Vem lider av fibromyalgi: “Det är som att ha 20 matskedar energi att använda varje dag.”

Artist Anjie Mailey delar sin erfarenhet av det missförstod kroniska tillståndet som orsakar smärta för miljontals människor.

Fibromyalgi är ett långvarigt kroniskt tillstånd som orsakar smärta för miljontals människor men är lite känt och lite undersökt, säger Jo Waters

Kirsty Youngs beslut att ta en paus från Desert Island rekord förra sommaren på grund av hennes kamp med fibromyalgi sätta det dåligt förståda tillståndet i centrum av uppmärksamhet.

Men presentatören av BBC Radio är inte det enda kända namnet som kämpar mot denna sjukdom på lång sikt.

Lady Gaga är ett annat offer för hög profil fibro. Sångaren blev så påverkad att hon var tvungen att avbryta de senaste 10 datumen för en världsturné förra året.

Och skådespelaren Morgan Freeman har också pratat om hur man ska hantera hela kroppens smärta av tillståndet.

En ny rapport från parlamentet uppskattar att nästan två miljoner britter har fibromyalgi, vilket är mer sannolikt att inträffa mellan 20 och 50 år. Och kvinnor är sju gånger mer benägna att drabbas än män.

Symtom inkluderar ökad känslighet mot smärta, trötthet, muskelstyvhet, svårigheter att sova, kognitiva och minnesproblem, huvudvärk och irritabelt tarmsyndrom.

Kirsty Young bestämde sig för att ta en paus från Desert Island rekord förra sommaren på grund av hennes kamp med fibromyalgi.

Då finns det stift och nålar, en brännande känsla i huden, kramper i benen, rastlösa ben, stickningar och depression. Smärta kan upplevas var som helst eller i specifika områden, och detta kan förändras.

“Övningen fick mig att må bra igen”

Anjie Mailey, 49, en konstnär och specialarbetare i East London, har haft fibromyalgi i 15 år:

Mina symptom började med ovanliga värk och smärtor; Om någon rörde mig lätt kände jag mig som om de hade slagit mig.

Jag var utmattad, som om mina muskler inte hade någon energiförsörjning och min hjärna dämpades. Jag skulle glömma saker hela tiden. Senare lärde jag mig att det här kallades fibro dimma.

Det tog honom ungefär tre år att få diagnosen. Jag gick till familjen läkaren och jag hade test för att utesluta sjukdomar som lupus och multipel skleros, men alla var negativa. Slutligen hänvisades jag till en reumatolog som diagnostiserade fibromyalgi.

Mitt genombrott kom när jag rekommenderades en självhanteringskurs i fibromyalgi vid Great Ormond Street Hospital i London, där vi fick gruppterapi, försiktiga träningskurser och lärdes hur man hanterar symptomen.

Övningen var verkligen det sista jag kände, eftersom jag var överviktig, jag var inte i form och med så mycket smärta jag använde två kanar, men jag bestämde mig för att träna ett gym.

Anjie Mailey (Bild: Okänd samling)

Det skadade först, men jag tog smärtstillande medel och gick vidare. Det skadade hela dagen, men lite efteråt ökade jag min muskelstyrka och mitt motstånd, och mina muskler skadade mindre.

Snart var jag tillräckligt bra för att göra karate och kvinnors boxning. Jag deltog också i en bantningsklubb och jag förlorade sju stenar.

De berättade för mig att du har 20 matskedar energi att använda på en dag och varje aktivitet kostar dig en av dem.

Utmaningen är att planera hur du ska spendera den energin. Min smärta är fortfarande kvar, men jag har lärt mig att hantera det och ta kontroll nu.

Vad orsakar det?

Villkoren är nu erkänd som en störning i smärttröskelsystemet. Det anses att en fel utvecklas i hur smärtsignaler behandlas, även om det ännu inte är klart vad som utlöser detta.

Studier som använder hjärnbilder har funnit ökande bevis som tyder på inblandning i centrala nervsystemet.

“Patienterna blir för känsliga för yttre stimuli och deras smärtgräns minskar omedelbart, så det faktum att de rör dem lätt kan vara mycket smärtsamt”, förklarar Dr. Rod Hughes, reumatologspecialist på St. Peters sjukhus. i Chertsey, Surrey.

“Fibromyalgi ses ofta som en följd av någon typ av stressfull händelse, som kirurgi, en olycka eller ett stort emotionellt trauma, som skilsmässa.

“Ofta har det varit en kritisk stresspunkt och patienter kan ha en historia av migrän eller IBS-liknande symtom.”

Svårighetsgrad i diagnosen.

Eftersom så många symtom överlappar andra villkor och det inte finns några definitiva diagnostiska tester kan det ta tid, flera år, i vissa fall att få diagnosen.

Hazel Borland of Fibromyalgia Action UK i Storbritannien, den största välgörenhetsorganisationen för fibro i Storbritannien, säger att om patienter kan se en vänlig läkare eller inte, beror det på deras postnummer.

“Många patienter säger att deras symptom försvinna eller att de får höra att de är deprimerade”, säger hon.

“Även om det kan vara sant, är de ofta deprimerade på grund av deras fibrosymtom.

“Patienter rapporterar också att de har flyttat från en pelare till en annan mellan läkare och specialister, och det finns bara en handfull kliniker som specialiserar sig på fibros.”

Hon tillägger: “Effekten av fibromyalgi är underskattad. Om människor inte känner sig stödda kan detta leda till depression och isolering, och till och med självmord. “

Hazel rekommenderar att man söker en andra åsikt eller begär en hänvisning till ett centrum som är specialiserat på fibromyalgi …

141 thoughts on “Vem lider av fibromyalgi: “Det är som att ha 20 matskedar energi att använda varje dag.”

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