{"id":38631,"date":"2020-01-06T16:39:10","date_gmt":"2020-01-06T16:39:10","guid":{"rendered":"http:\/\/jomec.co.uk\/thecardiffian\/?p=38631"},"modified":"2020-01-06T16:39:10","modified_gmt":"2020-01-06T16:39:10","slug":"fibromyalgia-the-invisible-illness","status":"publish","type":"post","link":"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/2020\/01\/06\/fibromyalgia-the-invisible-illness\/","title":{"rendered":"Fibromyalgia: the invisible illness"},"content":{"rendered":"\n<figure class=\"wp-block-image\"><img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/jomec.co.uk\/thecardiffian\/wp-content\/uploads\/2020\/01\/Cardiff-Vale-Fibrofighters-16x9.jpeg\" alt=\"\" class=\"wp-image-38634\" \/><noscript><img decoding=\"async\" src=\"https:\/\/jomec.co.uk\/thecardiffian\/wp-content\/uploads\/2020\/01\/Cardiff-Vale-Fibrofighters-16x9.jpeg\" alt=\"\" class=\"wp-image-38634\" \/><\/noscript><figcaption> Fibro-fighters in the Fairwater Pub<\/figcaption><\/figure>\n\n\n<p><em>\u201c<\/em><em>Do you see that tree, there?\u201d Cheryl asks, pointing out the window. \u201cImagine all<\/em><em>&nbsp;<\/em><em>the branches as nerve endings in your body<\/em><em>.<\/em><em>&nbsp;<\/em><em>W<\/em><em>ith fibromyalgia, it feels&nbsp;<\/em><em>lik<\/em><em>e<\/em><em>&nbsp;e<\/em><em>very branch is burning.\u201d<\/em>&nbsp;<\/p>\n\n\n<p>THE&nbsp;Fairwater Pub doesn\u2019t open until 11am, so I wait outside for Alan and Linda. They started the Cardiff and Vale Fibro-fighters group&nbsp;in Barry a year and half&nbsp;ago.&nbsp;Since then, they\u2019ve opened two more groups in Fairwater and Penarth.&nbsp;&nbsp;<\/p>\n\n\n<p>When I&nbsp;spoke to&nbsp;Alan Winning-Wyatt&nbsp;on the phone, he told me his wife had fibromyalgia. He used to be an ambulance driver but&nbsp;gave&nbsp;it up to care for&nbsp;Linda.&nbsp;<\/p>\n\n\n<p>Little is known about&nbsp;<a href=\"https:\/\/www.nhs.uk\/conditions\/Fibromyalgia\/\">fibromyalgia<\/a>.&nbsp;It is thought to be triggered by&nbsp;extreme stress or trauma. There are over 200 symptoms, but most sufferers experience&nbsp;extreme&nbsp;nerve pain, pins and needles, insomnia and \u201cfibro fog\u201d&nbsp;\u2013&nbsp;temporary&nbsp;memory loss.&nbsp;&nbsp;<\/p>\n\n\n<p>There are 18 trigger points around the shoulders, knees, elbows and hips,&nbsp;where someone&nbsp;with&nbsp;fibromyalgia will feel pain five times&nbsp;more than&nbsp;a normal person.&nbsp;<\/p>\n\n\n<figure class=\"wp-block-image is-resized\"><img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/jomec.co.uk\/thecardiffian\/wp-content\/uploads\/2020\/01\/Fibromyalgia-symptoms.jpg\" alt=\"\" class=\"wp-image-38633\" width=\"320\" height=\"418\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/Fibromyalgia-symptoms.jpg 640w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/Fibromyalgia-symptoms-230x300.jpg 230w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/Fibromyalgia-symptoms-500x652.jpg 500w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/Fibromyalgia-symptoms-293x382.jpg 293w\" sizes=\"auto, (max-width: 320px) 100vw, 320px\" \/><noscript><img decoding=\"async\" src=\"https:\/\/jomec.co.uk\/thecardiffian\/wp-content\/uploads\/2020\/01\/Fibromyalgia-symptoms.jpg\" alt=\"\" class=\"wp-image-38633\" width=\"320\" height=\"418\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/Fibromyalgia-symptoms.jpg 640w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/Fibromyalgia-symptoms-230x300.jpg 230w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/Fibromyalgia-symptoms-500x652.jpg 500w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/Fibromyalgia-symptoms-293x382.jpg 293w\" sizes=\"(max-width: 320px) 100vw, 320px\" \/><\/noscript><figcaption>Fibromyalgia has over 200 symptoms <\/figcaption><\/figure>\n\n\n<p>A car pulls up outside the pub and a man and two women get out. All three of them are wearing purple t-shirts with the fibro-fighters logo.