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Flare Mag Issue 31 May 2017

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Charity Registration No 1170884 ISSN 2398 0141 online May 2017 Issue 31 4 50 when sold Circulation 3 940 Beth Urmston fibroflaremag1 outlook com INSIDE THIS MONTHS ISSUE 400 Years of Fibromyalgia International Fibromyalgia Awareness 12 May 2017 Meet the Trustees Look out for the Freebie Giveaway FLARE MAGAZINE BETH URMSTON 2016

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Aims of the Magazine An aid to those who have been diagnosed with Fibromyalgia FM Chronic Fatigue Syndrome CFS and Myalgic Encephalopathy ME who need support and guidance to help them come to terms with their lifelong debilitating condition To help their families friends colleagues etc to understand and be able to offer their own level of support As a tool to assist the medical profession when dealing with patients who have presented regularly over a 6 month period or more with unexplained pains which could be FM or those who have already been diagnosed As an outlet for FMCFS ME sufferers to share their experiences A way to raise awareness and educate the general public of the many symptoms and issues that make up these similar but different conditions To work toward fundraising for research we all want the same thing A CURE PUBLISHER S STATEMENT Fibro Flare is published by B Urmston in Warrington WA1 2ET UK FIBRO FLARE MAGAZINE BETH URMSTON 2015 fibroflaremag1 outlook com Charity Registration No 1170884 2

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Thank You Thank you to everyone who has contributed to this months magazine Contributors Elyse Runacre Features Editor Sara Louise Williams Graphic Design Ailsa Bancroft Arts Crafts Beverley Barnett Copy Editor Plus Guest contributions To all our regular contributors our wonderful readers and everyone who has done anything to raise awareness in whatever way they were able this month and especially to those who donated 3

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Contents Aims of the magazine 2 Exercising with Chronic Illness 36 Thank You 3 Member Offer N rem sleep system 40 Message from the Editor 5 Arts and Craft with Ailsa 42 Meet The Trustees 6 Going Bananas 45 Recipes 7 Dr Ginevra Liptan 46 Online Shop 9 Animal Magic Kelli Ellis 47 The History of Fibromyalgia 10 NHS Making a Complaint 48 Families are effected by our illness too 16 Current Research Trials in UK USA 50 Fibromyalgia Vs Work 51 Mental Health Anxiety 18 Shopping Online with Easy Fundraiser 19 Fibro Community Alternative Therapies 21 Fibro Flare Online Shop 53 Treat Yourself Jamberry 23 Disabled View UK 54 Our Fibromyalgia Story So Far 24 Groups 56 Help Raise ME Awareness 31 Important Notice 57 PACE Trial Latest 32 Disclaimer 58 Craft Corner 34 52 4

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Message from The Editor Hi My message this month is very simple International Fibromyalgia Awareness Day 12 May 2017 Once a year we get a great opportunity to raise the profile of fibromyalgia ME We all want people to be more aware we ve learned no one else is going to do it for us we have to do it One day that could help change the rest of your life What you can do Join the Awareness Group and get involved Watch for suggestions on the Fibro Flare Magazine Group Post meme s pics of good days and bad days etc on Facebook turn it Purple or Blue if your predominant condition is M E Wear a ribbon hand a leaflet to a friend a colleague a stranger Ribbons and leaflets are available via our online shop http fibro flare shop myshopwired com AWARENESS STARTS WITH YOU Beth X fibroflaremag1 outlook com www flaremag co uk 5

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Meet the Trustees Chair Beth Urmston Sian Phillips Julie Britten Sara Louise Williams Cath Farrer Sarah Blackburn We are committed to doing everything we are able to raise awareness and funds for bio medical research We are currently in discussion with a couple more members with a view to them joining the team We are growing and as we grow we will need more people on board We will be looking for more people who have fibro but also non fibro s Our meetings take place via Skype as we all live in various parts of the country Our accounts are available to anyone who would like to see them and are also submitted to the Charities Commission annually We still need members on board to help us achieve our aims help us raise more awareness together we can make a difference 6

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Recipes By Beth Urmston Why not make these lush butterfly cakes have a cake sale or just hand them out to neighbours with a leaflet about Fibromyalgia http www icedgembakes co uk gluten free and dairy free baking recipes butterfly cupcakes Butterfly Cupcakes serves 10 Ingredients 200g unrefined caster sugar 200g butter or margarine at room temperature 4 eggs 100g gluten free plain flour 50g maize flour or cornflour 50g ground almonds 1 tsp gluten free baking powder Buttercream 100g butter at room temperature 200g icing sugar Couple of drops vanilla extract or other flavouring Method Fill a muffin tray with 10 muffin cases Preheat oven to 190 c 375 f gas mark 5 Combine the gluten free flour maize flour ground almonds and gluten free baking powder Sieve together 4 times to combine Cream together the caster sugar and butter until light and fluffy It is best to do this using a food mixer with a beater attachment or use a hand held electric mixer Crack the eggs into a bowl and beat lightly with a fork Beat the egg into the creamed mixture a bit at a time making sure to beat in each addition properly before adding the next If the mixture starts to split mix in a spoonful of the flour Add the vanilla If using a food mixture mix in the flour on the lowest speed setting If not then fold the flour in with a spoon Divide the mixture equally between the 10 cases and bake for 18 20 minutes until firm to touch and a knife inserted comes out clean These will rise above the top of the case Leave on a cooling wire until completely cold before finishing Buttercream Beat the butter to soften using your food mixer Add the icing sugar and mix into the butter slowly Add the vanilla Once the icing sugar is mixed into the butter increase the speed and beat until light and fluffy Add a drop of milk if the buttercream is too firm Use straight away or place into a container with a lid and store in the fridge You may need to rebeat the buttercream before using again or bring to room temperature Carve the tops off the sponge with a sharp knife and cut the top in half to make the wings Spoon a tiny amount of jam into the centre of the cake Pipe a swirl of buttercream on top Stick the wings into the buttercream and dredge the top with icing sugar 7

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How to make this recipe dairy free Use dairy free margarine in place of butter in the butterfly cakes Use dairy free margarine in place of butter in the buttercream 100g dairy free margarine 400g icing sugar Couple of drops vanilla extract or other flavouring Mix the icing sugar and vanilla into the dairy free margarine Do not overbeat the mixture as it will split Stir in a few drops of water until it reaches the required consistency You may think this is a lot of icing sugar If you use less icing sugar to margarine the mixture will split Add a little extra flavouring to this buttercream Gem s hints and tips In all recipes requiring self raising gluten free flour I advise sieving the flours together with the gluten free baking powder four times to make sure all the ingredients are evenly distributed If you have made a cake that is really heavy with a solid lump of eggy mixture at the bottom one reason could be because the baking powder wasn t mixed into the flour properly If you can t find maize flour then cornflour is easily available and makes a good substitute There isn t much difference but I do prefer maize flour See resources Gluten free cakes are best eaten fresh they will keep well for a week They can be frozen but the texture goes a bit grainy when defrosted Gluten free cakes are crumblier than other cakes but taste just as good To cut neat slices dip a sharp knife in hot water and wipe clean between slices The wings of the butterfly cakes will dry out if made too far in advance N B The sponges will get soggy if stored in a tupperware container 8

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Check out our Online Store and order leaflets ribbons etc www fibro flareshop myshopwired com 9

