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UK Fibromyalgia Year 17 • Issue 11 • September 2017

Support for the FM FaMily

Supporting The Support Fibromyalgia Somerset & Invisible Me Wellbeing Phone number: 07815 606372 invisiblemewellbeingsupportgroup@gmail.com https://www.facebook.com/FibromyalgiaSomerset/

We meet every Monday from 12pm till 3pm Group actually starts at 12:30pm till 2:30pm. We use the extra time before and after to help settle in, have a chat and get yourself a refreshment. And after for any questions you may have and to close down the group.

Group Facilitators: Lizzy Oakley 07815 606372 Ellen Upham 07493 606234 Paul Hopkins 07590 230589

Weston-super-Mare Fibromyalgia Support Group

Phone number : 0795729307 Email : wsmfibro@gmail.com Website : wsmfibromyalgia.wordpress.com Meetings the second Monday of every month. Coffee the fourth Thursday of every month Theatre trips and outings

Page one - Supporting the support

Letchworth Fibromyalgia Group Started in Letchworth, Herts, at the MS Therapy Centre (behind Sainsbury’s) at the beginning of March, 2017. The group welcomes everyone that needs support - £2 per person, and refreshments also available.

Come and join us for an informal get together every Monday (except bank holidays) from 1-3pm.

Helpline: 0844 8872 616 for all further enquiries.

Biggleswade Fibro Friends - Beds biggleswadefibrofriends@gmail.com Meet every Thursday from 1-3pm in the Biggleswade town centre. The Wellness Centre, 6 High Street, Biggleswade. The group started up in March, 2017 - a new group, welcomes all from in and around Biggleswade. Come along for an informal chat and a cuppa - lovely venue with lots of healthy tasty options - £2 per person - refreshments are on sale too!

Helpline: 0844 8872 617 - for further information

The Fibronauts Club Netley Abbey, Southampton We meet every third Wednesday of the month, 2-4pm at The Grange Pub, Grange Road, Netley Abbey. Please email me or phone 023 80 455728 (you can also leave a message) if you would like to join. No membership fees. lindabooth921@gmail.com

Chesterfield Fibromyalgia Support Group Phone number: 07847 941248 chesterfieldfibro.group@gmail.com Andover Fibromyalgia & ME Community Group afmcguk@outlook.com afmcg.jimdo.com

South Manchester Fibromyalgia Support Group email - georginajameson@talktalk.net 0161 962 7396 - 10.30am - 8.00pm

Nene Valley Fibromyalgia Support Group 0844 8872456 fms.nene@gmail.com www.nenevalleyfms.co.uk Write: NVFSG 2 Appledore Close, Kingsthorpe Northampton NN2 8JG Meet Monthly between 2-4pm at St. Mark’s Church Hall, St. Mark’s Crescent, off Greenhills Road, Kingsthorpe, Northampton, NN2 8EG - normally 3rd Tuesday of each month apart from January

Aberdare Fibromyalgia Support Group Phone number: 01685 884410 Gailneal8@hotmail.co.uk We meet the last Wednesday of each month at Aberdare Rugby Club Aberdare, Rhondda Cynon Taff. Meetings start at 12.30 and end at 2.30 pm. We also meet on a Wednesday mid month at the same place and time for a social afternoon.

Meetings vary from discussions on specific topics, guest speakers, quizzes, craft sessions, up date on Fibromyalgia medicines, treatments etc. Carers are also welcomed.

Monthly fee is £2.50 which include refreshments. Yearly fee is £15, (£5 goes towards Christmas meal). Men and women welcome.

Ayrshire Fibromyalgia Self Help Group have recently merged with Fibro Friends United - Scotland (FFUScotland) and no longer exists as a lone Group

Doing your Bit for Fibromyalgia Awareness Contact your local support group to join in their activities Sponsoring- Do a sponsored silence, head shave, marathons, non-swearing day, bike or sporting event, abseiling, etc.

Sell arts and crafts Going without – chocolate, pizza, TV, video games, texting, talking on the phone. Smokers If you have a smoking area at work charge smokers a small fee to enter all week.

Car Boot & EBay-clear the clutter and raise money for fibromyalgia.

Donate your birthday/wedding/Christmas money, dinner (friends pay to attend), dog walking, dress down day at work, dog grooming.

Car wash • Mobile phone recycling • Odd jobs • Karaoke evening • Ask your boss to donate a small prize and hold a raffle • Cake sale • Jumble sale • Games night • Name the teddy • Get your local landlord to run a pub quiz and donate the entry fees to FM • Fashion Show • How many sweets in the jar • Organise a sponsored dog walk with friends in the park • Charity dance • Charity dinner or wine tasting • Hold a coffee morning at mother and toddler groups • Yoga in the park • Game stalls (pay to play, with prizes) • Children’s face painting

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

A BIG THANKYOU

for all your donations large and small

Mrs Carolyn Mapleson Mrs Sheila Lovibond Paula Stevens Mrs Cindy Martin Nichola Gannon Valeria Ruddock Stella Diggoary Christine Thomas Estelle McAllister Bianca Knight Ann Brock Sean Marriott Mrs Angela Martin Gwen Glover Mrs M Wyer Paul Wallet Penny Hitchings-Jones Mrs K L Burtonshaw Mrs P Skinner Ann Jefferyes Jean Austin Wendy Archer Gregory Moore Sue Holdsworth

Apply for FM Support Group funding The moneys that UK Fibromyalgia receive in donations is available to all UK Fibromyalgia support groups in the form of small grants. Our aim is to provide a transparent system where as many support groups as possible can quickly source small items that are essential to the running of their local support groups, such as printers, books, train tickets, speakers’ fees, PR materials, hall rental costs, photocopying, etc. All grants paid out will be publicised in Fibromyalgia magazine.

There is no minimum amount but the maximum is ÂŁ100.00. Funds are finite and the philosophy is to give a little, but often, so your bid is more likely to be successful if you apply for a small amount funding for indispensable items that will be key to the running of your group.

If your group has not received a grant yet then complete the form at: http://ukfibromyalgia.com/pages/support/grants.php The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Margaret Levett Janet Thomas Joyce Calling-Bradbury Mrs M E Davies Miss Shirley Johnson K S M Ladds Mrs R Collinge Mrs P Brown Miss Ellen Mirams Sharon Percival Mary Burwoods (Ayreshire Fibromyalgia Self Help Group)

Mari Carmen Abrahams Mrs Kathleen Ward Mrs Jivraj Cynthia Gittos Mrs Janice Tomlin

Page two - Supporting the support

Susie Connor Margaret Cradden Mrs G Jameson Francesca Keel Helen Elliott Tracey Cooper Mrs S M Stabler Sue Crew Linda Hunter Mrs Ann Sutcliffe Joanne Cox Prof Geoffrey Philpott Marjorie Calvert Mrs Keeling Mary M Loudon J A Davison Katie Roffe Mrs Patricia Aitchison Mrs P A Harrison Penny Hall Mrs Jane Haill Mrs Gail Hubbleday Sharon Caton Ms Christine Marks

How to set up and run a Fibromyalgia Support Group Part 4: Membership and Growth

Page three - How to set up and run a Fibromyalgia Support Group

By Julie Barker - Chairperson Fibro Active and Tracey Peel - Secretary In this article, we are looking at how and why we record data, from group membership, how we organise our membership and how to prepare for future growth. First, we will look at how important it is to have rules whether it be Facebook rules, covered in the previous article, group rules which will be covered in the next article or meeting rules.

Rules Just like our Facebook page we felt it was important to create a set of rules for the expected conduct at our weekly meeting. We decided members needed to agree on how meetings should be run because we were bringing together a diverse group of people, many of whom had been isolated and unsupported.

Some members needed to offload whilst others were less confident, they wanted to share but couldn’t find their voice in a group situation so we needed to ensure everyone got a say. We collaborated with members to come up with the following rules: Mutual Agreement Please aim to arrive promptly for guest speakers and activities.

The group aims to be welcoming, positive and inclusive.

Mobiles on silent please.

Confidentiality: What is said in the room stays in the room.

Agree to disagree.

Allow others their time to speak.

Try new things even if it scares us.

Dream big!

Membership Forms The group was originally set up with the support of Active Erewash who are part of the borough council.

As we initially set up, we came under the umbrella of their insurance and as part of that process they had group activity ‘consent’ forms they used for their youth groups which we adapted. The form gave us contact details but also details of next of kin to contact in case of emergency and consent for first aid treatment to be administered if necessary. We also asked permission to take photos or videos for promotional purposes. We need this consent because photographs are used in the public domain to promote the group. The photographs

are posted on Facebook, displayed on our awareness stand and used in the information leaflets we hand out at events and GP surgeries and are included as part of our report to funders.

Personal Profile Form New members are asked to complete a ‘personal profile’ form which we created that allows us to collect more detailed information about the key areas of health and well-being of our members. We created a database to store the information collected so we could use the data as part of the evidence for future funding bids. The key areas we asked about were: How does fibromyalgia affects you? How mobile members are, how much sitting or exercise they do, healthy eating and general diet, alcohol and smoking, hobbies and interests and a personal goal. The information collected not only helps us get to know members better but it helps us prioritise the help and support they need and we use this to create a bespoke programme. Our aim for the programme was to reduce the need for members to visit multiple services, they could access everything under one roof rather than travel great distances to get the help they need. We currently have over 215 members on Facebook, 74 of these have visited our weekly meetings and are full members, some of these have managed to return to work. We tell members, membership is for life and begins as soon as you fill in a consent and personal profile so even if they cannot attend for a month or so they know they are always welcomed back. Some members have been signposted by us to other services and have prioritised those services until they are able to return to us. We recognised from the beginning that due to the unpredictability of our illnesses that weekly attendance would vary. We have a regular hard-core group of 20+ members who attend weekly with a further 30 members who dip in and out when they are able.

Whilst writing the sixth monthly report to funders we realised that our ‘consent’ and ‘personal profile’ forms needed tweaking to give us more quantifiable data and make it easier to fill in reports and collect the evidence we needed for funding. We get all members to complete a review sheet every six months to check that we are continuing to meet the needs of our members.

Weekly register Our weekly register began with a simple spreadsheet where people added their name and phone number weekly. Unfortunately, due to fibro fog many members

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Data protection We ensure that members know we consider all information collected by Fibro Active as precious and it is treated in the strictest of confidence. Members individual information is never discussed at group or passed on to any outside agencies. The information collected is used to: help us determine the support members need in our weekly meetings, to track how effective our programme is, and to provide statistical data for future funding bids.

ICE (In case of Emergency) sheets The ICE sheets are used to collect important emergency information from members. We take them out with us on walks and activities and a nominated committee member keeps the documents secure. They contain information such as, next of kin, doctor’s details and any medication members are currently taking. They are updated regularly and they comply with data protection act.

Subscription fees Ideally, our aim was to have free membership as we knew that being a daytime group many of our members would be low income workers, retired or on benefits.