&nbsp;&nbsp;<\/p>\n\n\n<p>The man is Alan, 52. He points to the driver of the car: \u201cThis is Linda, my wife,\u201d he says. She is a little stiff but shows no other&nbsp;obvious&nbsp;signs of illness.&nbsp;&nbsp;<\/p>\n\n\n<p>\u201cBecause it\u2019s invisible, it\u2019s so hard for people to accept that it\u2019s real,\u201d Alan&nbsp;explains. \u201cThey\u2019re suffering all the time and that\u2019s why we started the group: it\u2019s a support network.\u201d&nbsp;<\/p>\n\n\n<p>The second woman, Monique, is the&nbsp;group\u2019s&nbsp;secretary. She comes from the Netherlands, where fibromyalgia&nbsp;still&nbsp;isn\u2019t recognised as an illness.&nbsp;<\/p>\n\n\n<p>The fibro-fighters meet here every Monday morning. As Alan approaches the pub, the barman comes to unlock&nbsp;the door.&nbsp;&nbsp;<\/p>\n\n\n<p>Inside,&nbsp;we&nbsp;sit&nbsp;down at a big table by the window.&nbsp;<\/p>\n\n\n<p>\u201cI need a coffee,\u201d says&nbsp;Linda.&nbsp;<\/p>\n\n\n<p>Fibromyalgia prevents you from entering deep sleep, so she and Monique often feel like they never went to bed.&nbsp;<\/p>\n\n\n<p>Alan goes to get the coffee,&nbsp;and&nbsp;I ask Linda why they started the group.&nbsp;<\/p>\n\n\n<p>\u201cWhen I was diagnosed five years ago, I was given a booklet and told, \u2018there you go, get on with it\u2019,\u201d she says. \u201cThere was no information.\u201d&nbsp;<\/p>\n\n\n<p>\u201cFor a year we were just a coffee group, and then for the past six months we\u2019ve been applying to be a charity. I\u2019ve done a lot of research&nbsp;to help other people.\u201d&nbsp;&nbsp;<\/p>\n\n\n<p>Linda and Alan are&nbsp;in the process of getting their charity status approved and hope to see it come through before Christmas.&nbsp;<\/p>\n\n\n<p>Alan&nbsp;returns with the coffee, just as&nbsp;an elderly lady&nbsp;comes&nbsp;into&nbsp;the pub. She is smartly dressed, with her hair clipped back.&nbsp;I guess from her purple t-shirt that she is another&nbsp;member of the group.&nbsp;<\/p>\n\n\n<p>Her name is Thelma&nbsp;and as she sits down,&nbsp;Linda&nbsp;takes out a packet of&nbsp;chocolate biscuits.&nbsp;Soon we are joined by&nbsp;Margaret and Cheryl.&nbsp;<\/p>\n\n\n<p>Fibromyalgia affects more women than men, but&nbsp;Alan tells me there is usually a young&nbsp;man&nbsp;at&nbsp;the&nbsp;meetings.&nbsp;&nbsp;<\/p>\n\n\n<p>He&nbsp;rolls his eyes: \u201cThe women call him Mr Grey because he\u2019s so young and handsome.\u201d&nbsp;<\/p>\n\n\n<p>\u201cHe started his own business when the fibro meant he couldn\u2019t work a normal job anymore: he makes picture frames,\u201d&nbsp;says Alan.&nbsp;<\/p>\n\n\n<p>Fibromyalgia&nbsp;rarely strikes without a trigger. For some of the group, childhood&nbsp;trauma sparked their symptoms: for others, the condition was brought on by an accident or another&nbsp;illness.&nbsp;<\/p>\n\n\n<p>When she was 40,&nbsp;Margaret had a&nbsp;serious&nbsp;operation for&nbsp;endometriosis.&nbsp;Soon after this,&nbsp;her marriage broke&nbsp;down.&nbsp;&nbsp;<\/p>\n\n\n<p>Now 62, she&nbsp;believes&nbsp;the combined stress of these things triggered her fibromyalgia.&nbsp;<\/p>\n\n\n<p>\u201cI spent nearly two years in bed,\u201d&nbsp;Margaret&nbsp;says.&nbsp;&nbsp;<\/p>\n\n\n<p>She shivers slightly and buttons up&nbsp;her cardigan.&nbsp;<\/p>\n\n\n<p>\u201cYou cold, Margaret?\u201d Linda&nbsp;asks.&nbsp;&nbsp;<\/p>\n\n\n<p>Her friend&nbsp;nods.