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THE HISTORY OF FIBROMYALGIA IT S HORRIBLE http healthcareguide co the history of fibromyalgia its horrible Important Developments of More than 400 Years by Adrienne Dellwood You sometimes hear fibromyalgia referred to as a fad diagnosis or new disease but the truth is that fibromyalgia is far from new It has centuries of history with multiple name changes and discarded theories along the way While it hasn t always been accepted by the medical community and today its acceptance isn t universal fibromyalgia has come a long way and current research continues to offer proof that it s a very real physiological illness The most often cited historical account of fibromyalgia comes from a 2004 paper by researchers Fatma Inanici and Muhammad B Yunus This history was compiled from their work as well as new information from the past decade All sources are cited at the end of the article Back to the Beginning 1592 1900 Early on doctors didn t have separate definitions for all the pain conditions we recognize today Descriptions and terminology started out broad and gradually were narrowed down In 1592 French physician Guillaume de Baillou introduced the term rheumatism to describe musculoskeletal pain that didn t originate from injury This was a broad term that would have included fibromyalgia as well as arthritis and many other illnesses Eventually doctors began to use muscular rheumatism for painful conditions that like fibromyalgia didn t cause deformity Two hundred years later definitions still were rather vague However in 1815 Scottish surgeon William Balfour noted nodules on connective tissues and theorized that inflammation could be behind both the nodules and pain He was also the first to describe tender points which would later be used to diagnose fibromyalgia A few decades later French doctor Francios Valleix used the term neuralgia to describe what he believed was referred pain from tender points traveling along the nerves Other theories of the day included hyperactive nerve endings or problems with the muscles themselves In 1880 American neurologist George William Beard coined the terms neurasthenia and myelasthenia to describe widespread pain along with fatigue and psychological disturbance He believed the condition was caused by stress 10

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1900 1975 The creation of more specific terminology really exploded in the early 20th century Different names for fibromyalgia like illness included Myogeloses Muscle hardening Fibrositis Fibrositis coined in 1904 by British neurologist Sir William Gowers is the one that stuck The symptoms Gowers mentioned will look familiar to those with fibromyalgia Spontaneous pain Sensitivity to pressure Fatigue Sleep disturbances Sensitivity to cold Aggravation of symptoms by muscle over use As a treatment he suggested cocaine injections as cocaine was then used medicinally as a topical anaesthetic Medically fibro means connective tissue and itis means inflammation Soon after Gowers put forth the name another researcher published a study seeming to confirm many of Gowers theories about the mechanisms of inflammation in the condition This helped cement the term fibrositis in the vernacular Ironically this other research was later found to be faulty In the 1930s interest heightened in muscle pain referred from tender trigger points and charts of these patterns began to appear Local injections of anaesthetic continued to be a suggested treatment Fibrositis wasn t a rare diagnosis back then A 1936 paper stated the fibrositis was the most common form of severe chronic rheumatism It also said that in Britain it accounted for 60 percent of insurance cases for rheumatic disease Also in that era the concept of referred muscle pain was proven via research A study on pain pathways mentioned deep pain and hyperalgesia a heightened pain response and may have been the first to suggest that the central nervous system was involved in the condition Additionally a paper on trigger points and referred pain put forth the term myofascial pain syndromes for localized pain Researchers suggested that the widespread pain of fibrositis may come from one person having multiple cases of myofascial pain syndrome World War II brought a renewed focus when doctors realized that soldiers were especially likely to have fibrositis Because they didn t show signs of inflammation or physical degeneration and symptoms appeared linked to stress and depression researchers labelled it psychogenic rheumatism A 1937 study suggested that fibrositis was a chronic psychoneurotic state Thus the on going debate between physical and psychological was born 11

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Fibrositis continued to gain acceptance even though doctors couldn t agree on exactly what it was In 1949 a chapter on the condition appeared in a well regarded rheumatology text book called Arthritis and Allied Conditions It read T here can no longer be any doubt concerning the existence of such a condition It mentioned several possible causes including Infection Traumatic or occupational Weather factors Psychological disturbance Still descriptions were vague mish mashes that we now recognize as including several very different types of pain conditions They generally involved fatigue headaches and psychological distress but poor sleep wasn t mentioned The first description of fibrositis that resembles what we recognize today as fibromyalgia came in 1968 Researcher Eugene F Traut s paper mentioned Female predominance Generalized aching and stiffness Fatigue Headaches Colitis Poor Sleep Being worry worts Tender points discovered by physical exam An important mind body connection 12

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Along with generalized pain he recognized certain regional ones that appeared to be common including what we now know as carpal tunnel syndrome He mentioned various levels of the spinal axis which you may recognize from modern diagnostic criteria pain in the axial skeleton bones of the head throat chest and spine and in all four quadrants of the body Four years later though researcher Hugh A Smythe penned a textbook chapter on fibrositis that had a far reaching influence on future studies and lead to his being called the grandfather of modern fibromyalgia He s believed to be the first to describe it exclusively as a widespread condition thus distinguishing it from myofascial pain syndrome Smythe not only included poor sleep in the description but described what sleep was like for patients and also provided unpublished electroencephalogram sleep study findings that showed dysfunction in stage 3 and stage 4 sleep Further he stated that non restorative sleep trauma and emotional distress all could lead to heightened symptoms Subsequent research confirmed sleep abnormalities as well as showing that sleep deprivation can lead to fibromyalgia like symptoms in healthy people Smythe then was involved in a study that better defined tender points and suggested their use in diagnosis It also listed chronic pain disturbed sleep morning stiffness and fatigue as symptoms that could help diagnose the condition 1976 Present While researchers had made some good progress they still hadn t uncovered evidence of inflammation the itis in fibrositis The name was then changed to fibromyalgia fibro meaning connective tissues my meaning muscle and algia meaning pain Still a lot of questions remained The primary symptoms were vague and common in the population Doctors still didn t have a handle on what fibromyalgia was Then a seminal study lead by Muhammed Yunus came out in 1981 It confirmed that pain fatigue and poor sleep were significantly more common in people with fibromyalgia than in healthy control subjects that the number of tender points was significantly greater and that multiple other symptoms were significantly more common as well These additional symptoms included Subjective swelling Paraesthesia abnormal nerve sensations Overlapping conditions such as irritable bowel syndrome IBS tension headaches and migraines This paper established enough of a consistent symptom cluster to officially denote fibromyalgia a syndrome as well as the first criteria proven to differentiate those with fibromyalgia from others A wealth of research has since confirmed that these symptoms and overlapping conditions are in fact associated with fibromyalgia 13

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Yunus then led research cementing the idea of several overlapping conditions including primary dysmenorrhea painful period along with IBS tension headache and migraine He then believed the unifying feature was muscle spasms but that suggesting would later give way to the theory of central sensitization Since this point we ve had a tremendous amount of research published and progress made We still don t have all the answers but we ve gained a much better understanding of what may be going on in our bodies Important advances include 1984 First study published linking higher fibromyalgia prevalence in those with rheumatoid arthritis 1985 First controlled study of juvenile fibromyalgia was published 1986 Drugs influencing serotonin and norepinephrine were first shown to be effective 1990 American College of Rheumatology establishes official diagnostic criteria of widespread pain and tenderness in at least 11 of 18 specific tender points thus standardizing research inclusion criteria around the world 1991 Fibromyalgia Impact Questionnaire developed for doctors to evaluate function 1992 Discovery of low growth hormone levels 1993 Studies demonstrate central sensitization and HPA axis stress regulation abnormalities 1994 Confirmation of elevated substance P pain messenger in cerebrospinal fluid 1995 First U S prevalence study shows fibromyalgia in 2 of the population 1995 First SPECT brain imaging showing abnormal blood flow patterns in the brain 1999 First study demonstrating genetic component to explain why it runs in families 2000 Review of evidence coins the term central sensitization syndromes 2005 American Pain Society releases first guidelines for treating fibromyalgia pain 2007 Lyrica pregabalin becomes first FDA approved treatment in the U S Cymbalta duloxetine and Savella milnacipran followed in 2008 and 2009 respectively 2010 American College of Rheumatology releases alternate diagnostic criteria using questionnaires instead of tender points Research has continued to shore up these findings as well as suggest new possible causal factors and mechanisms As of early 2014 some lines of inquiry include Inflammation of the fascia Some research has suggested that the widespread pain of fibromyalgia may indeed be inflammatory but in the extremely thin body wide web of connective tissue called fascia Extra nerves on blood vessels A much publicized study shows extra temperature and pain sensing nerves in the circulatory system Small fibre neuropathy Emerging research is showing that certain specialized nerves may be damaged Immune System Abnormalities Some lines of research are showing abnormal activity in the immune system that may suggest chronic immune system activation or autoimmunity One study suggests an autoimmune reaction to serotonin Another proposes a possible diagnostic test based on an immune profile 14