The room hire would be initially funded. However, whilst we were formalising the group Cats Paterson the Development Officer from Erewash CVS strongly advised us that future funders would be expecting us to begin the journey toward self-sustainability. From the inaugural meeting, we reluctantly began to charge members £1 a week. After a further meeting with funders in November we were strongly advised to increase the fees to £2 per week to show realistically that we could cover our rent.

We raised the fees in the New Year to £2 per week. This was met by a majority understanding and acceptance for the need to raise the fees. However, it did have a negative impact on one or two members.

I don’t know about you but I rarely have cash on me now days and finding £2 in the house on a Tuesday morning virtually impossible. After a member offered to donate a monthly sum to the group, we have made provision for members to pay by Direct Debit if they wish to make life easier.

as the folders were bulky and members never bought them to group. We have recently put in a funding bid for IT support to create a website. The website will include digital copies of hand outs and information including an online membership handbook. This will help reduce printing costs as the group grows and allow members who cannot come to weekly meetings to access the information. We have bought stud wallet folders for members who visit our weekly group sessions so they can store paper copies of handouts from group meetings if they wish.

It is best practice to have the basics in place and don’t be afraid to develop them as the need arises.

We hope you are finding these articles useful and we look forward to any feedback you may have. Have we inspired you into looking to start your own support group. Is there anything we can cover in future articles that may help you?

Looking back at the first article we looked at the initial set up process and who we worked in partnership with to gain the best support setting up. We then looked how the programme has developed in article 2 and the organisations who have come on board as programme partners. In the previous article we looked at how we used Facebook as a recruitment, membership and advertising tool, making it the centre hub of the group and in this article, in this article we have looked at membership and developing systems as we grow. Now we are ready to formalise the group. In the next article we will take you step by step through the inaugural meeting, committee and constitution.

Members Handbook As part of the membership package, we originally gave full members a folder with welcome details, symptom logs and information however we found this ineffective The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Page four - How to set up and run a Fibromyalgia Support Group

would add themselves several times making hard to track their attendance. As the group progressed we recognised a need for more accurate tracking so we gave them all a membership number and allocated them a place on the register this allowed us to lift the relevant information from the register onto our database. This has made it easier to track attendance trends and analyse the data to check that the programme isn’t having a negative effect on attendance and to find out what are the popular sessions

Page five - Letters

Hi there. I found your page information linked to the BBC website for ‘Doctor in the House’. I would just like to express my utter frustration at this recent episode talking about fibro. I was diagnosed just over a year ago and found it to be a really bad representation of how easy it is to “cure” fibro. I may be mistaken but I was under the impression it cannot be cured at all - let alone with a diet change and positive thinking!? I am part of a fibro support group and every member who watched is also hugely disappointed and upset by this programme.

We believe it has simply increased the stigma we have to suffer daily with the “it’s all in your head” just being backed up by this show. I was so hopeful that finally a programme was to be aired that would explain our condition and daily suffering, explain how we fight My name is Denada Xhafa; I’m 32 years old, from Tirana (Albania).

Although I have been suffering from fibromyalgia for a decade, more than six years ago my health deteriorated so much I had to leave my job. Then the consequences started: the quality of my life started decreasing and so did my social life. I have invested too much, both emotionally and financially in and out of private hospitals and clinics during these long years.

The Albanian State doesn’t give me any financial aid and it doesn’t reimburse the medications either. All my expenses have been covered in a sacrificial way by my parents who are retirees.

I have submitted requests to the Ministry of Health (Nr. of protocol Xh7, date: 19.05.2017) and the Prime Ministry (nr. of protocol:2047, date: 01.06.2017 ) about gaining financial aid and to reimburse the medications.

I have only received from them indifference and lack of solidarity for my disease. Often people say to me: ‘’This is not a disease; there is not a single line about fibromyalgia in the medical manuals!’’ Medics in Albania are little or maybe not at all informed about

daily battles with ourselves, explain our struggles with this unknown illness. All it did was make us look more crazy. I am so so upset and feel that as you have your name linked to it, maybe there is something that could be done to show the real face of fibromyalgia.

Sorry for the vent. I just want people to understand.

Kind regards Katie Constantin katiejc6@hotmail.com (In next month’s Magazine we shall feature an article from the lady that featured in the BBC ‘Doctor in the House’ programme, who has asked for a right to reply after receiving a lot of criticism on social media after the show aired.-ED) Fibromyalgia. I am sure that just like it has happened to me in the past, doctors might have told to other patients too: ‘You are not really sick, this is all in your mind’’. We feel totally unrepresented and destined to remain untreated like patients in the third world.

I addressed this complaint at an investigative television show ( 2/06/2017). http://m.oranews.tv/vendi/boom-denoncon-32vjecarja-prej-10-vitesh-vuan-nga-nje-semundje-erralle/ (My part begins from 06:15 to 19:15 minutes in the video).

I understand that you do not understand the Albania language. But I send you this link, to show how much I’m fighting alone. The medical institutions of my county have not supported me during these 10 years.

I apologize for my poor English!

Sincerely, Denada denixhafa85@gmail.com

I think the admin at The Facebook Private Group do an amazing job, I accidentally broke the rules once and an admin deleted my post and messaged me to explain why. I’d accidentally broken the rules so it was my own fault but we’re adults and it was spoken about then forgotten. It’s impossible to please everyone, I’m a member of lots of groups and I also manage a page with over 28k people on it, I’ve never seen such a well-run group!

It’s a hard job! Huge congrats to the admin and a heartfelt thank you, being part of this group has made me feel a lot less isolated than I have for quite a while.

Ann-Marie Robinson (Try it yourself at https://www.facebook.com/groups/UKFibromyalgiaPrivate/ -ED) The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Hi I was very interested to see the article on hypothyroidism. However, I was also very disappointed that there was no information about HASHIMOTO’S disease, the MOST COMMON form of hypothyroidism now affecting western countries.

I suffer from fibromyalgia, and also eventually discovered that I have Hashimoto’s disease. A friend of mine, who also suffers from FM, also found that she has hypothyroidism.

Her integrative doctor told her that he believes that everyone with FM also suffers from thyroid problems.

After decades of suffering thyroid symptoms, I finally figured out that I had a low thyroid problem. My doctor, however, kept testing and saying everything is normal. It was eventually 5 years before someone on the internet told me I needed to get the thyroid antibodies tests. Finally

I had a test that showed I had high peroxidase antibodies, indicative of Hashimoto’s disease.

I was very glad that the T3 medication was mentioned in the article. I found the usually prescribed T4 medication completely useless. I had no relief until I could obtain the T3 medication. I now take a mix of T4 and T3.

I wish I’d known all this a lot sooner.

I spent too many years feeling like a walking dead person, about to collapse on the ground with fatigue at any moment. The medications don’t fix every symptom, but they certainly make a difference to quality of life.

I would also like to mention some free talks now being shown on the internet, called ‘The Thyroid Secret’.

I have no affiliation with the people,

and have never purchased the talks. I simply listen to various free medical talks from this community, who refer to themselves as ‘functional medicine’. Although the series of ‘The Thyroid Secret’ talks is nearly ended, there will be an encore day, when most or all talks can be viewed for a day. The information provided is fantastic.

I hope you will consider more information on thyroid disease in future emails. I live in Sydney Australia, and know many people who do not have fibromyalgia, that have been diagnosed with Hashimoto’s disease.

I feel sorry for all the people who haven’t had this problem diagnosed.

Kind Regards, Robyn Grady robynonline@hotmail.com

Disability Rights UK has produced a manifesto on what the disability rights sector should be seeking from a post-EU UK. All EU-based disability rights existing at the time the UK leaves the EU to be maintained, including those in relation to air and ship travel, web accessibility, accessible goods and services, public procurement and manufactured goods Maintenance of existing disability rights which are incorporated in domestic law at the time of exit, including primary legislation remaining unchanged unless there has been detailed parliamentary scrutiny (i.e. no Henry VIII clauses which would permit change without scrutiny); and secondary legislation to be left in place with no watering down and no inadvertent discarding of, for example, disability equality rules and regulations as ‘red tape’ Continued Government commitment to the UK being ahead of the curve on disability rights – fully committing to implementing standards equivalent to the new European Accessibility Act once passed, building human rights clauses into future trade agreements and at least matching future progressive developments in EU disability rights law At least matching current EU funding in real terms of DPOs and disability rights – this includes matching by the UK government of all EU funding that supports a) disabled

people’s voice and participation, including employment support b) independent living c) other UN Convention rights and d) research on issues of importance to disabled people - with particular attention given to parts of the UK where loss of EU funding will damage the DPO sector A full equality impact assessment by Government of plans for freedom of movement, before those plans are agreed, ensuring no disproportionate impact on a) disabled EU citizens living in the UK b) carers c) disabled British citizens living in other EU countries and d) no detrimental impact on disabled people’s independence through reducing the PA workforce - this must involve detailed parliamentary scrutiny and public consultation on plans for EU citizens in the UK in terms of rules about ‘self-sufficiency’ and requirements for ‘comprehensive health insurance’ Continued mutual recognition initiatives useful to disabled people - for instance badges to enable disabled people to park and cards offering other access and benefits Giving the UNCRPD heightened status in domestic UK law - increasing the influence and impact of the UNCRPD on tackling discrimination and advancing equality Continued commitment to the European Convention on Human Rights

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Page six - Letters continued

Main proposals of the manifesto

Talking about your chronic illness

By Sarah Phillips

Page seven - Talking about your chronic illness

If you are anything like me, you will find it difficult to put into words just what life is like with fibromyalgia, and when you are stuck in a flare words just don’t seem enough, but that doesn’t mean that you shouldn’t talk about it. I’d like to share with you the things I have learnt along my journey so far about talking to people about my fibromyalgia and sharing my experiences.

The first thing I have found useful, is recognising when the right time to talk about my fibromyalgia is, for both the listener and myself, but when is the right time? It will be different for everybody, but for me the right time is when I’m not in flare, when I can be face to face and when I know the listener doesn’t have a whole heap of their own troubles to be worrying about (which can be difficult to know!).

When I’m in flare I don’t articulate myself particularly well, and I also find it difficult to talk about it over the phone, as I like to be able to gauge people’s reactions and whether or not what I’m telling them is going in. It can be hard to know when to stop when you are on the phone, but you can generally tell when someone has had enough of listening face to face! Also, I always start out by asking the listener how they are and if they are not in a very good place I know that isn’t the time to also be burdening them with my problems.

When I was first diagnosed I found it hard to know who to talk to first, after my husband of course, but what I did know is that relationships were likely to suffer if I did not explain to people why I had been so miserable and disengaged. The conversations had to start somewhere, but then there was a time when I felt like all I did was explain which equally wasn’t helpful, and it was difficult to get the balance right. In the end I told close friends and family, and then I limited it to the people who asked. I also gave close friends and family permission to talk to others on my behalf to save me the emotional exhaustion that came with constant explanation. For everyone else, they received the briefest of explanations and I now don’t spend a great deal of time talking about it day to day.