&nbsp;&nbsp;<\/p>\n\n\n<p>\u201cYou can\u2019t control your temperature,\u201d&nbsp;says Margaret. \u201cIt can go very high, or very low.\u201d&nbsp;<\/p>\n\n\n<p>Cheryl used to&nbsp;be a&nbsp;greengrocer&nbsp;and did a lot of heavy lifting.&nbsp;&nbsp;<\/p>\n\n\n<p>When she started to experience&nbsp;nerve&nbsp;pain, she went to her GP. However,&nbsp;they didn\u2019t recognise symptoms&nbsp;of fibromyalgia&nbsp;and sent her away with antidepressants.&nbsp;&nbsp;<\/p>\n\n\n<p>\u201cThey made me feel \u2013 ugh \u2013 rotten! I got so fed up that I ended up paying to see a rheumatologist in a private clinic,\u201d says Cheryl.&nbsp;<\/p>\n\n\n<p>Since then, she has spent all her savings on consultations&nbsp;at the Spire&nbsp;Hospital.&nbsp;<\/p>\n\n\n<p>Linda&nbsp;tells me the PIP (Personal Independent Payment) benefit requires you to fill out some &#8220;very personal\u201d forms.&nbsp;&nbsp;<\/p>\n\n\n<p>\u201cWhen I did mine, I felt like crying,\u201d&nbsp;she&nbsp;says. \u201cA lot of people look at them and say, \u2018oh well I\u2019m not that bad\u2019, but you have to remember what you\u2019re like on your worst days.\u201d&nbsp;<\/p>\n\n\n<p>\u201cI had PIP form training with Neath Social Services.&nbsp;It does help, and I do offer my services to people in the group,\u201d she says.&nbsp;&nbsp;<\/p>\n\n\n<p>Out of the 35 people she has helped, 29 have&nbsp;had their forms approved.&nbsp;<\/p>\n\n\n<p>As well as practical support, the group&nbsp;also offers friendship.&nbsp;&nbsp;<\/p>\n\n\n<p>\u201cBecause this group is regular, if people don\u2019t turn up, we email them to ask, \u2018are you okay?\u2019&nbsp;At least they know that we\u2019re thinking of them,\u201d Alan says.&nbsp;<\/p>\n\n\n<p>Thelma, 81, also runs a knitting group: \u201cI think you\u2019ve got to get up and do a bit,&nbsp;on your good days\u201d she says. \u201cI\u2019ll talk to anyone over a coffee. I like a chat, because I live on my own.\u201d&nbsp;<\/p>\n\n\n<p>It has taken a while for Thelma\u2019s family to recognise&nbsp;how much fibromyalgia affects her.&nbsp;<\/p>\n\n\n<p>\u201cPainkillers only deaden the pain,\u201d says Alan. \u201cThey don\u2019t take it away, because every pain killer has been designed for muscles and joints.\u201d&nbsp;<\/p>\n\n\n<p>Alan and Linda have been working hard to&nbsp;improve people\u2019s understanding of the illness. <\/p>\n\n\n<p>This year, South Wales Police have taken their advice onboard and are using the fibro-fighters&#8217; PowerPoint during first aid training for new staff.&nbsp;<\/p>\n\n\n<p>The fibro-fighters are also on the Cardiff airport disability forum, where staff to learn how to pat down&nbsp;someone with fibromyalgia&nbsp;without hurting them,&nbsp;and how to&nbsp;make them comfortable on&nbsp;long-haul flights.&nbsp;<\/p>\n\n\n<p>Alan is optimistic: he&nbsp;thinks&nbsp;now Lady Gaga and Morgan Freeman have&nbsp;said&nbsp;they have fibromyalgia,&nbsp;more people will&nbsp;be aware of the illness.&nbsp;<\/p>\n\n\n<p>\u201cThe three things we\u2019re looking for in further research are: finding a painkiller that works,&nbsp;finding something that helps them sleep,&nbsp;and a definite diagnosis&nbsp;of what fibromyalgia is.\u201d&nbsp;<\/p>\n\n\n<p>Around the table, the women are chatting about&nbsp;their&nbsp;plans for Christmas. I thank them for letting me&nbsp;join&nbsp;them and pack up my bag to leave.&nbsp;<\/p>\n\n\n<p>As I reach the door, I look back.&nbsp;They are engrossed in conversation:&nbsp;chatting like any other group of&nbsp;friends&nbsp;getting coffee.&nbsp;&nbsp;<\/p>\n\n\n<p>As Monique put it: \u201cIt\u2019s all about living for the good days.