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Several researchers also are working to establish subgroups of fibromyalgia believing that it s the key to nailing down the underlying mechanisms and best treatments More treatments are always under investigation and a major goal has long been identifying and establishing objective diagnostic tools such as a blood test or scan Fibromyalgia still has not found universal acceptance in the medical community but it s closer than ever As research continues to demonstrate that it s both real and physiological this condition gains credibility and those of us with it gain understanding respect and most importantly better treatment options so that we can reclaim our futures Sources Albrecht PJ et al Pain medicine 2013 Jun 14 6 895 915 Excessive peptidergic sensory innervation of cutaneous arteriole venule shunts AVS in the palmar glabrous skin of fibromyalgia patients implications for widespread deep tissue pain and fatigue Behm FG et al BMC clinical pathology 2012 Dec 17 12 25 Unique immunologic patterns in fibromyalgia Caro XJ Winter ER Arthritis rheumatology 2014 Apr 9 Epub ahead of print Evidence of abnormal epidermal nerve fibre density in fibromyalgia Clinical and immunologic implications Caro XJ Winter ER Dumas AJ Rheumatology 2008 Feb 47 2 208 11 A subset of fibromyalgia patients have findings suggestive of chronic inflammatory demyelinating polyneuropathy and appear to respond to IVIg Inanici F Yunus MB Current pain and headache reports 2004 Oct 8 5 369 78 History of fibromyalgia past to present Oaklander AL et al Pain 2013 Nov 154 11 2310 6 Objective evidence that small fibre polyneuropathy underlies some illnesses currently labelled as fibromyalgia Smith HS Harris R Clauw D Pain physician 2011 Mar Apr 14 2 E217 45 Fibromyalgia an afferent processing disorder leading to a complex pain generalized syndrome Uceyler N et al Brain a journal of neurology 2013 Jun 136 Pt 6 1857 67 Small fibre pathology in patients with fibromyalgia syndrome 15

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Fibromyalgia ME CF Families are affected too By Beth Urmston I am going to try and put myself in others shoes I apologise if I don t do this full justice I apologise if anyone thinks I am trying to be offensive I m really not As patients with FM ME CF we very often feel frustrated and even angry that we plan to do something we look forward we get excited only for our illness to pull the rug from under us We feel bad that we can t just go and do a planned event we feel bad that we let others down but we understand and accept that as part of the deal for us We continue to make plans some we will get to keep some we won t For a healthy family member their plans are often disrupted their bodies don t stop them their minds don t stop them our condition stops them Is it unacceptable for them to become frustrated and angry Does it mean they don t understand Does it mean they aren t caring and compassionate or does it simply mean they are human Living with a chronic condition is extremely hard but is it any easier for those living with someone with a chronic condition Maybe they do get to go to work school etc and have some outside contact but for the most part their heads are down doing what they are there for it s not exactly a social activity And then lucky souls that they are they come home maybe have to prepare and cook the evening meal spend time with young children sort the laundry tidy clean the house juggle the finances on one salary etc etc Weekends are for catching up on the chores that didn t quite get done during the week and the shopping has to be done Sound tiring put yourself in their shoes How much energy do you think they have left Sometimes instead of getting niggled about something not done maybe think about how they are feeling they don t have a chronic condition but their lives are impacted by it They watch the suffering remember when the baby was teething you had done everything you could possibly do and still the baby was in pain Were you frustrated Did you feel incompetent Would you have taken their pain if it was at all possible If it was your partner who had the condition how do you think you would feel after weeks months years It s not your fault it s not theirs either But they are there for you They have stayed They are doing the best they can Maybe we need to consider cutting them some slack when they get frustrated that yet another social activity is being cancelled because you simply aren t able to make it They are allowed to be equally disappointed They are allowed to get tired frustrated and angry They are human But they are there 16

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It will soon be National Carer s Week 12 18 June 2017 Why not show tell your carer how much they are appreciated for all they give to help make your life better A few words a meme posted on Facebook a little note will show you do appreciate everything they try to do for you And next time you re feeling a little niggled maybe take a walk in their shoes 17

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Fibromyalgia Vs Work By Jeanette Potter I was diagnosed with fibromyalgia in 2013 Since September 2015 I have been self employed as an administrator My duties at the surgeries include checking patient notes in summarising patient records which are then entered onto the surgery system so when the Doctor sees a patient the patient s full medical history is on the system for the Dr to view I normally work between 8 12 hours each week It takes me between 5 20 minutes drive to get to the different surgeries They have been supportive understanding if I say I am unable to come in due to having a flare up there is no pressure put on me I did work for another surgery that was less understanding and so I chose not to work for them I also do admin for my husband s business where I do the book keeping send estimates invoices and do the banking Thankfully I can do this at home I get back pain if I sit too long so I get up from my desk every 40 50 minutes and file the paper records Using the keyboard can cause wrist and hand pain I wear compression gloves or splints to help ease the symptoms If I am at work and get overwhelmed by fatigue I explain the situation and go home I only invoice for the hours I work The work for my husband can be done at any time sometimes I do the books at night when I am unable to sleep due to the fibro Thankfully the work I do isn t very stressful One of the best things about being self employed is that I can choose my own hours The people that I work for understand fibromyalgia and allow me to work flexi hours I have up to 10 weeks off a year When I was thinking about going self employed I worked out how much money I needed to earn a year worked out how much sick leave I had taken over the previous year and then added 6 weeks annual leave divided the figure I needed to earn by 42 then by 8 so that gave me my hourly rate About 18 months ago I was forced to take a month off due to a major flare up I was really struggling to get things back under control the surgeries were very understanding As I only invoice for the hours that I have worked I don t feel too bad when I have to take time off If I needed to I could give up totally but I like the independence working gives me My job is fairly stress free where I can choose the hours I want and take annual leave when I want so I wouldn t consider returning to being an employee Sometimes in the mornings I m in so much pain that I use the hot tub to provide pain relief Which allows me to then go to work Flexi hours are invaluable So long as I let my manager know what is going on ie starting work at 10 am instead of 8 am This reduces the pressure of having to be at my desk by 8 in pain and this in turn reduces my anxiety Interviewed by Elyse Runacre 18

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Mental Health Anxiety By Beth Urmston When You re Too Functional to Have Your Mental Illness Taken Seriously By Karen Lowinger The Mighty I ve read countless articles many on The Mighty about the struggle of having an invisible illness and the way other people judge the validity of people s conditions I ve also read about people who aren t taken seriously when they express their most intimate dark thoughts to family professionals and friends I m a psychologist Not too long ago I was reunited with many other mental health workers psychologists psychiatrists researchers and professors were in attendance The event was a presentation of a type of therapy and when the speaker began talking he asked us how mental illness affects a person Someone answered a person with a mental illness has difficulties and struggles with certain areas of his life Another person answered that the mentally ill suffer greatly And then a third person said mentally ill people don t function in society I was waiting for someone to refute this but instead everyone nodded and the speaker actually agreed and said very good My heart was beating really fast It was partly because I didn t know these people very well and I was struggling a bit with social anxiety I hadn t contemplated speaking up But my heart was also beating fast because I was angry That statement and the fact it wasn t even questioned is exactly the reason why high functioning people with mental illnesses are sometimes not taken seriously I can be dying inside while going through the motions of the day It s not difficult for me to know how others expect me to act Acting fine is a cognitive process You can probably mention right now how an emotionally stable or mentally sane person is supposed to act It really is simple A generally accepted lifestyle is one where a person wakes up every day looks presentable takes care of stuff that needs to be taken care of eats and goes to sleep This can sometimes be done regardless of how you feel inside To say it s difficult is an understatement but it s not impossible These high functioning people don t do it because they want to fool others they do it because they want to produce and be a part of society They try so hard to beat their illnesses or disorders They don t want to rely on others to take care of them So when a high functioning person asks for help or admits to himself and to someone else his struggles it takes a lot of bravery These people have worked every single day to build a normal world for themselves are terrified of admitting mental illness and when they finally do and are met with rejection little understanding and no empathy from a mental health worker it is devastating 19