A very useful way of explaining my condition to people was through my blog. I often find it easier to articulate the way I feel through written word, and this often eliminated the need to talk about it further with many people. It also opened up other avenues of sharing my journey and raising awareness through Facebook, Twitter

and Instagram, which put me in touch with some truly inspirational people, and any amount of awareness raising can only be a good thing. If you don’t feel up to talking about it, or find the pressure of conversation and people’s reactions too much right now then why not try writing them a letter? You can put the letter down at any time, and come back to it when you are ready, which isn’t so easy to do in a face to face conversation.

Once people started to understand my fibromyalgia, it was time to move onto the next step, talking to them about what they can do to help me and what my limitations are, rather than just complaining about the condition and how rubbish I felt. By talking about your limitations you are letting those that matter to you know what they can expect from you and this results in less confusion and disappointment if you can’t join in that family party, or go on a long haul holiday. I would advise being realistic in telling your family and friends what your limitations are, maybe even setting them to what you actually think you can achieve on your truly bad days.

The end result can then be a pleasant surprise when that party falls on a good day and you do attend, rather than disappointment for all involved. For those that you live with, let them know what you can do on a ‘normal’ day and what they shouldn’t expect from you on a bad day. Also agreeing on how you are going to let them know it’s a bad day can be helpful in avoiding confusion and conflict.

Some people find it helpful to talk to those that matter to them with the help of a neutral third party, this may be their doctor, counsellor, or maybe even a charity volunteer. I was lucky enough that my family and friends were all completely empathetic and understanding but have spoken to many people with chronic illness who are not quite so lucky, with family and friends believing that they are making their story up and actually aren’t sick at all. In these circumstances a third party could be incredibly useful; they could even be a mediator.

Lastly, make sure anyone you talk to about your fibromyalgia or any chronic illness knows that you are still YOU. You are not your illness. It is important to still talk about all the normal things in life, celebrate when celebration is due, reciprocate the good will by comforting those that have listened to you when they have experienced difficult times themselves, and if you are as typically British as me, talk about the weather, and how much noise your neighbour made last night over a cup of tea. While people are generally happy to listen, support and encourage, they too have limitations in how much they can listen, support and encourage, and it is important that this is recognised. They will often be more than happy to listen but equally will want to talk to YOU, not your fibromyalgia.

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

The Benefits Agony Aunt

by Nim McCoan-Thornhill ESA & PIP Problems Welcome to the monthly benefits problem column for people with Fibromyalgia. The essential focus is PIP and ESA, but if you’ve other problems, do please also bring them to my table and I will do my best for you. In order to submit your problems please email office@fibromyaglia.com.

This month we meet a guy who has the ESA Work Capability Assessment upcoming.

Dear Phil, There are a few things to understand about the ESA Work Capability Assessment. Firstly, remember that you’re being assessed from the moment you’re in the building; some people suggest that even your approach to the building is assessed in some places, though quite how true that is I couldn’t say. Secondly, the assessor, whilst a medical professional, is using a computer program to assess you. They have tick boxes for each question. With Fibromyalgia, usually our answers do not suit tick boxes.

So I advise to give as much information as possible, and tell them you’re happy to wait while they add notes. If they say they’ll make notes after the assessment, say you’d prefer them to fill it in as you’re assessed, so that you can agree the answers with them. (The reason being that if they do it after the assessment they may have forgotten some specifics, or decide they can’t be bothered).

Prior to the assessment request that it be recorded. It is unlikely that you will need it, but in case you need to prove what was or wasn’t said in the assessment, they will accept the recording, but not your word.

Take someone with you if you can. Having someone with you makes it easier to speak up for yourself. It is also useful if your companion can take notes (you will be expected to allow them to photocopy the notes before leaving).

Different assessment centre’s operate differently. Some are quiet, some noisy, some efficient, some keep you waiting for ages. If the atmosphere in the waiting room affects your health in any way, or is inconvenient for you, make sure you or your companion tell the receptionists.

If you need to be in a separate room, ask. If you need a particular type of seating, let them know. If you need to wear dark glasses, ear plugs, etc., try and make it recognised that you’re doing so.

The assessor will come out to meet you. They will assess how you greet them, and how well you manage the walk from the waiting room to the assessment room.

They may find a reason to leave you standing for a while.

Don’t be polite. Handle all situations as you usually would, and make it known if you’re in pain or discomfort

(including psychological or emotional discomfort if you have relevant conditions). If you are photosensitive, request that the assessor lower or turn off the lights.

In the assessment they will ask you a series of questions.

The questions are designed in such a way that they can make assumptions from them. For example, from being able to load a washing machine, they deduce that you are able to bend down without any problems, you have a certain amount of problem solving abilities (sorting washing out), you can learn how to use machinery, etc.

So, if you can think of problems associated with the questions they ask you, speak up.

They will also be assessing your behaviour and abilities during the assessment. For example, from being able to bend down to pick up a bag, it may be assumed that you can repeatedly bend down without pain or discomfort.

There is a physical component to the assessment. I have recently heard anecdotal evidence that they may dismiss this if your physical difficulties are particularly evident. During this physical part you will be expected to perform such actions as bending down, and climbing on to a couch. When you are doing this, give the assessor a running commentary; tell them what causes you pain or discomfort at the time, what often causes you pain or discomfort, what actions you cannot repeat, if the actions will cause you fatigue, etc. If you know that an action they ask of you is particularly troublesome, ask that you may be excused of it, explaining why. They cannot force you to do anything.

Usually assessors are polite and professional. They are trained medical professionals, and will tell you what their speciality is. Many are sympathetic to the needs and trials of living with long term illness. But occasionally you will encounter someone who dislikes your particular ailment (Fibromyalgia, presumably). Don’t feel you have to prove you have that problem. Just prove that you cannot perform the activities that you cannot, and if necessary place a complaint about the assessor afterwards.

I hope this helps, Nim

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Page eight - The Benefits Agony Aunt

Dear Nim, I have my ESA medical assessment soon. I would like to know what to expect please.

I’m very nervous about it.

Phil.

Swollen Ankles – Fibro or not?

by Karen Crosby

Page nine - Swollen Ankles – Fibro or not?

I wanted to cover the subject this month because there is conflicting ideas and much to discuss around swollen ankles and fibromyalgia and hopefully dispel some misconceptions at the same time!

As there are still not enough medical professionals familiar with fibromyalgia, or lack information about it, the swelling of ankles issue can manifest itself at worst with a misdiagnosis, at best a lack of understanding.

One of the common misdiagnosis issues with this is mistaking it for arthritis but there are two differences to set them apart: With arthritis, the swelling affects the joints, whereas in fibromyalgia the swelling is in the area of the joint but is most likely to look more like oedema (swelling caused by fluid retention) and commonly occurs in the ankles, legs, feet, hands and arms.

Fibromyalgia can cause the swelling to appear without warning and disappear very quickly, and the episodes can be a few hours to weeks.

There has been a direct link to fibro swelling and stress, so avoiding stress in your life helps to avoid this!

Sluggish Lymph.

This is a common symptom of fibro, and sluggish or slow lymph means that normal drainage does not occur and this can cause the ankles to swell, as well as painful lymph nodes in the groin, neck and/or armpits.

Standing for too long.

For anyone, standing for too long can cause ankles to swell because the veins have to work twice as hard against gravity to pump blood back up the legs towards the heart, and this can happen much quicker for fibro sufferers because there is inflammation to deal with too, and super sensitive areas of the body do not help (this type of swelling is called pitting oedema).

I suffer with this a lot if I have stood for too long, but I find that walking for a long time does not cause it because I am working the leg muscles so keeping everything more healthy by stretching and moving the legs!

There are lots of other causes for oedema in the ankles and feet: -

1. RICE – when the ankles/feet are swollen there is a term called RICE which means REST, ICE, COMPRESS and ELEVATE. Rest with the feet up above the heart by lying or sitting with the feet up on cushions/pillows and stay like this for as long as possible.

A compression support also helps. I use an ankle support, which covers my ankle and the top of the foot, and you can get lots of different ones in any chemist.

As to ice, that is up to you, but wrap the ice in a plastic bag and a tea towel before applying to avoid the frost affecting the skin.

2. Yoga, I am a yoga teacher and I cannot stress enough how brilliant yoga is for any fibro symptoms, but for the ankles they become strong and flexible doing a yoga class at least once a week, to say nothing of the wellbeing and good sleep you can get!

3. Reduce salt intake, which helps to avoid build up of fluid in the legs and feet.

4. Have a warm bath with a tablespoon of Epsom salts in it, this is very soothing and helps pain and swelling – I use this!

5. Magnesium supplement, this is a good supplement to use to help reduce swelling in the ankles and feet, but make sure to check with a medical professional before taking supplements.

6. Massage is a great way to keep lymph flowing properly and circulation healthy and both of these help reduce any oedema.

7. Support tights – these are widely available and support the whole of the legs so help keep any swelling down, special compression stockings will be available from the GP or nurse and they will instruct you on how to wear them (take them off before bed).

Remember there are potentially serious medical conditions that can cause swelling in the ankles and feet like kidney or liver disease, so if in doubt check it out!

Water retention.

A lot of people can get water retention, and this causes sometimes extremely swollen ankles, legs and feet, but there are water tablets to counteract this.

Medication.

Leaky blood vessels.

This is not commonly known, but oedema can be caused by small blood vessels leaking fluid into nearby tissues.

Remember – REST, REST and more REST!

Whatever the cause of the oedema in the ankles and feet there are lots of things to do to help prevent it happening: -

Some medications can cause swelling in the ankles and feet, so whatever medications you may be on; it may be a good idea to check for any side effects causing this.

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Looking for alternatives…

by Karen Lovegrove

Life prior to being diagnosed with Fibromyalgia consisted of being very active, reasonably sporty and holding down a job in management for many years. I managed during all of this to bring up three very active boys, and foster many troubled teenagers. Slowly over the years I progressed to a life mainly consisting of either being in bed or on the settee, hardly ever going out because of pain levels or tiredness that wasn’t caused by lack of sleep.

Underneath the fogginess and fatigue, my brain was still whirling away, still intact! I started weaning off some of my medications, finding alternatives along the way or simply putting up with some symptoms. First to go were all of my IBS meds, I followed strict dieting for nearly six months until I discovered triggers, and combinations that triggered my IBS symptoms.

I stopped taking as many pain relief medications and cut down to the odd Tramadol or Naproxen only when necessary, yes this was hard but I wanted so desperately to get rid of the likes of Amitriptyline, Lyrica and Codeine & Paracetamol, next went the long-term antibiotics I was taking for skin disorders, instead I found some herbal tonics and natural creams to use. Already I was feeling more alert and able to get myself out of my front door and engaged in some physiotherapy and hydrotherapy.

Having thrown myself in to volunteering for UKFM on the Facebook Support group, which also aided bringing my brain in to some sort of resemblance of normality I was then offered a full-time job. A year earlier and it would not have even entered my head that I would be able to work again, but this was for a care company, behind the scenes working in IT, so I took up their offer. Having explained all my symptoms and diagnoses to them they were and have continued to be very sympathetic and understanding. (I realise I am incredibly lucky in this respect.)

So, the last medication I was left with was Pramipexole, a drug used for Parkinson’s Disease. One of my symptoms is a left side weakness and instability, and chronic Restless Legs Syndrome. My RLS would be present 24 hours a day, meetings at work without Pramipexole would not be possible, let alone sitting in the car travelling as much as I do from office to office.

