Even before the trial started, Burnley’s CAB was inundated with new claimants for what was formerly known as Incapacity Benefit and had been required to take the assessments. But those deemed fit for work who secured advocacy through the CAB were, at appeal hearings, able to get four out of five of the decisions overturned.

As more and more people are being called in for assessment it seems the number of appeals will increase.

Meanwhile the Burnley CAB has suffered a drastic cut-back in funding and is having to move some of their clients to Blackburn. This means that the delays for appeals will continue to mount and the time delays before the appeal is heard will continue to get longer. Whilst the government is quick to point out that any tribunal decision is back paid to the date it was stopped, this does not help the people appealing in the interim period.

The change to the assessment system was intended to weed out benefits cheats but it seems that those targeted are mostly those who do have long-term conditions. Of course one of the problems with assessing people to be fit for work is that there are very limited job opportunities in the trial areas.

Once again ATOS origin, who as readers of this newsletter will be aware, have not always been helpful to claimants, are being even less helpful than their usual selves when examining people for the new criteria. It has been reported that the people carrying out the examinations, in some cases, are not Doctors but other medical professionals, including nurses, and this has led to a fall in the credibility of the reports. It appears that inaccuracies in the reports, and reports that relate to someone other than the claimant examined, are becoming more common place.

The government has been criticised for its decision to extend the ‘fast track benefits test’ as a result of what has occurred in the trial areas. The number of people winning appeals makes it clear that the system is dysfunctional. This dysfunctional system is disenfranchising individual from their rights and can only cause severe hardship to those involved.

It appears that, from information gleaned in the Trial areas, every person called back for a review of any type of benefit should lodge an appeal.

Once again this newsletter draws people attention to the following website, www.benefitsandwork.co.uk where, for a

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small fee, people can sign up to information that could assist in the review and the appeal process.

This article has been compiled from information received by the Fibromyalgia Support Group and does not necessarily reflect the views of the group. Fibromyalgia Support Group (Medway) does not endorse any website mentioned in any article but merely offers the above for information purposes only. Information given in this newsletter should not be construed as advice.

MEDWAY MOBILITY SHOP OPEN DAY

On behalf of the Support Group, Ron and I went along to the Medway Mobility Shop Open Day on 14th February.

We had a very interesting morning there. Representatives from two disability distributors gave short talks, and we had a demonstration of putting together a mobility scooter. We also were given a demonstration of how a bath lift works.

Medway Mobility (almost opposite Iceland in Chatham High Street) has very friendly and helpful staff. The manager is very familiar with Fibromyalgia, as she has it herself, and is extremely understanding of our needs. Nothing is too much trouble for them.

BECOME AN M.E. & FIBROMYALGIA BLOGGER

NHS Choices are looking for people living with, and carers of, those with ME and Fibromyalgia to tell their stories in their blog. So if you want to talk about your difficulties and triumphs, complete the form on-line and they'll set you up. Check it out on their website at:http://talk.nhs.uk/blogs/fibromyalgia/default.aspx

FIBROMYALGIA AND IRRITABLE BOWEL SYNDROME STUDY

A joint study seeks eligible candidates to participate on on-line survey

FULLERTON, CALIFORNIA -- (February, 2011)-- The National Fibromyalgia Association and California State University, Fullerton would like to invite you to participate in an online survey regarding Fibromyalgia and Irritable Bowel Syndrome.

Please note, to participate in this study you must be:

at least 18 years old,

have been diagnosed by a health professional with both Fibromyalgia and Irritable Bowel Syndrome,

and not be pregnant.

For more information please go the following web page to access this survey.

http://surveymonkey.com/s/FMandIBS

Thank you in advance for your interest and support of this study,

Sincerely,

Courtney Taulbee, B. S, M.P.H (c), California State University, Fullerton (P) 657-278-7031. courtney159@csu.fullerton.edu

Jessie Jones, PhD, Professor in Health Science, and Director of the Fibromyalgia Research and Education Center at California State University, Fullerton (P) 657-278-7031. jjones@fullerton.edu

Rae Marie Gleason National Fibromyalgia Association rgleason@fmaware.org

IMPROVED BLOOD TESTS IN MEDWAY

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People needing blood tests in Medway can from 1 March benefit from a much more convenient service.