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My compromise with my career is very clear to me but I have to admit I have been blessed and cursed to see this because I myself struggle with my own disorders If you struggle with not being taken seriously my advice to you is to trust you know yourself so much more than anybody else Nobody has the right to undermine your difficulties If they do it s their issue Keep looking for the person who listens to you and takes your feelings into account Don t feel demoralized or flawed I know it s a tough pill to swallow when you ask for help from a mental health worker who should be able to understand you but doesn t Again this is a flaw in their own understanding of the human mind By the way yes I did speak up With a bit of a red face I refuted what they all agreed to and told them it s a terrible mistake to discard the presence of a mental disorder in relation to the functionality of a person I added functionality is sometimes a symptom depending on the illness and the person The speaker didn t know what to answer so he agreed and moved on 20

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Helping Ourselves Alternative Therapies Members are always looking for alternatives or something to supplement their medication to alleviate the pain of fibromyalgia Below are the more common therapies used that have been found to help As always some work better than others because as we have all learned we are all different Most of the following are not available on the NHS and have to be paid for privately but don t be put off looking and giving consideration to any all of these LDN Naltrexone in low dosage LDN is an opiate blocker and most definitely not an opiate It is not illegal and is a licensed medication purchased via a pharmacy For more information check out the charity website and Facebook page There are thousands of video testimonials and they have a weekly radio show Facebook 18 000 members https www facebook com groups LDNRT ref br_tf Website http www ldnresearchtrust org CBD Oil Cannabinoid Oil CBD is not illegal in the UK but is in other countries It has recently been licensed as a medicine in the UK For more information check out what the users say Facebook 10 000 members https www facebook com groups CBDusersUK Hyperbaric Oxygen Therapy HBOT This is proving to be extremely beneficial to some fibro patients and has good research results in many countries It s not as expensive as you may think For more information and to find a centre near you check out https www hyperbaricoxygentherapy org uk faq https www hyperbaricoxygentherapy org uk find chamber 21

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Golden Paste GP made at home with organic turmeric coconut oil and black pepper Great for inflammation Works for humans and animals so if you have a pet this is definitely worth looking into For more information and user comments Facebook 220 000 members https www facebook com groups 415313751866609 Panic Attacks and Anxiety Panic Away Join up and get free help https www panicaway com Magnesium To understand the use and helpfulness of this supplement check out the You Tube link or type in Dr Carolyn Dean Dr Mercola Magnesium and you will find lots more information https www youtube com watch v d55y4yOnn3c t 26s 22

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Treat Yourself By Sally Sugden I was introduced to jamberry the evening before they were launched in the UK and my first thought was wow these are going to be great for people like me Like most fibro folk I can t sit for long periods being titivated Also I find it hurts to hold the brush to paint my nails and then it s even harder to not smudge them These have really made a difference to me I can do as many nails as I need and then take a break No drying time no smudging no faff I know that at 15 people might think these are expensive but at 3 75 per manicure you get 7 pedi s per sheet if you can reach your toes I can t Or 5 manicures or 2 mani s and 2 pedi s they work out quite cost effective I think They last up to 2 weeks on fingers and 6 on toes although I ve had some last 8 weeks on my toes For me jamberry equals less money less pain and less stress I wouldn t be without mine These are just a tiny selection of what is available I am donating all commission gained through sales from Fibro Flare magazine to the group to use as they see fit in campaigning for a greater understanding of the illness To see more take a look at https sallyjax jamberry com uk en I have free samples if anybody would like to try them 23

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Our fibromyalgia journey so far By Leeann Marie Lakin My name is Leeann Marie Lakin I am 29 years old and was diagnosed with fibromyalgia 2 years ago after suffering with the symptoms from the age of 17 when on my moped I was the victim of a hit and run with a car Quite shortly afterwards my mum and 3 sisters soon followed suit with the same diagnosis my older sister Sara who has suffered since 18 and was only diagnosed last year at the age of 31 My youngest sister Adrienne who I am co working on the campaign with was diagnosed at the beginning of last year and has recently been made redundant due to the illness and I have been signed off of work since February 15th 2016 when I was hospitalised with the illness My other younger sister Emma Jane is awaiting a full diagnosis in Stafford I have 2 beautiful daughters who I now struggle to keep up with but without my princess s I don t think I could cope My fianc Kriss is my rock Without him I wouldn t be able to manage my day to day life We have known each other since nursery and only got together 7 years ago He is an amazing father partner and step daddy to our eldest daughter For that I love you so much forever and always With the stress of trying to cope and taking over everything it s made him ill On top of a full time job helping with the kids and housework he s completely drained himself I feel so guilty that this has happened to us as if somehow it s my fault I can t count the amount of times I ve told him to walk away that he deserves more than a lifetime of looking after me He always says to not be stupid he s here because he loves me Anyone who knows us as a couple are obviously used to us yet to the outside world a general conversation to us can seem like a full blown argument to others Our families have been so supportive especially Kriss s mum and auntie without them our wedding wouldn t be going ahead Even my dad and step mum are trying to move closer to help me with the girls while Kriss is at work to get them to school and to appointments as neither me nor Kriss drive Some people say I am lucky enough to live next door to my mum I think that too but obviously with her having the same condition amongst other problems we don t actually really see each other unless we need to talk Before I was diagnosed the amount of research I did into the condition made my head spin With assistance from friends who have the condition and my family I built up the courage to talk to my GP about it I am so glad I started talking to Andy and Danielle about how I was feeling over 2 years ago otherwise I wouldn t be where I am today without them They run the wrestling company in Sheffield which Kriss goes to Elite British Wrestling and our wrestling family to be honest as that s what each and every one of them has become over time I can only thank them so so much because my normal family wouldn t have got an answer to what we were going through 24

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My GP at the time and who we will continue to work with Dr Peter Scriven saw all of us at some point or another during his time at our practice I was already seeing him in regards to depression but when I mentioned fibromyalgia I was in for a surprise as he had an interest in the condition and a very open mind to help Blood tests musculoskeletal appointments and over the next few months different medications were introduced it wasn t until pramipexole was introduced I felt normal again before I was prescribed the medication I had to again research for a month thanks Dr Scriven before I was even allowed to start taking the medicine as GPs are not obligated to prescribe it This diagnosis finally explained a lot of why nothing would ease the aches and pains all over my body anxiety depression headaches restless legs chronic fatigue irritable bowel occasionally blacking out from the insomnia finally catching up with me and so many others the list could go on Within time Adrienne was diagnosed she s 25 this year Adrienne pretty much has the same symptoms and medication as I do through this and with the petition we ve grown a lot closer Me and Kriss i was pregnant with our youngest daughter here She s 4 this august Adrienne and her partner Michael He has been brilliant helping her We both have had our homes adapted with extra grab rails toilet rails bath boards etc the usual stuff you need when your body doesn t work the way you want it to I was even to the point where I had to have a care line fitted which is a service our local council provides because I was so petrified of being in the house on my own with the children in case I blacked out again 25