Even with this medication there were occasions when I had break through pain and RLS so sleeping would be a

long distant memory! I have spent many nights pacing up and down or taking magnesium baths trying to alleviate the awful feelings RLS produced. Pramipexole became my wonder drug, one I couldn’t even consider being without. I would panic if the pharmacist couldn’t fulfil my complete prescription. I have been known whilst working away from home to have a prescription faxed through to a local chemist and almost staging a sit in until this was done!

As was my last medication I started to devise a plan to wean myself off them. It was then I came across some research on CBD Vape and CBD oil. Totally legal in the UK, I decided to give it a two-week trial to see if it would help me.

Day one and I disappear outside my flat in to the gardens and secretly puff away, I can safely say it didn’t feel as if it had done anything, and I could still feel the full effect of RLS, but I tucked myself in to bed and before I knew it I was fast asleep and managed a full 8 hours sleep. With little back ache (another ailment of mine) in the morning… Hmm interesting I thought! Day two, three and four I slowly increase the amount I am inhaling, by day four I felt no effects at all from RLS, it was a thing of the past a long distant memory I was sleeping better than I had for years and my back ache had reduced significantly. I decided to lay off the vape for a few nights. First night no effects at all from RLS or Fibro pain, second night just a few niggles, nothing I couldn’t manage but by the third night of not taking anything RLS was creeping back and my aches and pains were back. So, I puffed away, and yet again I was pain free.

In conclusion, this has not only helped me at the time of taking, but the effects are lasting two to three days at a time, which is incredible in my book. Three weeks on and I now vaporise every third night or so, my sleeping is markedly improved and I can also report a little weight loss without trying, along with a reduction in oedema swelling in one of my ankles, bonus!

I am not saying this would or can work for everyone, but it has most certainly been very beneficial for me.

If you want to research for yourself or discuss further please join us : Search within Facebook for: Legal Marijuana products for Fibromyalgia

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Page ten - When you can’t see the wood for the trees

In the last 2 years, I have been working towards coming off most of my medications. For no other reason than the fact that the brain fog and fatigue I have been experiencing had become chronic.

The Perils of Bedtime

by Brandi Clevinger Getting my kids to bed each night is chaotic, funny, and frustrating all at the same time. The shenanigans start around 6:30 and go until about 8:30 each evening.

Two full hours of the same requests, demands, and questions night after night. And each night we hope it will be better than the last. Thankfully, the act itself is less engaging each year as the kids get older, but they make up for it in other ways. That’s another topic for another day.

At the end of each day, I look forward to relaxing with my husband, Tim, while watching television. Whether it’s a movie or a show, it doesn’t matter to me, because it’s a time I get to slow down and decompress from the day. The days are long and filled with constant moving (or not moving due to high pain levels, but those days are just as exhausting for me). Even when the kids are in school, there are obligations to be met. It’s exhausting to even think about it.

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Either way, moving or not, I’m wanting to be on the couch, just being. No demands from the kids. No housework to worry about. No obligations or commitments to fulfill.

Just being. It’s a beautiful and wonderful time to gather my thoughts, and to hear those thoughts without the interfering background noise that is my house.

There’s only one catch. There’s one obstacle that stands between me and that state of being: bedtime.

How can one word evoke feelings of defeat before it even begins? Because it’s a battle that must be faced.

Crazy, I know, but it’s true. And I also know I’m not the only one that feels this way. Just like us, parents are waging mini bedtime wars around the globe each evening.

Our nightly match commences upon the sounding of a bell. Literally, a bell chiming. Why? Because after dinner we engage with our children in some way. Dinner time is a place where we talk, but interacting with them in a fun way is also important for us as a family. If we didn’t have a bell reminding us of the time, we would play past bed time. That starts a domino effect of cranky kids, cranky parents, and results in a chaotic mess for the next day. It’s not pretty. We know because we’ve learned this the hard way. Several times.

So, this bell chimes to let us know we have five minutes before transitioning to the next phase: baths. Side note: I get the purpose of the transition thing. Experts say it’s the best way to get your kids moving from one activity to the next with the least amount of resistance. Truly, I

understand the intent. The reality? It doesn’t work for us. It doesn’t matter if my kids have a heads up that it’s nearly the time to do something else or not. Either way, a rebuttal will happen. I do it anyway in the hopes that it will work at some point.

The bell has chimed again to let us know it’s bath time. Let the battle begin. It starts gradual with one of a few things taking place: stomping of feet, pouting lip, continuing play as though they hear nothing, or the statue move where the kid stands there, unmoving, with a question of, “what is happening?,” on their face. Their best trick? Getting along with no fighting. That’s their power play and they only pull it out when all else fails.

They figure if they do any of these things, I will forget what it is I’m doing and they can continue to play. It’s a trick they’ve perfected over the years as they’ve learned to better understand fibro fog and the benefits they can reap from it. My husband and I have learned to keep moving the bedtime train forward and not to give in to their futile attempts, regardless of power plays.

Remember: you need time to relax, so focus on the task at hand.

As Tim and I move upstairs to the kids’ bathroom, they will begin an onslaught of questioning in an effort to reason the need of a bath/shower. Questions such as, “Why do I need to take a shower when I took one yesterday?” or “I just sat in school/laid on the couch/ played inside today. Why do I need to shower when I did nothing?” or, in light of learning something new from a recent show we watched with them, “Why do we need to bathe when Adam (the show’s host) said bathing every day isn’t good for the skin?” I admit, that’s a good one, but still doesn’t work. I’m then forced to answer with the one response I’ve loathed since childhood, “Because I said so!” Drastic times call for drastic actions, folks, and that includes answering with phrases you usually avoid.

I’m closer to relaxing. Don’t give up now. We’re in the home stretch!

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Okay, kids are now in bed, bathed, read to, and watered with lights out. By now it’s time for the older kids to have

lights out. This is the closing of battle. Their attempts to miss bedtime have become exhausting to them and they are ready to wave their tired little arms in surrender to sleep. Tim and I tuck each one into bed, praise them on their successes of the day, encourage them if there were any failures, and ensure them that mommy and daddy love them unconditionally, despite them thinking we would send them to bed to face the death of thirst.

We have won. For now.

The bedtime battle was once again fought victoriously and we will live to face another day until the next bedtime arises. For now, we will surrender our bodies to the couch of relaxation and wind down from the day.

We will smile and share our day’s events, thoughts, and dreams while soaking in the love of our family.

The perils of bedtime are defeating at times. I’d like to spend more time into the night with our children, but they need their rest and I also need time for me. For us.

We need the time to decompress from the day and as a couple. The daily pain I endure varies from day to day, but the need to relax and have a moment of peace is one that remains steady. Some nights are better than others, and that’s okay because at the end of the day I can rest knowing I’ve done my best both as a parent, and as a thriver.

In next month’s article, we will be tackling the myths of the paleo diet. Do you have any advice or tips? Please email me at brandi@beingfibromom.com and it could be featured in the article I am the writer and creator of Being Fibro Mom (www.

BeingFibroMom.com) as well as a member of the Board of Directors and Fibro Parenting program director for the non-profit organization Support Fibromyalgia.

I am a follower of Christ, wife to a supportive husband, mother to four sweet children, and a fibromyalgia thriver. Being Fibro Mom was created in 2013 with the hope of helping fibromyalgia sufferers become fibromyalgia thrivers.

My mission is to advocate for parents while enduring the hardships of fibromyalgia.

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Page twelve - The Perils of Bedtime

Now it’s time to divide and conquer. Tim helps the younger kids with bathing while I get their pajamas and beds ready. The time we’re apart is crucial in keeping the task on track as the kids see weakness in this division. I accept the challenge with faint confidence because the end is near. Victory is nearly ours, but we must not get overly confident because that could be our demise. One night they will succumb to our routine and not fight it, but that night is not tonight. Moving about their rooms, readying their beds, I maintain the look of determination in a futile attempt to deflect any further battles.

Inside, I’m exhausted. My body is pulsating with pain from my tender scalp to my aching feet. My energy is dangerously low and my body’s functions are running on fumes. Mental exhaustion is rendering every light, sight, and sound to be stronger than it really is, and the need to run to my closet for isolation is becoming more powerful with each step. It’s this time of day that is hardest to push forward, but I do anyway. Knowing the end is near makes it easier to put one foot in front of the other and keep the look of a strong front.

Now that the younger kids are bathed and ready to go straight to their beds for story time, the older kids are ushered into the bathroom one at a time. This is my duty while Tim reads the younger kids a story.

Note: To avoid conflict, Tim chooses the story from neutral grounds: books that are the family’s books. In addition, he will read the story using funny voices, facial expressions, and placing the occasional ‘poop’ word in the story. The kids eat this up. They don’t realize this is his strategy to redirect their attention from the impending bedtime and to diffuse any arguing. They see it as fun time with daddy since he’s been at work all day.

While the older kids bathe, I keep busy by moving in some way. It could be readying laundry for the next morning, tidying my room, or talking with the older kids as they take turns showering. If I stop moving, it’s hard to start again. It’s best if I just keep it going even if it is shuffling or moving so slow you need time lapse to see progress. Progress is progress, right? Right!

Where were we? Ah, yes! Storytime is over and now it’s time for lights out for the younger kids. This is where it becomes interesting in a medical sort of way. For some strange reason, my kids will go an entire day without being thirsty. Until bedtime. Then the thirst they’ve managed to stave off the entire day comes hurtling at them full speed. By this time of day, they have an overwhelming need for water in a way in which they are convinced that, if they don’t have it,, this thirst will consume them and they will surely die. I assure them that they will not, indeed, die from said thirst while they sleep. Obviously, it’s not convincing. So, downstairs they go to save themselves from the threatening thirst. This is a cycle that passes through each of the kids regardless of their age.

The Biggest Barrier of All

by David Jenkin

We have discussed in previous columns, the various barriers to exercise that present themselves to people, even evaluated their legitimacy as genuine barriers, but the biggest barrier of all remains a lack of motivation, of simply not wanting to do it. The reasoning behind this is fairly sound – engaging in formal exercise involves time, exertion, making yourself feel uncomfortable, maybe you hold a fear of increased pain? It therefore requires quite some dedication to even get started.

So where does this inspiration come from?

increases mobility and flexibility, but many people remain sceptical of any success they could achieve until such a point they feel they have little to lose other than to try it.

Proactive Initiation There are many people with Fibromyalgia Syndrome who are fully aware of the ramifications of a sedentary lifestyle.

They may have observed it in other people perhaps, been advised by their medical professional, done some reading or otherwise established the benefits of exercise prior to problems occurring, acting in a preventative manner, and this is known as Proactive Initiation.

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Teachable Moments Quite often people look to important events in their life as their motivation – declining health, increased pain, the loss of a loved one, maybe even a sense of boredom, could all promote a sense of enthusiasm for attempting a programme of exercise and accessing the numerous benefits that would result from it. Consider this for a moment, a friend, relative or family member suddenly requires a heart operation, these kind of events have a way of making us think about the fragility of life, how easy it is to move from day to day doing various things that we take for granted, and then the next moment we are in an ambulance genuinely fearing for our lives. These wake-up calls are called ‘teachable moments’ and are not as uncommon as it may seem from first glance.