From 1 March, patients are able to go to any of 29 clinics, including 22 GP surgeries and branch surgeries across the Towns, to have their blood samples taken for testing. A further 11 surgeries and branch surgeries can take blood samples for their own patients.

This is a radical opening up of the service. Previously, around 20 GP practices offered a blood taking service for their own patients but none routinely offered the service to patients registered with other practices. The majority of people in Medway attended clinics run by Medway NHS Foundation Trust or Medway Community Healthcare.

The change is being made at the request of patients. When NHS Medway asked people needing regular blood tests where they would like them to be provided, as part of its drive to improve local health services, the overwhelming majority favoured GP practices. They said it would improve convenience and cut down on travelling times.

"Thousands of people in Medway need blood tests regularly, perhaps to monitor their cholesterol, or their response to medication such as Warfarin," said NHS Medway project manager Tracy Bishop.

"Others may need a one-off blood test, to assist in making a diagnosis.

"We asked patients what they felt would improve the existing service and they said more clinics and shorter waiting times. Waiting can be particularly difficult for patients who have to avoid eating or drinking overnight before a blood sample is taken.

"Patients asked for blood taking services to be provided at GP practices, and we are delighted that more than a third of GP practices in Medway are offering this new service, with some practices offering it in more than one location.

"This will ensure much wider choice for people."

The service provided by Medway NHS Foundation Trust at Medway Maritime Hospital will continue. However, its satellite clinics at Rochester Healthy Living Centre in Delce Road, and Keystone Centre in Strood are ceasing.

Some locations offer a drop-in service, while others are by appointment only. Full details are available on the NHS Medway website at:

www.medwaypct.nhs.uk/A-Z

The surgeries offering a blood-taking service to patients from any practice in Medway are:

King George Road surgery, 52A King George Road, Walderslade College Health, Boots, the Pentagon Centre, ChathamSt Mary's Island Surgery, Edgeway, ChathamStonecross and West Drive Surgeries, 26 Street End Road, Chatham Stonecross and West Drive Surgeries, West Drive, ChathamChurchill Clinic, 94 Churchill Avenue, ChathamDulwich Medical Centre, adjoining Greenacres School, WaldersladeWoodlands Family Practice, Woodlands Road, GillinghamMedway NHS Healthcare Centre (provided by Dulwich Medical Centre) 547-553 Canterbury Street, Gillingham Dulwich Medical Centre, Twydall Clinic, Twydall Green, GillinghamMalling Health, Blue Suite, Rainham Healthy Living Centre, 103-107 High Street, RainhamMalling Health, Parkwood Health Centre, Long Catlis Road, RainhamCity Way Surgery, 67 City Way, RochesterBorstal Village Surgery, 25 Wouldham Road, BorstalHighcliffe Medical Practice, Hermitage Road, HighamCliffe Surgery (provided by Highcliffe Medical Practice), Millcroft Road, Cliffe

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Riverside Medical Practice, Ferry Road, HallingCourt View Surgery, 2A Darnley Road, StroodRiverside Medical Practice, 19A Wood Street, CuxtonParkside Surgery (provided by the Parks Medical Practice), Cliffe Woods, RochesterThe Parks Medical Practice, Miller Way, WainscottSt Mary's Medical Centre, Vicarage Road, Strood

The surgeries offering blood-taking services to their own practices are:

Hoo St Werburgh Medical Practice, Yellow Zone, Balmoral Gardens Community Healthy Living CentreDr M Dharan, Dr AK Shetty, 90-92 Malvern Road, GillinghamDr PP Jana, 151 Napier Road, GillinghamBrompton Medical Centre, 28A Garden Street, BromptonDr M Faramawi, 1 Wyvill Close, RainhamThames Avenue Surgery, 2 Thames Avenue, RainhamDr DC Hubbard, Dr JH Redman 1 The Esplanade, RochesterKing’s Family Practice, 30-34 Magpie Hall Road, ChathamThe Halfway Surgery, 68 New Road, ChathamHoo St Werburgh Medical Practice, 98 Bells Lane, Hoo St WerburghThe Surgery (provided by Hoo St Werburgh Medical Practice), Mallard Way, Lower Stoke

Blood tests will also continue to be available at Medway Maritime Hospital - provided by Medway NHS Foundation Trust, Lordswood Healthy Living Centre, Sultan Road, Lordswood - provided by Medway Community Healthcare, The Sunlight Centre, Richmond Road, Gillingham - provided by Medway Community Healthcare, Twydall Clinic, Twydall Green, Gillingham - provided by Medway Community Healthcare, Rainham Healthy Living Centre - provided by Medway Community Healthcare, Parkwood Health Centre - provided by Medway Community Healthcare, Walter Brice Day Centre, Tilley

Close, Hoo - provided by Medway Community Healthcare.