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We both use walking aids as our legs easily give way and we find it difficult to get out and about unless a friend or family member is with us Unfortunately now though Dr Scriven has left our practice and not very many GPs have the knowledge or actually believe in the condition to deal with it Adrienne came up with the idea to petition parliament after Dr Scriven announced his departure in December 2016 needless to say we we re all devastated as he was the first to actually listen A lot of the practices patients have got in touch with us to say they support us via emails and social media across all platforms The petition calls for a change in the Equality Act 2010 to move fibromyalgia out of the impairments list to Section Schedule One of the Act This is also to educate the community and medical profession who perhaps need to know about the illness better raise awareness raise money and help fellow sufferers get the treatment and recognition they deserve She compiled all the research and it was all launched at the beginning of February 2017 Adrienne asked me to jump on board on the 24th of February to help as within a few weeks of the petition launching it went global Reaching from Canada America Denmark across the UK and all the way to Australia She had already contacted our local MP Toby Perkins by this point and had already set up a meeting with him Within a week of me joining Adrienne on the petition and Facebook campaign the number of signatures rocketed from around 4 000 to just over 7 000 The numbers slowly continued to grow as Adrienne took charge of arranging interviews I was quite happy to set up the other social media accounts as I have more experience in that area and her fibro fog got the better of her when I was trying to show her Haha My turn to laugh Our Facebook page Twitter page 26

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By the 3rd of March we were invited to attend Peak fm to be interviewed by Josh where we also met the rest of the team and the majority hadn t even heard of fibromyalgia They seemed gobsmacked whilst we were describing the illness as if it wasn t real sound familiar Through research and shall we say a few polite prompts we made contact with Dr Kim Lawson who is currently senior lecturer in pharmacology at Sheffield Hallam University and also head of FMAUK S medical advisory board If you have any interest in the scientific research side of things I suggest that you take a look at his work it s rather interesting to read through and gave me a little more help in understanding the condition A special thanks to Peter and Kim for their support encouragement and to our on going partnership with you both in the future You have both been such a big help Fast forward a few days Monday 6th of March our petition stood at 12 000 signatures before our interview aired and then by Wednesday 8th we were announcing that we d hit 15k We also had good news and bad Toby Perkins had written on our behalf to the Secretary of State for Health but the celebrations were soon cut short I had received an abnormal screening and had to attend hospital for a colposcopy On the same day as my procedure Adrienne did an interview with BBC Radio Sheffield they came out to her home and made contact with the chair of FMAUK The interview of Adrienne s perspective only aired for 2 minutes out of a total interview time of one hour in which it only let Adrienne explain the condition and not actually explain what we are doing and why She even explained the reason I missed the interview the link to the interview can be found on the BBC Sheffield Radio website We have been shown so much kindness by the smaller groups you know who you all are and I think you re fantastic To people just in general across all of social media we would like to say a big thanks for the encouragement and support from each and every one of you it truly means a lot being the new kids on the block We should ALL be working TOGETHER there I said it ALL TOGETHER To raise the awareness and education of the condition we won t be offended if you don t sign our petition but offer instead to spread the word on social media in your home town or generally when you re out and about Show your fellow fibro warrior community the support that it keeps asking for It s time we actually made this invisible illness seen along with all of the others right in the front and centre so people stand up and take notice not just brush it under the carpet and hope it goes away Because for those of us who live with these invisible conditions it s our daily life it never goes away Sometimes it may ease but we re always waiting for it to rear its ugly head again as we can never predict when we end up in a flare 27

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As for a miracle cure me personally I must have tried nearly everything in the book From exercise diets trying to get a normal night s sleep but my brain and body always seem to disagree with me on that level and medications most of which are keeping the restless legs at bay and helping the depression and anxiety so I can at least try to rest in bed Painkillers don t even take the pain away it s there constantly nagging chipping away more of the person you were before I do promise the newly diagnosed though that this does eventually pass Talk to friends and family about the condition get them involved in research and help each other understand I shut myself away at the beginning only coming out of the house for appointments or to attempt the school run It s like you go through a grieving process for the person you were so many years ago It s hard at first but getting to know a vast majority of the groups across the UK there s a saying that we are fighters we are fibro warriors and it s true You have to fight for people to listen and understand to get a diagnosis and proper treatment All of this while it feels like you put on a mask for the outside world a smile on your face and keep saying I m fine We stumbled across 2 poems by Terry Haslet who is also fibrolight on Facebook 28

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The way that you put into words on how exactly every fibromyalgia and invisible illness sufferer feels is truly amazing Myself and Adrienne would like to thank you from the bottom of our hearts for all of your support and consent to use your poems to help spread the awareness and for others to understand what we have to go through as sufferer s on a daily basis Fast forward from there we are now working with an amazing lady Beth Urmston She set up the charity Fibro Flare Awareness Group which was originally a magazine and then the social media and websites soon followed only gaining charity status in December 2016 She is helping us every step of the way and we are looking into possibly becoming trustees for her The petition is going strong still with over 25 000 signatures and climbing It s still hard to believe how far we have come in such a short space of time and being accepted straight away into the community Thank you to Faye Dempsey and David from rock_off_fibro you as individuals have been so kind and empowering and it has truly kept me going There are so many others I wish to thank but I d be here all day typing them up You know who you all are The ladies and gents from the Chesterfield Fibromyalgia group you are all fantastic You re all willing to go that extra mile to help each other I just wish a lot of others had your compassion and kindness for others as you all do I m writing this and have only spoken to you so far on the forum From here it s onwards and upwards We have our first events planned for May the 12th light up the night and the 13th our actual fundraising event at St Michael All Angels Church in Brimington Chesterfield where the local fibro community have been so helpful Our friend and Vicar Daniel has given us permission to light up the church and use the church hall we promise to look after them Fingers crossed everything goes without a hitch For now we will continue to raise awareness of the invisible illnesses help others to understand and not ignore those who suffer in silence There s been too many stories we have been told and they re not the happily ever after type Re educate the GPs and wider community again so they can help and understand Eventually in the not too distant future we are hoping to assist with setting up a specialist centre for people with these invisible illnesses and hopefully lead to a road of a minimal pain free life To help you understand our petition a little better and get it to parliament 1 It s not just about getting fibro classed as a disability 2 We re here to raise awareness of the condition and the other invisible illnesses and chronic diseases me cfs as part of our charities constitution 3 It s not about benefits or monetary gain for us 4 We want to get better treatment for others like ourselves 5 To educate the wider community 29

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6 To banish the stigmas 7 To support others like ourselves through our page and our own community 8 Get the help for fellow sufferers they deserve 9 To help our charity Fibro Flare Awareness group do all of the above AND BELOW 10 To get our voices heard AS A UNITED COMMUNITY 11 We are willing to work with fellow fibromyalgia groups and charities to spread the awareness and achieve these goals This is not JUST ABOUT US this is for the entire fibromyalgia community REMEMBER WE ARE FIGHTERS WE ARE FIBRO WARRIORS https www change org p uk parliament makefibromyalgia a disability 30

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Help Raise M E Awareness Hi everyone I m called Sophie and I m a 25 year old M E Myalgic Encephalomyelitis sufferer I m guessing most of you reading this will be thinking what the hell is M E And how do you even say that Well you would be in the majority of people who have no doubt never heard of it unless you are on my friends list as I bang on about it all the time lol So May is M E awareness month and each year I try to help raise awareness by doing an M E awareness video normally it s about mine or other people s M E journey but this year I want to do something different I want to get as many people as possible to take photos with the message Help raise M E awareness this May to add into one long video I m looking for M E sufferers non M E sufferers people in the public eye celebs Just anyone who is willing to join in I want single and group photos and they can be as simple or as crazy as you want M E is such a serious life destroying condition to thousands of sufferers that a lot of people have never heard about so let s help change that In the video I will add links so people can click on and learn about M E helping to educate people and yourselves about this condition and current research trials that are going on So come on what are you waiting for Today it s me but tomorrow it could be you Don t wait for that day So make a sign message take a photo send it to me and help make a difference Sending lots of thanks and love to you all Sophie Tennent 31