Reactive Strategy Many people might choose to undertake a programme of exercise as a reactive measure to something that they wish they could do but cannot very easily - playing with children/grandchildren, going on long walks without getting out of breath, difficulty carrying heavy shopping bags, and struggling to fulfil daily living tasks without difficulty e.g. getting out of chairs, climbing stairs, struggling with housework and gardening etc. The motivation garnered to address problems such as these are termed as Reactive Strategies, because it developed not in a way that sought to prevent such issues, but as a consequence of experiencing them. With specific regard to Fibromyalgia Syndrome, the biggest reactive strategy is to try and lessen pain, other notable goals include reducing fatigue, increasing flexibility and lowering the amount of medication they need to take (and with it the numerous side-effects they no doubt feel). It has been consistently demonstrated that keeping as active as possible reduces pain levels, fatigue and medication requirements, and

Taking This Forward It is never too late to start, and you may find that if you do, that motivation to do so may well have been found in one of the three categories listed above, hopefully Proactive Initiation for preference, and once you do, it really is a case of starting at a low level and building up from there.

Doing what you can and stopping before you overdo it.

Beginning a programme of exercise can be as simple as starting with a ten minute walk down the road and back again once a day. If that is 10mins more walking than you have been used to doing then you are on the right path.

Phased Exercise Martin Westby (your magazine editor) and I have recently co-authored a Self-Help Exercise Guide, and in it there is a chapter which discusses Phased Exercise in greater detail. But to condense it here briefly, Phased Exercise describes the notion that you do not progress onto a more intensive level (or phase) until you are comfortable in the one you are presently placed. This is the style of exercise programming that I recommend most, although it does take some discipline. If you are happy in a comfort zone then you will not progress to a level that you are capable of, and the benefits that you stood to gain might evade you.

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

How you do this is up to you – you can increase your workload in one of four ways. Let’s say for argument sake, that you are presently walking 10mins, once a day, three days a week. You have successfully managed this for three weeks. It is time to progress. You may consider increasing the Frequency by walking 10mins, once a day, four days a week or even 10mins, twice a day, three days a week; you might increase the Intensity by still walking 10mins, once a day, but on a hillier route, or aiming to still walk for 10mins but covering a slightly longer distance in the same time frame by upping the speed. Increasing Time is as straightforward as increasing your walk time to 15mins, or even 12mins, whichever suits you best. Finally, you can progress the exercise by changing Type which is something best done if an exercise is too easy, too difficult, or after some time has passed and the exercise has been progressed sufficiently in other ways. So you may look to change to cycling, or swimming, or a programme of home exercise

So What To Do? Basically, look at the following questions: What do you enjoy? What is going to work for you? What are you going to be able to stick to? You need to choose an exercise that ticks all three question boxes. You might enjoy walking, but will you do it in the rain? You might like swimming but is it practical getting to the swimming baths regularly?

My recommendation is this – establish a programme of home exercise, one is included in the Self Help Exercise Guide (http://www.ukfibromyalgia.com/treatments/ self-help-exercise-guide-fm.html) or you may have an exercise DVD, something given to you by a medical professional or a physiotherapist, or you may have past exercise experience that enables you to create your own.

You may like to do this every day, Bruce Forsythe famously carries out a home exercise programme once a day, but if not – you have something to substitute a preferred activity if you are prevented from doing it. You may have chosen cycling but have a puncture or a broken chain, you may have chosen walking and then encountered a week of torrential rain. In both instances, rather than doing nothing, you have a fall-back plan which ensures you are doing something at least. You can then return to your desired activity when it again becomes possible.

Conclusion It is never too late to overcome the biggest exercise barrier of all – not wanting to do it. There will no doubt be exercise disciplines that you do not want to do, for instance you may not be a swimmer, the idea of running may bring you out in more of a sweat than the running itself, and you may not be comfortable with the idea of exercising in your lounge on your own. But there will undoubtedly be something that you can do and will enjoy. And if there isn’t, there are ways to manufacture an exercise discipline so that it does. For example, you may not enjoy walking....until you drive to somewhere where walking is actually very pleasant e.g. the seafront or a nice park. You may feel self-conscious doing exercise in your lounge, but put on a dance CD or a favourite DVD/TV programme and it might not seem so uncomfortable.

By employing the phased exercise techniques described, you will only ever be working at the right level for you, and progressing at the right speed for you, all the while completing an exercise that you don’t mind doing.

Suddenly the concept of exercising regularly doesn’t appear so imposing? This is because as humans, I expect we are all guilty of taking shortcuts in our thinking, and usually to the worst case scenario rather than the best case. Whenever the word exercise crops up, people envisage all of the negative connotations described in the opening paragraph, and omit the more positive thoughts about just how workable it can be for them. So, start to thinking – what do you enjoy, and start planning. And good luck!!

To order a copy of the Self Help Exercise guide please follow the following web link: http://www.ukfibromyalgia.com/treatments/ self-help-exercise-guide-fm.html Or telephone 01202 259155 Alternatively, you can email the magazine at office@UKFibromyalgia.com or myself on davidjenkin@hotmail.com and we can assist you in purchasing your copy. Maybe somebody could order you a copy for Christmas! To contact me directly, or enquire about 1:1 training prices please check out my website www.davidjenkinfitness.co.uk or email me directly on davidjenkin@hotmail.com.

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Page fourteen - The Biggest Barrier of All

Progress to quickly and you will overdo it, and maybe make yourself unwell, or increase pain levels. My general recommendation is that once you complete the phase you are in three times, successfully, you may want to consider moving up a phase.

Nutrigenomics- Part Two

by Emma Stark

By the end of this article acetylation and methylation will no longer sound like cleaning products and instead will make sense.

Now before I get started I do have a confession. I mentioned that I would explain all the terms within the table within the next two articles. However, upon reflection; I can say, I underestimated the amount of information I would need to explain. So, this is Part 2…. to be continued.

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In “Nutrigenomics Part 1” I shared this table…

Nutrient

Food Origin

Epigenetic Role

Methionine

Sesame seeds, brazil nuts, fish, peppers, spinach

SAM synthesis

Folic Acid

Leafy vegetables, sunflower seeds, baker's yeast, liver

Methionine synthesis

Vitamin B12

Fortified plant milks, nutritional yeast, meat, liver, shellfish, milk

Methionine synthesis

Vitamin B6

Fortified plant milks, nutritional yeast, meats, whole grain products, vegetables, nuts

Methionine synthesis

SAM-e (SAM)

Popular dietary supplement pill; unstable in food

Enzymes transfer methyl groups from SAM directly to the DNA

Choline

Egg yolks, liver, soy, cooked beef, chicken, veal and turkey

Methyl donor to SAM

Betaine

Wheat, spinach, shellfish, and sugar beets

Break down the toxic by-products of SAM synthesis

Resveratrol

Red wine

Removes acetyl groups from histones, improving health (shown in lab mice)

Genistein

Soy, soy products

Increased methylation, cancer prevention, unknown mechanism

Sulforaphane

Broccoli

Increased histone acetylation turning on anti-cancer genes

Butyrate

A compound produced in the intestine when dietary fibre is fermented

Increased histone acetylation turning on 'protective' genes, increased lifespan (shown in the lab in flies)

Diallyl sulphide (DADS)

Garlic

Increased histone acetylation turning on anti-cancer genes

I promised that all these confusing terms would make sense and become beneficial knowledge. I explained all about Resveratrol and this month I would like to explain histone acetylation and methylation.

As you will see from the table above, these strange words are mentioned quite often. When I first started researching epigenetics I could not get my head around these two terms and what they meant for me. To me it was difficult to fathom that broccoli could be linked to something that could be so complex as to change how your genes are expressed. After a lot of reading it all started to make sense and has become increasingly interesting to me. I cannot wait for further research to

be released for us to understand more of how we can influence our genetics. I would like to share with you the simple way in which I now understand how your genes can be read and expressed.

Many different signals can trigger a change to how your genes are expressed. What we eat, drink, breathe, do, think etc. These all have signals to how our genes are expressed. Let me break it down….

So, we have all seen the typical double helix which we recognize as DNA. Every cell in your body contains the same DNA, the same list of instructions. For these to be expressed in different ways, there are triggers and switches making it simple or more difficult to read the instructions.

This can be a good or a bad thing. For instance, you would want to make it as difficult as possible for your body to access, read and act upon genes which promote the growth of cancer. It would make much more sense to instead block these from being accessed and make the genes which promote cancer fighting as easily accessible as you can. All this is possible when you know how.

As you can see from the diagram, chromosomes are made up from chromatin fiber and are in the nucleus of each cell. Chromatin is comprised of DNA and proteins such as histones. The DNA is wound around histones and together form nucleosomes. So, this is where methylation and acetylation comes in. Nucleosomes can move around to make parts of the DNA more accessible and simple to read or very difficult to read. This is essentially how your body can use the same DNA for all kinds of cells. The genes are modified by various triggers to act in certain ways. Within your cells, there is transcriptional machinery which has the ability to read your DNA and make proteins in order to form different cells.

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

In more simple terms, DNA methylation turns genes off or silences them and histone acetylation turns genes on or activates them. Now that the tricky bit makes more sense, I can explain what this means for you. As you can see from the original table Genistein, Sulforaphane, Butyrate and Diallyl Sulphide all play a role in methylation and acetylation.

Genistein is a type of phytoestrogen which helps prevent breast, prostate and other lumps from growing and spreading. It’s found in soya beans and has been a point of a lot of studies within the world of science. It’s been rumored that soya can be bad for you, due to containing hormones. This is partly correct. It does have hormones, however; these hormones are plant hormones that have a different effect on the human body. Phytoestrogens aren’t generated within the endocrine system, you can only have them by eating plants that come within the phytoestrogenic category. They also can’t be classed as a nutrient as your body doesn’t create any kind of symptoms of deficiency. What they do offer is the ability to block receptor sites against estrogen which has led to numerous studies and results.

Studies have shown that Japanese women generally have a lower risk of breast cancer, upon further testing, it was seen that Japanese women often have higher amounts of Genistein due to traditionally high amounts of soya being used in the Japanese diet. There have been a lot of studies on the Japanese diet due to disease mortality rates being particularly low compared to other countries.

This has been concluded to be mainly due to diet of little to no dairy and a high amount of soya and plant foods.

This is a great example of how our food can turn our genes on and off.

Below is the conclusion of research into the effects of genistein for treating prostate cancer.

ulcers. It can be found in your cruciferous veg such as broccoli (tenderstem especially), cauliflower, brussels sprouts turnips and kale. Sulforaphane triggers changes in genetic expression, however, it is also a powerful antibacterial on its own. Anyone who has ever suffered from a stomach ulcer will be familiar with the Helicobacter Pylori bacterium. This triggers the infection that leads to stomach ulcers. I used to have a duodenal ulcer until recently, after going onto a plant based diet and reducing my medication it cleared up of its own accord. If only I had known 20 years ago!