TRIAL OF ALPHA STIM

Following a talk by Linda Horncastle about the Alpha Stim at our November meeting (you will have read the report of her talk in our February newsletter), and having a particularly bad time during January and February with very little sleep adding to the problems, we decided to make the trip to Linda’s Clinic in Buckinghamshire to have a trial of the Alpha Stim.

Although the journey took us only an hour and a half (well it was half-term!), I was still in some pain and discomfort by the time we arrived. I have known Linda for a number of years through the Fibromyalgia network so it was good to see her again. The idea of going to the Clinic was to have a two hour consultation on the use of the Alpha Stim (consultation cost £50). Linda gave an excellent explanation which was very interesting and we did learn a lot. For instance, one of the things we hadn’t realised was that the use of Alpha Stim does enhance medications, so you need to be aware of this when using the settings. As I had neck pain, Linda gave a demonstration using the Probes, and, even though I am the world’s worst (or is that best!) sceptic, I have to say that the pain disappeared. Bliss!!

If you buy the full set of the Alpha Stim it comprises Electrodes that you can place on your body to help with pain, Probes that you hold yourself, and ear clips. You can buy just the ear clips. Linda could tell that I wasn’t keen to use the electrodes. I had, for two years from 1998, used a TENS, and although Linda explained that the impulses were not as high as the TENS, I wasn’t keen to go down that road again. I should say at this point that the TENS helped me enormously when I used it, enabling me to keep working for an extra 2 years after my diagnosis. It was great for pain relief. It’s just all those wires to deal with, and the electrode pads caused irritation. Although that part is not for me, I can see the

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value of it for others and Linda uses it every day (she has Fibromyalgia herself). We decided to take home for a Trial, the Probes and ear clips (this costs £10 a week and it is suggested that you hire it for four weeks). I am not able to use the Probes on my back on my own so do have to rely on Ron being there to do it for me. Linda has devised a unique way of using the Probes herself which involves strapping one of the Probes to a child’s coat hanger. Very impressive, and it does work for her. For myself, I am not able to do that, as, even with the help of said coat hanger, the pain it causes me to do this is too extreme. However, once again, for those able to do this it is an advantage as, with Ron’s help with the application, it has helped a lot with pain relief and it does last for quite a long while. I am happy, though, to stick with the 024 Fibromyalgia that I can carry around with me and use when needed. I know the smell (camphor, menthol, eucalyptus, etc.) is not to everyone’s taste, but when you’re desperate ………….. So last, but definitely not least, the ear clips. Very easy to use. You can clip the Alpha Stim to your belt or waistband for the time of use. This can be 20 minutes or one hour, depending on the requirement for each person. It can be used once a day or as many times as you need it, but you must have finished the last treatment at least four hours before bedtime or you will have a sleepless night. This helps improve sleep quality, reduce stress and depression and gives mild pain relief. This sounded more like what I had come for. So, onto the four week trial.

Week 1As I said, I didn’t take the electrode option, but I did use the Probes (with Ron’s help) and when I did use it throughout the first week I did definitely get pain relief. The sceptic in me was being convinced!!

I used the ear clips for an hour, once each day, varying the times of day to see if there was any difference. I have to say that the first two nights I did sleep well. This was the main reason for trying out the Alpha Stim, and so that was great. However, the next two nights were back to normal with taking hours

and hours to get to sleep, having very little sleep, and waking early – too early and unrefreshed. The next night was much better, with the sixth night waking far too early and feeling very tired. I spoke to Linda at that stage and she explained that she didn’t really feel the benefit for two weeks, so I shall keep going. On the plus side was that, despite not having all good nights, I was feeling much calmer, had more energy, and my mind was a lot less foggy. I’ve mentioned the scepticism, so, at this stage I am still thinking it could just be the way it would have been anyway. However, I’ll enjoy the calm and relaxed feeling, make use of the energy and my less foggy mind.