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PACE Trial latest Story by Tony Britton 12 February 2017 http www meassociation org uk 2017 02 29928 MEA to pay for open access to independent reanalysis paper The ME Association believe that a recent independent re analysis of the PACE Trial data is such an important document that we have paid the publisher Taylor Francis to open the full paper for all to read At the moment the full text is hidden behind a paywall and the most that people can read without paying a hefty subscription is a 213 word abstract When the unpublished PACE trial data was re analysed by Wilshire et al 2017 the authors found that when recovery was defined according to the original trial protocol recovery rates in the CBT and GET groups were low and not significantly higher than in the control group 4 7 and 3 respectively The authors concluded The claim that patients can recover as a result of CBT and GET is not justified by the data and is highly misleading to clinicians and patients considering these treatments The paper was published in Fatigue Biomedicine Health Behaviour an American publication regarded as the house journal of the International Association of CFS ME This organisation holds big biannual conferences in the States But as the publisher only allows free public access to an abstract the whole paper can only be read for a fee MEA medical adviser Dr Charles Shepherd commented The MEA believes that this is such an important item of research that we have paid for the whole paper to be made open access This will mean that everyone health professionals in particular will now be able to read the very important findings from the re analysis of the PACE trial recovery data As soon as our contractual arrangement with the publisher is finalised the full paper will be available to view on the MEA website The MEA has negotiated a reduced fee of US 2 000 with Taylor Francis THE PUBLIC ACCOUNTS COMMITTEE DECLINED AN IMMEDIATE INVESTIGATION In a separate development the influential Public Accounts Committee of the House of Commons have declined to launch an immediate investigation into whether taxpayers got value for money out of the 5m put into the PACE Trial 32

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The chairman Meg Hillier MP has told the Countess of Mar who called for the inquiry that she will take no action until after NICE has completed their next review of their guidance on ME CFS expected in the summer of next year There has been lengthy correspondence between Meg Hillier s office and the Countess some of which was released at the beginning of February It shows that Meg Hillier has called in the National Audit Office for advice The latest letter from Meg Hillier can be read in full here www meassociation org uk wpcontent uploads public accounts committee pdf 33

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CRAFTY CORNER Showcasing your hobbies arts crafts By Sandra Humphrey Book folding Macram and Card making About a year ago my cousin showed me how to make a hedgehog by book folding and that was it I was hooked I prefer to use hardback books as they stand up well on their own but I do also use paperbacks These books I buy from charity shops costing no more than 1 As well as making a variety of designs including wedding cakes candles and fairy houses I like to put some of my creations into frames I found some groups on Facebook to join they are a great source of information and tips etc 34

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Although I had never really done any type of crafts before book folding sparked my creativity and I also started to make cards It s so much more personal to give a card that is handmade whatever the occasion may be The inspiration for my designs comes from anywhere and everywhere in magazines in shops or on Facebook Each card can take up to two hours to make I like to use a variety of embellishments to make my cards such as ribbons beads and a variety of paper card Back in October whilst I was at a local craft fair I saw someone doing macram When I got home I found a course at Riverside Beads in Market Deeping and signed up I like to look on the internet for inspiration and then add my own twist on things Crafting is so relaxing and I love learning new skills It also helps to take my mind off of my pain unless I get carried away and then it can make it worse I have turned my shed into my craft room but when it s too cold to sit in there I bring my crafting into the house Occasionally I do sell my work to friends but I would love to get a website set up I have just started to make Jewellery as well 35

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Exercise With Chronic Illness Yes You Can Hey guys I know I know the title might be a bit provocative But you know I suffer from M E and fibromyalgia so I understand how hard it is to exercise with chronic illnesses or even make it out of bed As my M E is moderate to sometimes severe physical activity is often very difficult for me What this post is going to be about is how all of us with chronic illnesses can do something it s about finding what works for your personal level M Y I NS P I RATI O N S P O N S O RE D P O S T One thing that inspired this post was the reaction I had to my recent Spoonie New Year s Resolutions post Often posts like that are discouraging as they aim way too high for my level of health and I just can t relate Hitting the gym 5 times a week I d be happy to make it out of bed 5 times in a week So many spoonies contacted me to say that they d enjoyed my post as it was more relevant and relatable to them When Mobility Nationwide contacted me about their AchievementForAll campaign it was the perfect timing Inspired by the Rio Games last summer Mobility Nationwide who specialise in mobility vehicles launched their campaign to encourage people of all levels into activity This times in perfectly with my own NYE resolution of re starting hydrotherapy This post is sponsored by Mobility Nationwide but all content ideas and opinions are my own E X E RCI S E W I TH C H RO NI C I L L N E S S W HAT I S E X E R CI S E The important part of this is defining what we mean by exercise Of course most healthy people would class exercise as going for a run hitting the gym or doing yoga That is often completely unachievable for spoonies obviously depending on your level of fatigue or disability What I m talking about here could more accurately be defined as activity For me and a lot of spoonies I know having a shower and washing our hair is absolutely exhausting This can definitely be classed as an activity Having a shower involves standing for the duration reaching up with our arms a lot bending down twisting to wash our bodies etc Then if you have long hair like me that s an added 15 minutes of towelling it off brushing out all the knots and drying it with a hairdryer It s genuinely like a marathon for people like me 36

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That s why I want to touch on physical activities that even those with more severe illnesses disabilities can achieve I am not an expert I just speak from personal experience and from speaking to a lot of the spoonie community I completely understand that this sort of thing is not possible for some people I also get that sometimes you may be able to do some physical activity that you can t on other days my M E is very variable day to day sometimes I can t do anything useful But for those that can I hope this post inspires you to add something to your routine 5 WAYS TO EXE RCISE W ITH CHRON IC ILLNE SS 1 2 3 Starting with those who are most mildly affected here are some things you could look at doing a few times a week or even daily if you are able Start the morning with a yoga inspired stretching routine this will get rid of all your overnight stiffness and get your body going There are yoga tutorials of all levels on YouTube which are free and easy to follow Got a bit of time in the evening Use your house as a mini gym You can use the bottom stairs to do a step workout or even walk carefully jog up and down the stairs repeatedly if you re feeling energetic Use the back of a chair as support whilst you do some squats keeping your back straight Got some tins in the cupboard You can hold these whilst doing some arm exercises as they act as light weights If number 1 is a bit too ambitious for you I feel ya Cardio exercise with any illness like M E can be extremely difficult and some believe dangerous so make sure to work up your stamina slowly and carefully My M E is moderate to severe variable and I am also usually in a lot of pain from my fibro One thing I have found really helpful is hydrotherapy I ll be honest at first it is very difficult when you re mostly bed housebound It s a big challenge but it is achievable and really did help my stamina and pain levels I documented my entire hydrotherapy journey so if you want to find out more everything you need to know should be there Unfortunately I was unable to do it for the second half of 2016 but I am restarting again next week wish me luck If you re mostly bedbound and not up to leaving the house or anything too physical these ideas are for you I used to have an all or nothing attitude to physical activity when I first got ill Because I couldn t do my usual high level cardio exercise and I struggled even using stairs or walking a few metres I thought all I could do was rest in bed The M E clinic helped me realise that if I could push myself to do a few simple stretches throughout the day it would help my stamina It would also reduce my pain levels as some of the pain was coming from being bedbound and getting very stiff 37

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I have a very simple 2 minute stretch routine than I can manage once on most days even days that I m not feeling great They are based on ones I was given by the physio but are pretty generic I do neck stretches side to side and up and down I hold each arm behind my head and then in front of me like a warm up exercise I put my hands on my hips and then lean back ten times which helps reverse the effects of slouching on the back I also slowly bend all the way down as though trying to touch my toes which I can t and hang there for a bit to really stretch out my back arms and neck Come back up from this slowly otherwise you can get dizzy 4 If you re able to get out of bed for a brief period of time but aren t up to too much moving about this one is for you A lot of things from yoga can be perfectly adapted to be less strenuous One particular move is called Child s Pose and is great for stretching the hips back and legs but in a very gentle way It doesn t stress the body but helps relax the muscles whilst carefully stretching It can be made deeper if you choose to sink lower into the pose but this isn t necessary to benefit from it You simply kneel on the floor place your forearms on the floor and scooch them out further away from you until your head is resting on the floor and you re sitting on your heels The further out you move your arms the closer to the ground the rest of your upper body and the deeper the stretch You may find you can t move your arms out far to start with this is fine You should be able to move further in time when your tight muscles have been stretched out This is an extremely relaxing pose and is a great one for if you just need a few moments to yourself to relax and feel calm It was hard to describe how to do it but a quick google will show you how 5 If you are mostly or fully bedbound or confined to a wheelchair I understand any form of activity or movement can be difficult If you feel able or are approved by your medical team there are some small changes you can make to help retain muscle tone When bedbound it s really difficult to keep your muscle tone as you are rarely taking your own body s weight or moving the muscles Loss of muscle tone can in turn lead to it being even more difficult to move around if when you are able to get up as your body becomes deconditioned There are exercises you can do in bed even whilst lying down These are the sort of thing they often do in hospitals to prevent bedsores and deconditioning of their patients Some examples are raising your leg into the air as far as you comfortably can Hold it in place if you are able if not place your leg back down and then repeat You may only be able to do a couple of repetitions to start with that s fine Think of it this way it s a couple more than you were doing Progress has to start small and build up There are plenty of useful exercises online or on YouTube Have a look and find something that you are happy to follow 38