Butyrate has also shown to be beneficial in numerous ways. This article – http://www.sciencedirect.com/science/article/pii/ S0304394016300775 shows that butyrate can help treat and prevent brain disorders. It has also been found to reduce stress, improve inflammation, insulin sensitivity and metabolism. As it is created through the fermentation off fiber, you can add another benefit of upping your fiber intake! The more dietary fiber you eat such as sweet potatoes, whole grains, beans, vegetables, fruit and nuts; the more butyrate will be produced. It has also been found in high amounts in butter, however, the amounts of fat will surely reverse those good effects!

I’m sure you can see how current research will help us all begin to make healthier choices and help ditch the common trends of illness within our families. Have you got any concerns over current or past health issues you would like to address? Does your family have a high risk of a certain disease or condition? Get in touch!

Emma qualified as a nutritional therapist after struggling to deal with the symptoms of fibromyalgia and M.E. She has previous experience of strength and conditioning from being a rugby coach for years before becoming a mortgage advisor and having to leave her job for health reasons. Now she is committed to helping others with what she has learned and continuing recovery.

“This is the first report to show that BTG3 is silenced in prostate cancer and can be reactivated by genistein induced promoter demethylation and active histone modification. Genistein showed similar effects to that of 5Aza-C, which is currently undergoing phase II clinical trials as a treatment for prostate cancer. Since genistein is a natural, non-toxic, dietary isoflavone, these results indicate that genistein is a novel, advantageous therapeutic agent for treating prostate cancer.”

For the full article please see here - https://www.ncbi. nlm.nih.gov/pmc/articles/PMC3954042/ Sulforaphane is another magical phytochemical which is found to help reduce the risk of stomach cancer and The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Page sixteen - Nutrigenomics- Part Two

Methylation of DNA and histones causes the nucleosomes to pack tightly together. This means that the transcriptional machinery can’t read the genetic code, which in turn silences the gene. Histone acetylation causes the nucleosomes to be packed together loosely, meaning the transcription machinery can read the set of instructions to express the gene.

BRIAN BARR TESTIMONIAL Brian Barr is a solicitor at Brian Barr Solicitors who specialises in representing fibromyalgia sufferers with accident and insurance claims.

Brian Barr Testimonial

Brian Barr Solicitors • Grosvenor House • Agecroft Road, Manchester M27 8UW Tel: 0161 737 9248 • Fax: 0161 637 4946

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UK Fibromyalgia

Year 16 • Issue

UK Fibromyalgia

8 • June 2016

UK Fibrom

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Page seventeen - Brian Barr Testimonial

I was involved in a car accident when a van drove into the side of me. This triggered my fibromyalgia to increase from very mild to chronic severe. My insurance company was useless and I read about Brian Barr Solicitors in your magazine so I took the bull by the horns and phoned them, left a message explaining what had happened to me and within 20 minutes Brian Barr called me back to discuss the case – wow. He was so kind and said he would take my case and the solicitor he allocated to me would call me back. I was amazed when only an hour had passed and Phillip Cohen from Brian Barr Solicitors called to discuss how we would go forward.

Philip was amazing and worked so hard on my case and got me a wonderful settlement. The care, time, respect and understanding he gave to me and my case was way beyond anything I had expected. My previous ones were totally useless and advised me to take a knock for knock as it was a head on impact ….. it was a side impact and I didn’t even have a scratch on the front of my car, they failed to see this even though I had supplied a mammoth amount of pictures and diagrams. I don’t know where I would be without Phillip Cohen and Brian Barr Solicitors.

I would recommend them to anyone.

My sincere thanks to Phillip and his wonderful staff that all worked out of hours to accommodate my working pattern. Is there any way you could put a thank you in your magazine PLEASE? Deirdre Munn

d to romyalgia Relate Are CFS and Fibease? by Dr. Cort Johnson Parkinson’s dis Also including:

Dr Morton’s – ‘The Med Helpline’ – says fibro ical myalgia was 2015’s top condition searc by people before callin hed for g a GP. Top 10 heal th searches in 2015 in the UK

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2. Chickenp ox 3. Shingles 4. Diarrhoea 5. Pneumon ia Way Yoga The 6.

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Change… are

By Karen Crosb

By Nim McCoanDiab Payment etes rove Bancroft Independence e By Heather

By Karen Loveg lgia and the Personal Jan Sjögren’s Syndrom People say! By 8. Scarlet Feve Campaigns • Fibromya • Unlocking the Mystery of r lgia Awareness quality • The Things Jenner • Finding The 2016 Fibromya Questions Answered By Dr and improve sleep other name! By Helen Watts 9. Tonsillitis ur muscle soreness

By Aida by any Ask the Doctor-Yo our visible illness cherries can ease on • Fibromyalgia Montmorency Fibromyalgia –

By Sue Ingebrets Blake • PoemResearch shows with Sweet Potatoes 10. Anxiety of Chronic Pain Window By Sharon & Garbanzo Beans Surprising Source

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By Jan Sadler

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The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

The Fibromyalgia Exercise Guide

by David Jenkin

The guide is designed to teach people how to be active managers of their health in relation to living with Fibromyalgia. £16.95 including post and packing to a UK postcode.

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In this issue: Twenty Fibromyalgia Ambassadors Announced, Fibromyalgia: The Unbelievable Diagnosis By Brandi Clevinger , Softly, softly does it By Linda Hall. Sleep problems - Your Questions Answered By Dr Jenner , Gadgets and aids to daily living By Helen Watts, One Fibromyalgia Fitness Caution You May Not Know By Sue Ingebretson, Change for the bet ter? Naomi Har vey, Montmorenc y Cherries – My Outcome By Karen Crosby, PIP Suppor ting Evidence

By Nim McCoan-Thornhill, Equality Act duty of care not being met with Government inaction “failing disabled people” The Power of Mind and Body By Jan Sadler, Finding Motivation By David Jenkin, FM Survey-sleep, FM Cartoon By Brendan, FM Cookbook- Easy vegetable soup & Delicious vegetable chilli

IS YOUR FMLIN GREMLIN TRYING TO STOP YOU EXERCISING?

The Gorilla In Your House

Also: Powerful Evidence That Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) Are Real and Mainly Physical By Richard Podell, M.D, Side effects of HRT By GP associate specialist Dr Jane Woyka , How your negative self-talk keeps you overweight and stuck By Sally Baker and Liz Hogon , Muscle Soreness and Fibromyalgia By Sue Ingebretson, The 7 best tips to manage the ups and downs of your pain By Jan Sadler, Coccyx Pain By Helen Watts, Manual Lymphatic Drainage & the Bowen Technique By Karen Crosby, How to get some sleep when suffering with Restless Leg Syndrome (RLS) By Karen Lovegrove, Napping: Helpful or Harmful? By Dr Jenner, Leading UK charities work closer together, Fibromyalgia and ESA by Nim McCoan-Thornhill, Bedroom Tax challenge to be heard by Supreme Court, Would you like priority access to over 9000 accessible UK toilets?, You are a receptionist! By Micky Cocker, Mind Power By Rowena Jacobs, How do you spend your days? By Naomi Harvey, Smelling Sweet By Marcus Webb, Coping with Fatigue By David Jenkin, FM Cartoon By Brendan, Legal Questions answered by Brian Barr, Recipe By Christine Craggs-Hinton This magazine is for informational purposes only and should not be used as a substitute for the medical advice or services of your health care providers. Every effort has been made to make this publication as accurate as possible. This information and adverts are not intended for self-diagnosis, treatment, or the justification for accepting or declining any medical treatment for any health problems or diseases. Any application of the information presented in these pages is at the reader’s own discretion. The advertising of a product ,therapy or clinic in FaMily does not imply that it has been tested or it’s use endorsed by UK Fibromyalgia.

Also:

David Jenkins on Graded Exercise Fibromyalgia magazine is for informational purposes only and should not be used as a substitute for the medical advice or services of your health care providers. Every effort has been made to make this publication as accurate as possible. This information and adverts are not intended for self-diagnosis, treatment, or the justification for accepting or declining any medical treatment for any health problems or diseases. Any application of the information presented in these pages is at the reader’s own discretion. The advertising of a product ,therapy or clinic in Fibromyalgia Magazine does not imply that it has been tested or it’s use endorsed by UK Fibromyalgia Please note that partial refunds are not available for Fibromyalgia Magazine subscriptions once an initial 4 week period has passed from time of ordering.

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The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Keeping Faith By Linda Hall www.audiomeditation.co.uk

Linda Hall is a meditation teacher, personal development coach and audio author with over twenty years experience in the integrative healthcare field. She runs meditation and mind-body awareness courses for patients at The Optimum Health Clinic, a leading UK clinic specialising in the treatment of M.E./ C.F.S and Fibromyalgia. Her guided meditation audios for relaxation and self-growth are distributed globally.

Believing that difficult times will pass

I was brought up in the Church of England and educated in a Catholic convent school. By the time I’d reached my early twenties, I had decided that religion wasn’t for me and chose to explore my spirituality outside of any organised belief system. Yet faith, in the secular sense, has been a constant in my life, supporting me through the worst of times and facilitating the best. I was a shy, sensitive child, happy in my own company and content in the world of my imagination. A belief that life was ultimately good, quietly grew within me from the security of a stable and happy childhood.

Supporting health and well-being

Page nineteen - Keeping Faith

Drawing strength from faith However, the nature of things are rarely straight forward and events in later years would shake the foundations of my protected world. A broken engagement triggered depression, anxiety attacks and an eating disorder, uncovering issues of low self-esteem that had smouldered unaddressed since adolescence. Then, at the tender age of twenty-six, I lost my beloved mother to cancer. Yet even as grief consumed me, I believed that I would get through this painful episode, and, that in time things would get better.

Over the coming years, I was to reinvent myself from artist to personal secretary; then craftsman to massage practitioner and healer; finally becoming a meditation teacher and psychology practitioner. Throughout this journey, faith in life’s possibilities, and a growing belief in myself, kept the way ahead open, shining just enough light for me to take the first steps on each new stage of my metamorphosis.

In my late forties, following the end of a long-term relationship and the death of my father, whilst running my busy massage practice, I experienced a break-down in my health and became ill with M.E./Chronic Fatigue Syndrome, a condition that lasted for almost a decade.

This challenging, isolating period in my life demanded that I dig deeper still to develop new psychological resources. Once again, faith in a positive outcome played a fundamental role in keeping me going and supported my eventual recovery.

Since then, my experience of working with people who are chronically ill has shown me that faith in a positive outcome plays a vital role in the management of symptoms on a day-to-day basis and the overall recovery process. To believe that difficult times can be endured and will pass, is fundamentally important. Where despair closes doors, faith opens them and keeps them open.

Viewed within the context of health and well-being, faith in a positive outcome supports the nervous and immune systems by helping to keep stress levels down and through triggering the release of mood raising hormones and chemicals that act as natural pain killers. Scientific research in the field of psycho-neuro-immunology shows a direct link between psychological states and nervous and immune function. But it is not just about believing we can survive the hard times. Faith engages our minds and bodies with things that actively support and nourish us, and enables us to create more fulfilling futures for ourselves. Faith in some form of positive outcome is a pragmatic endeavour that has served an evolutionary purpose since time immemorial, helping us to endure and survive!