Week 2Week 2 was not a very good time for a trial as while we were away on holiday, I put my back out when I lifted our two year old Granddaughter, and she slept in our bedroom for two nights waking up very early. I did try the Probes on my back but ended up resorting to 024 Fibromyalgia and a hot water bottle. I’m not sure about the ear clips, although I used them each day, as the searing back pain totally took over and sapped any energy I may have gained.

Week 3The pain from putting my back out continued through week 3 and the only respite was the good, old-fashioned hot water bottle. So, next stop, at the end of week 3, was the Osteopath that I have attended every couple of months for the past 20 years (she keeps me mobile). The Probes weren’t touching this pain, although still helping the neck pain.

Despite the incredible back pain, I slept well each night all through week three, still remained calmer with less anxiety, and that dreadful feeling when lying down in bed of becoming suddenly wide awake, seems to have been banished. That’s definitely a plus. I’m putting this down to the daily use of the ear clips. The sceptic in me is gradually being eroded. I don’t really care if others were to tell me it’s the placebo effect, I’ve not been like this with anything else I’ve tried, and, believe me, over the years, I’ve tried

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them all. Have a full cupboard to prove it!! I noticed on a review site of the Alpha Stim that someone had posted that they no longer lay awake with past thoughts running through their heads, of things they shouldn’t have done or wished they had done, and I have noticed this too. Another plus sign! So onto the final week, but I think my mind has been made up.

Week 4As I started on week four, I decided to order the Alpha Stim – just the ear clip version. This was £240, the price agreed with Linda when she spoke at our meeting. I think the convincing fact for me is that I am now sleeping much better. I don’t always wake up feeling refreshed, but I don’t expect miracles. However, not lying in bed at night awake hour after hour is a good feeling. Not only that, but it’s also the things I have mentioned in week three. As I said, I am the biggest sceptic, and I wasn’t convinced during weeks one and two, but I don’t want to rule out anything that I believe is helping me. See research below.

Margaret

Editor’s Note: Please note that this write up of the trial of Alpha Stim is of a personal experience, and does not constitute a recommendation by the Fibromyalgia Support Group (Medway). Any new treatments should be discussed with your Dr.

THE TREATMENT OF FIBROMYALGIA WITH CRANIAL

ELECTROTHERAPY STIMULATIONJ Clin Rheumatol. 2001 Apr;7(2):72-8;

discussion 78.Lichtbroun AS, Raicer MM, Smith RBRobert Wood Johnson Medical School,

East Brunswick, NJ 07719, USA.

AbstractIn cranial electrotherapy stimulation (CES), micro-current levels of electrical stimulation are passed across the head via electrodes clipped to the ear lobes. After successful clinical use of CES with Fibromyalgia patients in our clinic, it was decided to test

these results with a double-blind, placebo-controlled study in which 60 randomly assigned patients were given 3 weeks of 1-hour-daily CES treatments, sham CES treatments, or were held as wait-in-line controls for any placebo effect in the sham-treated patients. Treated patients showed a 28% improvement in tender point scores, and a 27% improvement in self-rated scores of general pain level. The number of subjects rating their quality of sleep as poor dropped from 60% at the beginning of the study to 5%. In addition, there were significant gains in the self-rated feelings of well-being and quality of life, plus gains in six stress-related psychological test measures. No placebo effect was found among the sham-treated controls. A theoretical role of CES in affecting the brain's pain message mechanisms and/or neurohormonal control systems is discussed. It is concluded that CES is as effective as the drug therapies in several trials, with no negative side effects, and deserves further consideration as an additional agent for the treatment of Fibromyalgia.PMID: 17039098 [PubMed - in process]

POSSIBLE INTEGRATION OF MEDWAY NHS FOUNDATION TRUST AND DARTFORD AND GRAVESHAM

NHS TRUST

InformationA range of collaborative working has been taking place between Medway NHS Foundation Trust and Dartford and Gravesham NHS Trust over the past year. This work has incorporated both clinical and non-clinical services.

The proposed changes to the NHS in the Health and Social Care Bill, as well as the increasing financial pressures, mean that they will be faced with some significant challenges over the coming years. In this context the Boards have not only been considering how to ensure longterm clinical and financial sustainability, but also how to improve the services offered to local people. After careful considerations, Medway NHS Foundation Trust and Dartford and

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Gravesham NHS Trust Boards have agreed to explore the feasibility of bringing the two trusts together as one organisation. The main priority for both trusts will continue to be the provision of safe, effective and specialist healthcare to local patients. Integration of the two trusts could:

reduce management costs, putting savings directly back into patient care

offer the broadest range of core services and treatments to the highest standards of care for the growing local populations

provide local patients with the specialist services they need, preventing the need for them to make long journeys to other hospitals; for example, to London

maximise the use of each hospital’s facilities and estate

share best practice to improve patient care and experience.

