Hvem lider av fibromyalgi: “Det er som å ha 20 ss energi til bruk hver dag.”

Artist Anjie Mailey deler hennes erfaring med den misforstodte kroniske tilstanden som forårsaker smerte for millioner av mennesker.

Fibromyalgi er en langvarig kronisk tilstand som forårsaker smerte for millioner av mennesker, men er lite kjent og lite undersøkt, sier Jo Waters

Kirsty Youngs beslutning om å ta en pause fra Desert Island poster i fjor på grunn av hennes kamp med fibromyalgi, satte dårlig forstått tilstand i sentrum av oppmerksomheten.

Men presentatøren av BBC Radio er ikke det eneste berømte navnet som kjemper mot denne sykdommen på lang sikt.

Lady Gaga er et annet offer for høy profil fibro. Sangeren var så berørt at hun måtte avbryte de siste 10 datoene for en verdenstur i fjor.

Og skuespiller Morgan Freeman har også snakket om hvordan man skal takle hele kroppens smerte av tilstanden.

En nylig rapport fra parlamentet anslår at nesten to millioner briter har fibromyalgi, noe som er mer sannsynlig å forekomme mellom 20 og 50 år. Og kvinner er sju ganger mer sannsynlig å bli påvirket enn menn.

Symptomer inkluderer økt følsomhet overfor smerte, tretthet, muskelstivhet, problemer med å sove, kognitive og hukommelsesproblemer, hodepine og irritabel tarmsyndrom.

Kirsty Young bestemte seg for å ta en pause fra Desert Island-postene sist sommer på grunn av hennes kamp med fibromyalgi.

Deretter er det pins og nåler, en brennende følelse i huden, kramper i bena, rastløse ben, prikking og depresjon. Smerter kan oppleves hvor som helst eller i bestemte områder, og dette kan endres.

‘Øvelsen fikk meg til å føle meg bra igjen’

Anjie Mailey, 49, en kunstner og spesialbehandler i Øst-London, har hatt fibromyalgi i 15 år:

Mine symptomer begynte med uvanlige smerter og smerter; Hvis noen rørte meg lett, følte jeg meg som om de hadde slått meg.

Jeg var utmattet, som om musklene mine ikke hadde strømforsyning og hjernen min bremset. Jeg ville glemme ting hele tiden. Senere lærte jeg at dette ble kalt fibro tåke.

Det tok ham omtrent tre år å få en diagnose. Jeg dro til familielegen og jeg hadde test for å utelukke sykdommer som lupus og multippel sklerose, men alle var negative. Til slutt ble jeg henvist til en reumatolog som diagnostiserte fibromyalgi.

Mitt gjennombrudd kom da jeg ble anbefalt et selvforvaltningsforløp i fibromyalgi på Great Ormond Street Hospital i London, hvor vi fikk gruppeterapi, milde øvelsesklasser og ble lært hvordan å håndtere symptomene.

Treningen var egentlig den siste jeg følte, siden jeg var overvektig, var jeg ikke i form og med så mye smerte jeg brukte to canes, men jeg bestemte meg for å gå inn i et treningsstudio.

Anjie Mailey (Bilde: Ukjent samling)

Det skadet først, men jeg tok smertestillende og gikk videre. Det skadet hele dagen, men litt etter litt økte jeg muskelstyrken og motstanden min, og musklene mine skadet mindre.

Snart var jeg nok til å gjøre karate og kvinners boksing. Jeg deltok også i en slankingsklubb, og jeg mistet syv steiner.

De fortalte meg at du har 20 ss energi til bruk på en dag, og hver aktivitet vil koste deg en av dem.

Utfordringen er å planlegge hvordan du skal bruke den energien. Min smerte er fortsatt der, men jeg har lært å håndtere det og ta kontroll nå.

Hva forårsaker det?

Tilstanden er nå anerkjent som en funksjonsfeil i smertetærskelsystemet. Det er antatt at en feil i måten smerte signaler blir prosessert utvikler seg, selv om det er uklart hva som utløser denne.

Studier ved hjelp av hjernedimensjonering har funnet økende bevis som tyder på involvering av sentralnervesystemet.

“Pasienter blir for følsom for ytre stimuli og lav smerteterskel umiddelbart, slik at den berører kan være svært smertefullt,” sier Dr. Rod Hughes, en spesialist revmatolog i St. Peter Hospital i Chertsey, Surrey.

“Fibromyalgi er ofte sett på som et resultat av en slags stressende hendelse som for eksempel kirurgi, en ulykke eller en stor følelsesmessig traume som skilsmisse.

“Ofte har det vært et kritisk belastningspunktet og pasienter kan ha en historie med migrene eller IBS typesymptomer”.

Vanskelighetsgrad i diagnosen.

Da så mange symptomer overlapper andre forhold, og det ikke finnes noendelige diagnostiske tester, kan det ta tid, flere år, i noen tilfeller å få en diagnose.

Hazel Borland of Fibromyalgia Action UK av Storbritannia, den største veldedighetsorganisasjonen for fibro i Storbritannia, sier at hvis pasienter kan se en vennlig lege eller ikke, er det på grunn av deres postnummer.

“Mange pasienter forteller oss at deres symptomer forsvinner eller at de blir fortalt at de er deprimerte,” sier hun.

“Selv om det kan være sant, er de ofte deprimert på grunn av deres fibrosymptomer.

“Pasienter rapporterer også at de har flyttet fra en søyle til en annen mellom leger og spesialister, og det er bare en håndfull klinikker som spesialiserer seg på fibrose.”

Hun legger til: “Virkningen av fibromyalgi er undervurdert. Hvis folk ikke føler seg støttet, kan dette føre til depresjon og isolasjon, og til og med selvmord. “

Hazel anbefaler å søke en annen mening eller be om henvisning til et senter spesialisert på fibromyalgi …

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