If it’s not alright, it’s not the end My own faith is rooted in the belief that an inherent, positive force for renewal exists within the energy field connecting everything. The seasons and cycles of nature remind me that all of life is a process, and that as change is assimilated, in time, things have a habit of returning to a relative state of harmony. I find this sentiment is expressed perfectly in the phrase: ‘Remember everything turns out all right in the end, if it’s not alright, it’s not the end.’

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

A pragmatic optimist, who subscribes to the sensible advice ‘Trust in Allah, but tie up your camel’, I try to put in place all that’s reasonably possible to support a good outcome, then surrender to trust. For me, it’s a course of action that makes perfect sense. To do otherwise opens the door to anxiety, doubt and fear, which all too often limits potential and undermines physical and mental health.

Fake it to make it Our beliefs determine how well we cope with life’s challenges and our ability to live successful, fulfilling and happy lives. Through identifying and examining unhelpful belief patterns, we can start to build more useful ones that serve us better. Like most things that are worthwhile, conviction in a positive belief has to be learnt, and requires an investment of commitment, time and energy on our part. At first, we may need to ‘fake it to make it’ – to act ‘as if’ we believe. What is essential, is that we genuinely desire the positive outcome. Using affirmations and creating pictures in our minds of all the benefits the belief will bring is a powerful way to reinforce this. Engaging with activities and thoughts that support the belief rather than detract from it builds ‘evidence’ for faith to grow from.

Here are some suggestions to help you explore building your own reserves of faith in a positive outcome.

Steps to Building Positive Beliefs 1. Examine how you look at yourself and your life.

What sort of negative things are you in the habit of saying to yourself?

2. Identify the beliefs that cause you to think in that way 3. Examine those beliefs: Where do they come from?

Perhaps some of them aren’t actually yours?

4. Ask yourself: Are these beliefs useful? Are they helpful?

5. If they are not, ask yourself: How can I look at this in a way that’s more beneficial and fulfilling?

6. Picture yourself in the future, viewing things in this new way. As you do this, notice all the positive changes that come about.

7. Create a manifestation board of how you’d like your life to be. Include all the elements you’d like to see in place. (Draw a picture, write a poem, add motivational ‘Can do’ statements and inspirational quotes) 8. Make a list of all the things you can do to help ensure your life will be this way.

9. Decide one thing you can do now to make a start 10. Make a long-term plan. Be realistic, make your goals achievable and doable. Note what needs to be in place for each step of the way before you move on to the next

Picture yourself easily taking these steps and enjoying them 11. Send out your intention to the universe. Let it know what you want. Be specific.

12. Use visualisations and affirmations regularly to build your faith in the outcome.

13. Engage with activities and thoughts that support your new belief I hope you’ve enjoyed this article and found it useful. I wish you a good month. Go well!

Linda at audiomeditation.co.uk

More on Building Belief in a Positive Outcome: Receive daily support: Follow me on Instagram for motivational statements, inspirational quotes, everyday mindfulness tips and relaxing meditations and much more! https://www.instagram.com/lindahallmeditation/ Watch my YouTube video ‘The Gift’ – Manifestation Meditation: http://bit.ly/2sBNCfz Read my article ‘Learning Through Illness – What M.E. Taught Me’ http://bit.ly/2rIjuuW

To help you keep on track This month’s Post-It Reminder: All is unfolding exactly as it should (Stick your Post-It reminders where you’ll easily catch sight of them: the fridge door; your computer; the mirror; the back of the loo door; the front door; your bedside table).

Practical Guidance Conscious Process: An MP3 audio programme to help manage the symptoms of M.E./Chronic Fatigue and Fibromyalgia and support recovery. Download the first 4 Sessions Free www.TheMeditationProgramme.com Visit my on-line store for relaxation, meditation and personal growth CDs and MP3s. Mindfulness, creative visualisation, positive thinking, sleep inducer, meditation courses, blog and articles www.AudioMeditation.co.uk Audio Meditation’s YouTube Channel Our Guided Meditation YouTube channel now has over 2 million views http://bit.ly/1X9gLER Facebook: http://bit.ly/1SvNOiL Twitter: http://bit.ly/1PPFkks Email: info@audiomeditation.co.uk

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Page twenty - Keeping Faith

Tie up your camel

SLEEP!

By Helen Watts Most fibromyalgia sufferers find their sleep is disturbed so I wondered what people did to help get to sleep or pass the time when sleep most definitely won’t come.

‘PD’ “I normally end up going to the bathroom and washing my face as If I don’t sleep it’s normally because I’m too hot. I go back to bed and end up reading a news app like the daily mail. Fall straight asleep after reading the first 3 articles”.

‘ALP’ “Read or toss, turn until I get so tired I can’t stay awake. I have painted my room before when I couldn’t sleep and moved my whole room around depends how awake I am”.

‘BF’ “if I can’t sleep I’ve been known to go for midnight strolls around the block, this morning where I hadn’t slept, I got up went to the local mills and took pictures of the sunrise and local area. Other times I’ll play games on my phone, or try to crochet. It’s hard as I’ve got children so can’t potter doing light housework in case I wake them”.

‘ ‘KB’ “I write my own and edit fanfiction for people”.

‘DW’ “I’ll read a book or use my iPad. Sometimes just too restless so get up, have warm drink and watch catch up tv. I often think I’ll do something productive but never do! I’ll drop off again in bed or sleep in my comfy chair until morning. Sometimes I use yoga breathing to relax and drift away”.

Page twenty-one - Sleep!

‘PJ’ I do a mixture of things - all the things specialists say you shouldn’t ie watch TV, play on my phone or chat on this group. The only way I fall asleep is to take my amitriptyline and play games on phone till I drop off.

I don’t care that drs say it’s the worst thing to do, it’s the only thing that works for me! I’ve tried reading and lying there but they don’t work”.

‘KSH’ I have a relaxation app and have soft headband with speakers, eventually I go back to sleep”.

‘SHB’ “I use essential oils in a defuser. It relaxes me”.

‘SIC’ “I get up, make hot drink and sit in lounge with ipad after taking some painkillers”.

‘GLH’ “I shop which is not good for my bank balance or watch YouTube”.

‘KH’ “I usually get up, make a horlicks or hot chocolate, take more painkillers and watch netflix”.

‘KR’ “I listen to the radio or if I really can’t sleep I’ll try and catch up on TV. Quite often if I get up and make a cup of tea that sends me off to sleep I don’t know why but tea does that to me”.

‘NM’ “I come on here, play games , read , listen to music or watch tv. I try not to snack”.

‘VS’ “I listen to audiobooks at night to help me relax and use sound meditation whilst listening to books, it takes some of the stress out of not sleeping and sometimes I doze off”.

‘MAH’ “I listen to music, sing along quietly while playing puzzle games on my phone. I’ve a blue light filter which means it won’t wake me up further. I also watch tv or read boring things online or a book. When that fails I try a bit of yoga or even start cleaning my room. Getting frustrated with insomnia only makes it worse for me.

I’m trying to tell myself that even if I can’t sleep, at least I’m in bed resting”.

‘PB’ “Depends on the night, how much pain I’m in, how frustrated I feel. Usually I get up for a bit, take extra meds if i have spare to take from the day, watch telly, move around, take hot shower, go back to bed, listen to guided hypnosis for sleep, podcasts, comedy, spotify anything to distract my mind, read my tablet”.

‘RH’ “One of the best things for me is to get cooler, sometimes I have a glass of water, other times I stand outside, even in the Cornish winter! I put on different trousers and a coat if its raining or in the summer I’m outside in just my pyjamas and dressing gown. Cooling down helps me sleep better when I go back to bed.

Some great tips here, why not come along to the Facebook groups and chat.

Helen Watts

‘NL’ “I youtube, science videos mostly till I fall asleep”.

https://www.facebook.com/groups/UKFibromyalgiaPrivate/

This month’s contributions came from our closed Facebook Page - why not try it yourself?

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

We aren’t pushing to spite our illness or you We can be our own worst enemies quite regularly when it comes to chronic illness of any kind, but add in a stubborn streak and we can make things a thousand times worse again. If you’re anything like me you know full well where your own limits are and how much you can take before the pay back becomes unbearable and yet you will still push through it until you are beyond your limits. However if a loved one, someone who really does have your best interests at heart ask us to pace ourselves or limit what we are doing it can trigger an even bigger rebellion.

Part of me has always been independent and headstrong; I have always preferred to be by myself most of the time and to do things my own way, in my own time.

Chronic illness makes that pretty much impossible now especially as it seems to be that my conditions are getting progressively worse, I now need to rely almost completely on others and that is something I loathe to do at the best of times and more so at my worst. At my worst I can accept the help I know full well I need though when I am at my best, on those rare occasions, the last thing I want is someone telling me to rest, to not push, to give in to my illness.

Recently a friend told me how his mum, who also has fibromyalgia and other chronic illnesses, will fight harder to push through the pain and discomfort even when the whole family is asking her to rest, to stop, is all done in spite of their worry. It isn’t in spite of their care or worry though, its love that makes them want to help limit the pain, limit the pay back and it’s this that makes those of us who fight through the pain do so for the same reason.

Our loved ones don’t want to see us in pain any more than we want them to. We aren’t fighting through and trying to remain an active part of our “normal” lives to spite anything other then our pain. We fight to keep our own sanity and happiness intact. While still so little is known about how likely deterioration is with conditions like fibro and M.E. and the like we have so much uncertainty about how our lives will play out in the future we need to push on in the present to make the most of it. Even if it’s something as silly and uneventful as washing a cup, drinking a cup of tea while sitting with family and enjoying their company we have to push through to make the most of these little things.

While simply putting a meal on the table for those we love may seem insignificant to most people, those who never have to worry that lifting a plate, or enjoying a meal with noise and people around you for those with chronic illness find it hard to manage this even now and again. When we do we want to make the most of it,

so please do offer to help but don’t try to take it from us. We aren’t trying to soldier through it all, we aren’t trying to be martyrs, we just want to have what relatively normal things we can have while we are able to do so.

It isn’t to spite others, or to spite ourselves either but simply to try to exist in a world that is scary and forever changing around us, a world that we have no guarantee from one moment to the next, let alone day to day, of how much we will be capable of. All we want is a little understanding an offer of assistance and not replacement. Ask what you can do to help, how we need you to ease the burden on us and what would make it much easier for us to limit the pay back. http://crackedbroken.blogspot.co.uk

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 ww

Foggy Moments We asked our Facebook group what’s the daftest thing you’ve done or said due to brain fog?

SG- Wore odd boots to an occupational health appointment were I was trying to convince the doctor that I was ready to go back to work after being off 18 months and he had previously recommended ill health retirement. I hadn’t realised till it was too late to go home and change! I had to try to hide one leg behind the other hoping he wouldn’t see! Still can’t believe I didn’t notice earlier - just grabbed two black boots- must have looked strange walking from the car park!