The entire process will be open to scrutiny. The trusts will consult with staff as well as with patients, the public, governors, members, GPs, commissioners and local authorities. Any decision will be subject to a thorough process requiring approval from the Department of Health and Monitor, the foundation trust regulator. It is anticipated that feasibility work will be complete within a time frame that would allow approval processes to be complete by April 2012.The trusts believe that integration could help protect those aspects of both hospitals which already represent the very best of the NHS, and has the potential to create an even stronger range of services fit for 21st century healthcare.

For more information contact Yasmin Khan, Head of Communications, Medway NHS Foundation Trust, Medway Maritime Hospital, Windmill Road, Gillingham, ME7 5NY, telephone 01634 833852, email yasmin.khan@medway.nhs.uk or visit the website: www.medway.nhs.uk

Taken from Medway LINk Bulletin Issue 31 March 2011

MOTABILITY NEWS

The Motability Scheme provides worry-free motoring to over 560,000 disabled people and their families who transfer their Higher Rate Mobility Component of the Disability Living Allowance to obtain a car, powered wheelchair or scooter of their choice. Motability can also award charitable grants to help pay for hoists to be fitted to cars in certain circumstances.

Motability have now produced a new DVD to explain the benefits of the Motability Scheme to both health professionals and disabled people and their families.

They have also launched a new and improved online Car Search tool. With it, customers can compare cars and prices with ease, save searches, view pictures and find more information on their complete range of over 4,000 cars. You can even create a shortlist of your favourite vehicles and email or print details to keep for future reference. This is at www.motability.co.uk Their recent Scheme improvements include:

Customers that have driven less than 15,000 miles within their three year lease can choose to keep their car for a further two years.

From Summer 2010, regardless of any insurance claims made for the car, all customers returning cars in good working order, with no major damage, will be eligible for a £250 Good Condition Bonus ‘thank you’ payment.

Motability have a range of material, some of which we have at our meetings, and these include:

Introduction to Motability with DVD In-depth Guide to Motability Your Guide to getting a Motability

Car Guide to Adaptations Your Guide to Getting a Motability

Scooter or Powered Wheelchair.Contact Motability at www.motability.co.uk or call 01279 635999 or 01279 632067 (Literature request line)

FIBROMYALGIA AND SLEEP

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Are you having trouble sleeping because you have fibromyalgia? Most people with the disease complain of trouble sleeping. No matter how long they sleep, it is rarely restful. Here's some information that can help you get a better night's sleep.

What Sleep Problems Are Common With Fibromyalgia?

Sleep problems with fibromyalgia include insomnia or difficulty falling asleep as well as frequent awakening in which you become awake enough to remember them the next day. An even more common problem is awakenings that you don't remember but that definitely interrupt your "deep" sleep. Also, other sleep disorders -- such as restless legs syndrome and sleep apnea -- may be associated with fibromyalgia.

People with fibromyalgia talk about waking up day after day feeling exhausted with no energy. Usually, they feel more tired in the morning, and many go back to sleep during the day to ease their fatigue. Also, it's common for people with fibromyalgia to have great difficulty concentrating during the day, a condition called "fibro fog."

Why Can't I Sleep at Night With Fibromyalgia?

Some researchers believe it's the constant pain of fibromyalgia that causes sleep interruptions. Others have found evidence that fibromyalgia may be related to an abnormality of deep sleep. Findings have shown abnormal brain waveforms in deep sleep with fibromyalgia patients. These patients tell of feeling "awake" or being in a shallow state of sleep throughout the night, instead of experiencing restful, deep- level sleep.

The problem with achieving only a shallow state of sleep is that, during deep-level sleep, your body repairs and replenishes itself. For example, studies show that people with fibromyalgia have a low level of a hormone

called somatostatin. Somatostatin is produced during deep sleep and is vital for maintaining

the health of muscle and other soft tissue. If the amount of deep sleep you get is reduced over a long period of time, your body may have less ability to "repair and replenish" energy as well.