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ACHIEVEMENTFORALL I hope you enjoyed this post and found it helpful My goal was that every spoonie could find something they could do to stay that little bit more active Now I m a spoonie I know that some days you ll be happy if you ve managed to wash your face But on those slightly better days why not take a step towards helping your body stay a bit more strong and supple Not to mention how positive it is for the mind to feel like you re in control and doing something to help manage your illness www katiecupcakelifewithme com January 12 2017 39

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Thank you for becoming an N rem Affiliate We are thrilled to welcome you to the N rem family as one of our Affiliates When one of your audience purchases an N rem mattress with your unique voucher code you will receive 30 The customer too will receive 30 off their order The N rem Affiliate Scheme will launch 8th August 2016 Add in this code at check out to get 30 off your order FIBROFLARE Information on the N rem Mattress 3 different densities of deep reflex foam tablets in firm medium and soft Ideal for chronic pain sufferers to provide comfort for painful areas and support where needed 40mm Viscoool foam comfort layer with an open pored structure to regulate body temperature Each reflex foam tablet is easily interchanged in the comfort of your own home 40

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Personally tailored options on each side of the bed allows you and your partner to have individual set ups 2 000 springs for added comfort and bounce Natural cotton cover aiding a cool night s sleep Both the quilted cover viscoool layer and foam tablets can be easily removed for cleaning Find out more information on the N rem Mattress Copyright 2016 Foam Comforts Europe Limited All rights reserved You are an N rem Affiliate 41

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Arts and Crafts By Ailsa Bancroft Father s Day Card You will need A piece of strong card Broken crayons Paint Glue Method 1 Paint your child s hand and print on to the card 2 Using different colours write I m as lucky as can be The best Daddy in the world belongs to me Happy Father s Day Lots of love from 3 Stick broken crayons to make a frame round the edge of the card 42

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Awareness day Why not make several and turn into a mobile or hang them at your windows You will need Purple foam White foam Pencil Glue Felt tips Scissors Method 1 2 On the foam draw 2 large hearts in purple and 2 large hearts in white On the white foam draw 3 smaller hearts and on the purple foam draw 4 smaller hearts 3 4 5 6 Cut the hearts out Stick the smaller hearts onto the large hearts Then glue the 4 larger hearts together slightly overlapping them Glue the 2 remaining purple hearts into the middle with the remaining white heart glued on for the head Draw on a smiley face 7 43

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GOING BANANAS Which musical instrument is found in the bathroom A TUBA toothpaste What do Elves learn at school The ELF abet Why are teddy bears never hungry Because they re always stuffed 45

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Dr Ginevra Liptan Dr Liptan is a doctor living with fibromyalgia With her medical knowledge and her understanding of fibromyalgia she is well placed to advise on methods that have proven beneficial to her and her fibromyalgia patients I find her to be open minded and think she talks a lot of common sense There are several videos on you tube https www youtube com watch v I_1WsbnDNg8 Her book as well as the book The Fibro Manual both hard copy and Kindle versions is available on Amazon It s a great guide to helping yourself but also includes a section for ways doctors can help patients Dr Liptan can also be found on LinkedIn http www fridacenter com 46

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Animal Magic By Kelli Ellis Five years ago a friend of mine thought it would be a good idea to get 3 puppies for her 3 children She soon realised that she was in over her head and she offered me Lily and from that day my life changed forever for the better Lily was 4 months old when she came to live with me and I ve had her for 5 years now Shes a Shih poo which is a cross between a shih tzu and a poodle My sassy little princess loves to express herself At five years of age she is still really playful When shes not playing she loves a cuddle I am so grateful that Lily has come into my life she has literally saved me When I feel my life is impossible when things are hard and I m feeling down she s always there for me without question As a sufferer of fibromyalgia CFS ME and depression your world becomes smaller and smaller Since her arrival she has given my life purpose again We all want to feel needed don t we No matter how ill I am or how down she gives me strength and I have no choice but to get up as Lily needs to go out etc so hiding away from the world in my bed is no longer an option Her love and support is unconditional She needs me as much as I need her 47

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NHS Making a Complaint By Beth Urmston Making a Complaint If you think you have been treated unfairly or been disrespected there are a few avenues open to making a complaint The following is taken from the NHS website There is a simple two stage process for complaints about NHS services Your NHS complaint what to do first Every NHS organisation has a complaints procedure If you want to complain about an NHS service such as a hospital GP or dentist ask the service for a copy of their complaints procedure which will explain what you need to do You may choose to make a complaint in writing by email or by speaking to them If you speak to them they may be able to resolve your concerns without you having to go through the formal complaints process This is called a local resolution It aims to resolve complaints quickly and most cases are resolved at this stage However if you don t feel comfortable raising your concerns directly or your problem wasn t resolved and you would still like to make a formal complaint follow the NHS complaints process You may make a complaint to either the organisation that provided your healthcare or the organisation that commissioned that NHS service The commissioning body will be either the local clinical commissioning group CCG for hospital care or NHS England for GP dental pharmacy and optical services Time limit for NHS complaints You should make your complaint as soon as possible The time limit for a complaint is normally 12 months from the date the event happened or 12 months from the date you first became aware of it Patient Advice and Liaison Services PALS You can get help and advice from Patient Advice and Liaison Services PALS whose officers are available in most hospitals They offer confidential advice support and information on health related matters to patients their families and their carers 48

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NHS Complaints Independent Advocacy Service Individual local authorities have a legal duty to organise independent advocacy services to provide support for people who are making or thinking of making a complaint about their NHS care or treatment Find details for your local council on the GOV UK website Contact your local PALS complaints manager or local authority for information about how this service is provided in your area Citizens Advice Bureau You can also get advice and support from your local Citizens Advice Bureau if you want to complain about the NHS social services or local authorities See their website for information on how to get advice from the Citizens Advice Bureau Other options for making a complaint If you feel too uncomfortable to complain to the service provider directly you can make a complaint to the commissioner of the services instead NHS services are commissioned planned and paid for by either NHS England or clinical commissioning groups CCGs If you re unhappy with the response to your complaint after trying a local resolution another option is to complain to the Parliamentary and Health Service Ombudsman The ombudsman carries out independent investigations into complaints about government departments their agencies and the NHS You can call the ombudsman s complaints helpline on 0345 015 4033 or see their website for more information about contacting the ombudsman You can also raise your concerns by contacting regulatory bodies such as the Care Quality Commission For more information see about NHS complaints http www nhs uk chq pages 1084 aspx categoryid 68 49