LH- I’m very close to my parents. They are my heroes. Unfortunately and horrifically my dad died in May this year. Anyway on the phone to my mum a couple of weeks ago she said she’d been up to the cemetery. Now I know he’s gone but waiting for the headstone etc. I meant to say how’s it all going there... Instead I come out with.’ Oh how dad? is he ok???’Not really she replies –‘ he’s still dead!’

Whoops silence. Luckily my mum also has fibro and we both burst out laughing.

AHW- I once left my car engine running for over an hour.I was sat in the living room and l was getting annoyed that some inconsiderate person was running his car outside my house, after an hour it was becoming a really nuisance so l threw my front door open and went out to challenge the idiot in the noisy car. I then sheepishly opened my car door (unlocked) retrieved my keys and try to pretend it hadn’t happened.

Page twenty-two - We aren’t pushing to spite our illness or you

By Naomi Harvey

Fibromyalgia – Does It Get Better?

by Cort Johnson

Page twenty-three - Fibromyalgia – Does It Get Better?

What can you expect if you have fibromyalgia? Do most people tend to get better or worse? Do people with FM ever recover and, if so, how many people do?

Several studies have examined the progression of fibromyalgia over time. Bearing in mind two things: (a) studies report tendencies which may or may not apply to any one individual, and (b) that studies may reflect the practices of the doctors in the areas the participants in the study derived from, and (c) the studies probably use doctors which do not incorporate many alternative methods into their practices; i,e, your results may vary.

With that let’s look at what the studies suggest about the average person’s future with fibromyalgia The most recent study – which took place in the U.S. – followed 76 FM patients from 20 sites in five regions (West, Midwest, South, Northeast) over two years.

The Study Fibromyalgia Outcomes Over Time: Results from a Prospective Observational Study in the United States. Caroline P. Schaefer,1 Edgar H. Adams,1 Margarita Udall,2 Elizabeth T. Masters,2 Rachael M. Mann,3 Shoshana R. Daniel,4 Heather J. McElroy,5 Joseph C. Cappelleri,6 Andrew G. Clair,2 Markay Hopps,2,* Roland Staud,7Philip Mease,8 and Stuart L. Silverman9 Open Rheumatol J. 2016; 10: 109–121.

The participants answered a variety of questionnaires (Brief Pain Inventory-Short Form (BPI-SF), modified (selfreport) American College of Rheumatology (ACR 2010) Criteria, Fibromyalgia Impact Questionnaire-revised (FIQ-R), Medical Outcomes Study Sleep Scale (MOS-SS), 12-Item Short-Form Health Survey, version 2 (SF-12), and Work Productivity and Activity Impairment (WPAI) Questionnaire).

The researchers also learned how many doctor, hospitalizations and emergency room visits were made and what prescription medications, physical treatments, nonprescription medications, and herbs, vitamins, or other pain supplements were taken over the last three months.

Results The fact that over 80% of the patients were on some sort of prescription pain-killer both at the beginning of the study and at the end spoke to the high pain levels people with FM typically experienced.

The people with FM in this study used more opioid drugs than any other kind of drug. (This is the mu-opioid receptor that opioid drugs lock onto.)

Opioids Stand Out – Despite the fact that three drugs have been FDA-approved for FM – none of which are opioids – opioid pain-killing drugs were easily the most used pharmaceutical drug with about 30% of the FM patients both at baseline and two years later using them.

A weaker opioid, tramadol, is often suggested for FM but more FM patients were on stronger opioids. Not only were more patients on strong opioids at baseline, the percentage of patients using strong opioid pain-killers actually increased over time. This, of course, indicates the important role these drugs play in pain management in FM – and speaks to the concerns several ME/CFS/FM doctors have that increasing restrictions on these drugs will leave some without a important means of help.

It also presents a worry as the chronic use of opioid drugs can actually increase pain sensitivity in some individuals. Paradoxically, some people with FM patients feel less pain after coming off opioid pain-killers.

NSAIDS were the next most commonly used drug and muscle relaxants were fourth. The fact that the use of both these drugs declined significantly over the two year span of the study suggested that many found them not particularly helpful.

FDA Approved Drugs Not So Popular – Antidepressants of the SSRI class (Citalopram (Celexa, Escitalopram (Lexapro), Fluoxetine (Prozac), Paroxetine (Paxil, Pexeva), Sertraline (Zoloft) were the third most used drugs, tramadol was the fourth and SNRI’s (Milnacipran (Savella), Duloexetine (Cymbalta) Venlafaxine (Effexor) were the fifth most used drugs. Anti-epileptics (presumably Pregabalin (Lyrica), Clonazepam (Klonopin) and Gabapentin (Neurontin) were the sixth most used drug.) Only about 15% of the FM patients used antiepileptics.

A drop in the use of herb, vitamins and other supplements from about thirty to about twenty percent of patients suggested that about a third of those trying them did not find them helpful either. On other hand about 2/3rds of FM patients using continued using them.

Meanwhile more FM patients (30-38%) began receiving physical therapy over time.

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

The fact that their employment status, household income, BMI, and number of disease comorbidities did not change indicated little movement was made in these issues.

There was some good news as well. In general FM patients reported statistically significant improvements in their symptoms (modified ACR 2010 Criteria) and how much pain interfered with their functioning (BPI-SF Pain Interference Index) and in their sleep (MOS-SS Overall Sleep Problems) were observed.

Not much progress has been made in the general medical community has been made in twenty years While improvements in pain were made, they were, however, relatively small with only about 15% of patients reported a more than 2 point improvement in pain. Plus even after the improvement pain levels were still very high and another pain indice did not show any improvement. One could come to the conclusion that many FM patients simply became better at functioning despite their pain. Most patients, however, remained quite functionally impaired.

This studies strength was its geographic spread; by following patients from 20 different clinics across five different regions it was able to get a good snapshot of general FM practice. It’s weakness was its relatively small sample size and relatively short duration. It was also impossible to tell which clinics were involved from the study.

Other studies, however, have come to similar conclusions.

A very large (n=1555) 2011 5-10 year observational study found that while about 25% of FM patients did experience moderate or substantial improvement in their pain about 35% got worse. In general the levels of symptoms remained high.

Another study suggested that things haven’t changed much in the last twenty years. Despite the advent of three FDA approved drugs for FM and presumably much improved doctor knowledge, a large 1997 7-10 year study came to a disturbingly similar conclusion: the degree of pain, fatigue, sleep problems, depression etc. were all essentially unchanged over time.

It should be noted that several studies show that remissions from fibromyalgia can occur. Full recovery is rare but you can find FM/ME/CFS Recovery Stories on Health Rising and other sites.

ME/CFS/FM Recovery/Recovering Stories Because the studies examined whether or not patients met the criteria for FM, not whether they recovered or not, recovery rates from FM were not reported. However, the small percentage of patients reporting substantial improvements from pain suggests that recoveries are rare

There are several proviso’s to these studies. It’s not clear if the practitioners in any of these studies were using low dose naltrexone LDN or tracking medical marijuana: two alternative treatments probably not available in many doctor’s practices. Given the low number of FM specialists available we can probably conclude that they were not included in the surveys either. It’s possible that FM patients seeing practitioners who use a multidimensional approach that incorporates alternative health practices into their treatment regimens do better as well. Studies to determine whether FM specialists or alternative health MD’s are more effecting at treating FM are vitally needed.

In general, though, these studies suggest that the most FM patients seeing general practitioners or rheumatologists can hope for are modest improvement in pain and sleep. Much, obviously remains to be done.

Some treatments may be on the way. An improved form of Lyrica is in Phase III trials and Dr. Pridgen is raising money to fund his phase III antiviral trial.

High Burden of Illness – Low Funding Continues to Plague Fibromyalgia Recent studies indicate that fibromyalgia places a high burden of illness both on the patient and their family, and on society. At about 50 cents a year, funding per fibromyalgia patient is, however, amongst the lowest at the NIH. Despite FM’s high prevalence and the high illness burden it imposes on patients and on society the biggest research funder in the world – the National Institutes of Health (NIH) is still clearly disinclined to study it.

Without more study, however, it’s unclear how FM patient’s lives are going to improve. It’s possible that better treatments could come from advances in our understanding of pain in general but that’s uncertain.

Determining exactly how the pain and other symptoms in FM are generated and creating treatments to tackle them is the best solution.

That’s probably not going to happen for a long time with the funding FM currently gets. The FM community has the numbers; if it can translate those numbers into effective advocacy it can go far. Given FM’s past history at the NIH (its funding has actually dropped substantially), unfortunately, there’s no reason to expect anything to change absent a strong push from the patient community. https://www.healthrising.org

The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

Page twenty-four - Exercise has given me my life back

Little Progress in Twenty Years

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Send to: 7 Ashbourne Rd, Bournemouth, BH5 2JS Tel 01202 259155 Email:office@UKFibromyalgia.com Jennifer Carter Hailsham, East Sussex- 01323 848590 - 7 days a week Ms Gill Galyer Newark, Notts - Ring between 11am and 4 pm Monday to Friday 01636 526160 Bede Francis Thomas West London - 020 8840 7759 -Not mornings Mrs Viv Norrie Angus & Mearns Fibromyalgia Support Network (Montrose, Scotland)

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Tel 07912 792250 Any day 11am-6pm shelbyeatenton@hotmail.com Linda Holder Luton, Bedfordshire - 01582 570240. Phone chats or meetings phone in the afternoon.

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meetings/social lunches 01243 670 783 any pm or evenings Denise Shotter Guildford and Bordon monthly meetings 08448872358 5-7pm email denise.guildfordfibro@yahoo.co.uk Diane Jaques Burnley, Lancashire - 01282 701390 after 7.30pm Mon-Fri if you would like to chat Diane Leak Darlington Friendship Group - 1st Wednesday of the month

12pm-2pm. Upstairs CafĂŠ of the Darlington Dolphin Centre.

Mrs Jane Wallace Bursledon Hampshire Contact number: 08448872409 Email: bursledonfibrofriends@gmail.com Mrs Natalie Hicks Chorley Fibromyalgia Support, Lancashire - Contact number: 01257 275145

Please leave a message if no answer. Email: nataliehix@gmail.com West Kent Fibromyalgia in Tonbridge Support Group meet in TN10 bi-monthly.

Tel: 0844 887 2429. Email: fibromyalgia.tonbridge@hotmail.com E.L.F.S Edinburgh & Lothian 0844 887 2380 Deb Cooke Swindon and Salisbury Foggy’s 0844 887 2377 Gary Yates FM/ME/CFS Support & Carers Group based in Milford Haven Mob: 07867 482 929

Tel: 01646 694 521 E-mail: fibrowestwales@hotmail.com Paul Peccioli Happy to take calls from anywhere .I assist in PIP & Blue Badge Form Filling dealing with

local District Councils and DWP problems. A listening ear and support and am able to aid Daventry FM Group

those with a variety of other problematic areas. I take calls from 08:00hrs till 21:00hrs

7 days a week. 0844 887 2591 The Fibromyalgia Magazine. Year 17 Issue 11 September 2017 www.ukfibromyalgia.com

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