What Stages of Sleep Are Important in Fibromyalgia?

People with fibromyalgia lack the deep, restorative level of sleep, called "non-rapid-eye-movement" (non-REM) sleep. Consequently, patients with fibromyalgia often wake in the morning without feeling fully rested. Some patients wake up with muscle aches or a sensation of muscle fatigue as if they had been "working out" all night.

Is Restless Legs Syndrome Related to Fibromyalgia?

Restless legs syndrome is a neurologic disorder characterized by an overwhelming urge to move the legs at rest. It's true that restless legs syndrome is more common among those who have fibromyalgia.

There is treatment for restless legs syndrome, so talk to your doctor if you have this problem. Treatment may even help your fibromyalgia symptoms.

Are There Sleep Strategies to Help People With Fibromyalgia?

Establishing better sleep hygiene is vital in managing the symptoms of fibromyalgia. Improving your sleep may help decrease your pain, fatigue, and "fibro fog." Try the following strategies and see if they help your sleep. In addition, ask your doctor about a sleeping pill that's safe and effective to get your body back on a restful sleep regimen.

Sleep only as much as needed to feel refreshed and healthy the following day, not more. Curtailing the time in bed seems to solidify sleep. Excessively long times in bed seem related to fragmented and shallow sleep.

Keep a sleep diary. Write down how you slept each night and triggers that may have interfered with your sleep. Reviewing your

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notes over several weeks may give you insight into your sleep problems.

Have a regular time to wake up each morning. A regular arousal time helps strengthen circadian cycling and leads to regular times of sleep onset.

Use relaxation therapies. A gentle massage, deep breathing, and other relaxation techniques are all generally considered beneficial to managing fibromyalgia and boosting restful sleep.

Exercise regularly (but avoid exercising three hours before bedtime). Exercise may exert its beneficial effect by promoting a deep level of sleep (non-REM sleep).

Sound-attenuated bedrooms may help those who must sleep close to noise. Occasional loud noises -- for example, aircraft flyovers -- disturb sleep even in people who are not awakened and cannot remember them in the morning.

Avoid daytime naps. Napping in the afternoon interferes with nighttime sleep.

Keep the temperature in your room cool. An excessively warm room disturbs sleep.

Hunger may disturb sleep; a light snack of carbohydrates may help sleep.

Avoid caffeine or alcohol in the evening. They both disturb sleep.

Can Medicine Help Me Sleep With Fibromyalgia?

The most effective medications in the treatment of fibromyalgia have been the tricyclic antidepressants, medications traditionally used in treating depression. In treating fibromyalgia, tricyclic antidepressants -- such as Elavil and Anafranil -- are taken at bedtime in doses that are a fraction of those used for treating depression. Tricyclic antidepressants appear to reduce fatigue, relieve muscle pain and spasm, and promote deep restorative sleep in patients with fibromyalgia. Scientists believe that tricyclics work by modulating nerve

transmitter chemicals in the brain, including serotonin.

WebMD Medical Reference

SOURCES:National Sleep Foundation: "Fibromyalgia."National Institute of Arthritis and Musculoskeletal and Skin Disorders: "Fibromyalgia."McIlwain, H. and Bruce, D. The Fibromyalgia Handbook, Holt, 2007.

Reviewed by Marc C. Levesque, MD, PhD on August 23, 2009© 2009 WebMD, LLC. All rights reserved.

http://www.webmd.com/fibromyalgia/guide/fibromayalgia-and-sleep

Reproduced by Kind Permission of WebMD

PERSONAL STORIES

It is good to see members sharing their personal stories, and I would like to encourage more of you to send in your own stories. It is always good for members to read about others and particularly if it is about a positive experience.

You never know when something you have felt, or tried, that has helped you, will help someone else. Don’t be discouraged if you have difficulty putting things into words, just give the bare bones and I will do the rest.

NEWSLETTER ITEMS

Items for inclusion in this newsletter are very welcome, but please note that the newsletter is about Fibromyalgia and related information, for those with Fibromyalgia, and their supporters. It would be helpful, if you are able, if you can send it via email.

The inclusion of articles and features in this newsletter does not necessarily infer endorsement by the group/Association. Any advice or recommendation of a medical nature, given in this

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newsletter, should always be discussed with a medical professional. The group/Association cannot be held responsible for omission and /or errors.

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