\u201d&nbsp;<\/p>\n\n\n<figure class=\"wp-block-image is-resized\"><img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/jomec.co.uk\/thecardiffian\/wp-content\/uploads\/2020\/01\/FFs-at-xmas.jpeg\" alt=\"\" class=\"wp-image-38653\" width=\"480\" height=\"346\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/FFs-at-xmas.jpeg 960w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/FFs-at-xmas-300x216.jpeg 300w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/FFs-at-xmas-770x555.jpeg 770w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/FFs-at-xmas-500x360.jpeg 500w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/FFs-at-xmas-293x211.jpeg 293w\" sizes=\"auto, (max-width: 480px) 100vw, 480px\" \/><noscript><img decoding=\"async\" src=\"https:\/\/jomec.co.uk\/thecardiffian\/wp-content\/uploads\/2020\/01\/FFs-at-xmas.jpeg\" alt=\"\" class=\"wp-image-38653\" width=\"480\" height=\"346\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/FFs-at-xmas.jpeg 960w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/FFs-at-xmas-300x216.jpeg 300w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/FFs-at-xmas-770x555.jpeg 770w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/FFs-at-xmas-500x360.jpeg 500w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2020\/01\/FFs-at-xmas-293x211.jpeg 293w\" sizes=\"(max-width: 480px) 100vw, 480px\" \/><\/noscript><figcaption>The fibro-fighters&#8217; annual Christmas dinner<br \/>(Photo: Alan Winning-Wyatt)<br \/><\/figcaption><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>\u201cDo you see that tree, there?\u201d Cheryl asks, pointing out the window. \u201cImagine all&nbsp;the branches as nerve endings in your body.&nbsp;With fibromyalgia, it feels&nbsp;like&nbsp;every branch is burning.\u201d&nbsp; THE&nbsp;Fairwater Pub doesn\u2019t open until 11am, so I wait outside for Alan and Linda. They started the Cardiff and Vale Fibro-fighters group&nbsp;in Barry a year and half&nbsp;ago.&nbsp;Since then, they\u2019ve opened two more groups in Fairwater and Penarth.&nbsp;&nbsp; When I&nbsp;spoke to&nbsp;Alan Winning-Wyatt&nbsp;on the phone, he told me his wife had fibromyalgia. He used to [&hellip;]<\/p>\n","protected":false},"author":133,"featured_media":38646,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[9,11,14,15],"tags":[8,10,12,13],"coauthors":[],"class_list":["post-38631","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-barry","category-fairwater","category-longer-reads","category-penarth-g-q","tag-fibromyalgia","tag-charity","tag-fairwater","tag-health"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.2 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Fibromyalgia: the invisible illness - The Cardiffian<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/2020\/01\/06\/fibromyalgia-the-invisible-illness\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Fibromyalgia: the invisible illness - The Cardiffian\" \/>\n<meta property=\"og:description\" content=\"\u201cDo you see that tree, there?\u201d Cheryl asks, pointing out the window. \u201cImagine all&nbsp;the branches as nerve endings in your body.&nbsp;With fibromyalgia, it feels&nbsp;like&nbsp;every branch is burning.\u201d&nbsp; THE&nbsp;Fairwater Pub doesn\u2019t open until 11am, so I wait outside for Alan and Linda. They started the Cardiff and Vale Fibro-fighters group&nbsp;in Barry a year and half&nbsp;ago.&nbsp;Since then, they\u2019ve opened two more groups in Fairwater and Penarth.&nbsp;&nbsp; When I&nbsp;spoke to&nbsp;Alan Winning-Wyatt&nbsp;on the phone, he told me his wife had fibromyalgia. 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