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Current Research Trials in the UK USA By Beth Urmston The following are only some of the research trials currently recruiting and have been taken from the NHS UK website More information can be found at http www nhs uk conditions fibromyalgia pages clinical trial aspx CT 0 Rec 1 Countries All Countries pn 6 Title Recruitment status Location Self Soft Tissue Therapy for Fibromyalgia Syndrome Recruiting United Kingdom Cyclobenzaprine Extended Release ER for Fibromyalgia Recruiting United States PEACE Comparing Chronic Pain Treatment Options Recruiting United States Neuroimaging Effects of Cognitive Behavioural Therapy in Fibromyalgia Recruiting United States Peer Mentorship An Intervention To Promote Effective Pain Self Management In Adolescents Recruiting United States Transcutaneous Electrical Nerve Stimulation TENS and Fibromyalgia FM Recruiting United States Suvorexant in Insomnia Comorbid With Fibromyalgia Recruiting United States Pain Outcomes Comparing Yoga Versus Structured Exercise POYSE Trial Recruiting United States Study to Assess Mechanisms in Peripheral Tissue Innervation for Fibromyalgia Recruiting United States Study of Fibromyalgia Treated With Milnacipran Recruiting United States 50

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Easy Fundraiser Do You Shop Online Did you know that whenever you buy anything online from your weekly shop to your annual holiday you could be raising a free donation for Fibro Flare Awareness Group There are nearly 3 000 retailers on board ready to make a donation including Amazon John Lewis Aviva Thetrainline and Sainsbury s it doesn t cost you a penny extra It s really simple all you have to do is 1 Join Head to https www easyfundraising org uk causes fibroflareawarenessgroup and sign up for free 2 Shop Every time you shop online go to easyfundraising first pick the retailer you want and start shopping 3 Raise After you ve checked out that retailer will make a donation to your good cause for no extra cost whatsoever There are no catches or hidden charges and Fibro Flare Awareness Group will be really grateful for your donations Thank you for your support 51

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Fibro Community The link below is to a world map of others who have fibromyalgia Add your name and location find others near you Local support can go a long way to alleviating isolation It gives more chance of a meet up if only occasionally and a local fibro friend who will understand There are several local groups listed at the back of the magazine but there is a need for many more to be set up If you would like to form a local support group and this could be just for a coffee and a chat then contact Beth Urmston fibroflaremag1 outlook com It s a great way to help yourself whilst helping others and can give extra meaning to your life Why not make a New Year s resolution to at least give it a try https www diseasemaps org en fibromyalgia join the map 52

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Fibro Flare Magazine Online Shop To visit the shop click here http fibro flare shop myshopwired com 53

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disabledviewuk yahoo com disabledviewuk DisabledViewUk was set up out of a group discussion between Caregiver s and Disabled People who were and still are concerned about the many systemic failings in our Society to date There are far too many Issues that are affecting the wellbeing of Disabled People and Caregivers with a proper consultation in place a lot of safeguards could be reached and established to prevent the many of the Issues being experienced currently 3 major key factors have come to light and this was the grounds for the foundation of DisabledViewUk Independent Disability Commission Positive Pathway Programme National Support group for Disabled People Caregivers and Advocates DisabledViewUk provides Crisis support member enquiry support welfare advice support we also contact Government departments Agency and Charities when required We have supported members in highlighting their cases raising them when required too parliamentary level To date we have had 100 positive outcome on every case we have supported We have consulted on Government consultation at local and national level As National Group DisabledViewUk is growing in membership every day We are speaking out against the reforms as they stand due to the systemic on going and fundamental failings We are requesting a reconsideration of policies involved Our main objective for 2016 is the foundation of The Independent Disability Commission we are preparing draft document and calling for a National a consultation and discussion We are non political group looking to encompass the views of Disabled People Caregivers Charities National Government Local Government Bodies all Political Parties Employment Sectors Health Sector NHS wellbeing and Social Care Agencies within the UK To provide a Positive National Platform in Addressing Establishing and Supporting the Rights of Disabled People and Caregivers 54

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Warm Home Discount Scheme Extra help with gas and electricity bills during the winter months for pensioners and other vulnerable people from the Warm Home Discount Scheme https www citizensadvice org uk consumer energy supply help if you re older disabled or on a low income warm home discount scheme It has been confirmed the Warm Home Discount has been extended until 2021 with a yearly review Applications for the core group should begin in July the broader group in October Also the discount is applied to your electricity account not gas If you have a prepayment meter you will be sent a voucher to use to top up Occasionally the shop will put 70 on each but they aren t supposed to Core Group Pensioners They are automatically getting paid each year they check the data with DWP Only when they have been paid do applications open for the broader Broader Group low income DLA PIP children Broader group funding is limited so it s first come first served and each energy supplier will have their own criteria Each energy supplier has its own criteria for the broader group Anyone needing clarification should contact their own energy electricity supplier Help for people on a low income the Social Fund and other welfare schemes Information on community care grants budgeting loans and crisis loans and maternity grants funeral payments and cold weather payments https www citizensadvice org uk benefits help if on a low income help for people on a low income the social fund and other welfareschemes 55

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Groups Groups we are affiliated to who help and Juvenile Fibromyalgia Group https www facebook com groups support us JuvenileFibromyalgiaUKSupport Dubbo Fibromyalgia Support Group Sophie s ME Awareness Campaign https www facebook com DubboFibromyalgiaSupportGroup fref ts https www facebook com groups 851991271478504 Fibro Family You re Not Alone https www facebook com groups 1645989475667771 Fibro Social Club UK https www facebook com groups 760266097417614 fref ts Fibro Support UK https www facebook com groups 818013851580139 Fibromyalgia Awareness and Advocacy Ireland https www facebook com groups fmawarenessadvocacy FIBRO FLARE MEET UP GROUP Don t forget to check out our new group putting you in touch with others in your area https www facebook com fibromeetup Blogs Donna Gregory Burch http fedupwithfatigue com Sally K Burch http sallyjustme blogspot co uk Fibromyalgia Meet Up and Support Leicester https www facebook com FibromyalgiaMeet Ups and Support Leicestershire907503995937440 fref ts Folly Pogs Fibromyalgia Research http www fibromyalgiasoutheast org uk index html https www facebook com FollyPogsFibroResearchUk fref ts Hope 4 ME and Fibro N Ireland https www facebook com groups newryandmourne me fms 56

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Important Notice By Beth Urmston We have a bank account where you can transfer funds using online banking This means you do not have to use PayPal and will net us more of your donations as we will not have to pay their fees Donate or pay for goods direct to the bank when you pay 5 we will receive 5 Donate or pay for goods via PayPal when you pay 5 we receive an average of 4 63 Our accounts are handled by Kate Lis who is a volunteer For bank account details please contact Beth Urmston When making payments please add your initial and surname e g B Urmston in the reference NB This only applies to UK donations and payments Overseas members should continue to use PayPal as bank charges for transfers from overseas cost approximately 25 per transaction To ensure we remain safe and legal we will in future request that all PayPal payments for Goods Services are dealt with as such We will have to forego approximately 5 of contributions but we hope to still be able to make the most of every penny we do receive If you would like more information or help when making payments please contact Beth and she will be happy to guide you through the process Our PayPal account is fibroflaremag1 outlook com Remember to use Goods Services when making payments 57

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To all our regular contributors our wonderful readers and everyone who has done anything to raise awareness in whatever way they were able this month and especially to those who donated Disclaimer The information provided within the magazine is for information and should not be used as an alternative to seeking the advice of a medical professional In case of emergency call UK 999 For out of hours advice ring 111 USA 911 EUROPE 112 This emergency number applies to all European countries Links to other sites are provided for information only and do not constitute endorsements of those sites or any of the content or opinions provided therein The information contained within the magazine aims to be as accurate as possible at the time of publishing The information contained herein is for support and general advice only Readers shall not hold Fibro Flare Magazine or any associated persons or entities liable for any use or misuse relating to the information provided Readers should always consult with their medical practitioner regarding their own specific health issues It is assumed all contributions articles etc for inclusion in the magazine are those of the individual contributor or do not break copyright laws Neither Fibro Flare Magazine nor any of its associates can or will be held responsibility for these items E OE Email fibroflaremag1 outlook com Facebook https www facebook com groups fibroflare Website www flaremag co uk Charity Registration No 1170884