Fibromyalgi: “Det känns som en smärta inuti benen”

Detta syndrom, som är tisdag, världsdagen, kännetecknas av kronisk smärta.Patienterna känner att behandlingar och vård inte är upp till par.

Fibromyalgi: “Hur man har ont i benen”

Blandine Bouedo brukade kalla sin smärta  “H21”  . “De andra tre timmarna var när jag sov. Och jag sov eftersom jag var utmattad,     säger han. Denna 55-åriga psykiatriska sjuksköterska har fibromyalgi. Ett syndrom som kännetecknas av kronisk smärta i kroppen, trötthet och sömnstörningar, vilket är dagen för tisdag. Enligt Haute Autorité de Santé (HAS) är mellan 1,4% och 2,2% av franska personer fibromyalgi, kvinnor i 80% och 90% av fallen. “Det känns som att det gör ont i benen, som att det blir elektriska stötar”,     säger Blandine.

Hans första smärta dök upp i slutet av 1990-talet, men han medger att han inte ägnade särskild uppmärksamhet åt honom. De började bli inaktiverade 2007, och under våren 2012      “bodde jag arton månaders nedstigning i helvete. Allting var smärtsamt för mig, det gick från roten av mitt hår till mina fötter. Du kunde inte röra mig längre, jag kunde inte gå längre. Jag var utmattad, jag gick upp som trött eller mer än att ligga ner     . Analgetika, intaget i höga doser, gör ingenting. Blandine lever med en intensiv smärta som hon utvärderar till 6 eller 7 av 10. Utan att stanna. “Det enda vi har i åtanke är smärta, det enda vi kan prata om är smärta.”

“Det lägger läkaren framför sin handikapp.”

Förlusten av det sociala livet är traditionellt i fibromyalgi. Eftersom de är uteslutna från många aktiviteter, kärnor av smärta och eftersom processionen, ibland otroligt, slutar och försvinner. “Om vi ​​säger att vi har migrän eller tandvärk, förstår folk det.” Men de konstanta och diffusa smärtan, som knappt lämnar andetag, kan inte föreställas    , säger Carole Robert, VD för Fibromyalgie France. För tretton år sedan trodde jag att jag hade multipel skleros: i tretton år hade jag väckt medkänsla. När jag diagnostiserades med fibromyalgi vaknade jag misstankar. Folk sa till mig: “Är du säker på att du är sjuk?”

Samma skepsis finns hos läkare, som anser att fibromyalgi är i huvudet. “Vi har en utbildning som fokuserar på rationalitet. Men här har vi ingen anledning eller behandling, lägger läkaren framför sin handikapp “,     säger reumatologen Jean-Luc Renevier, mycket medveten om syndromet. Eftersom fibromyalgi förblir i stort sett ett mysterium. Det finns      “många antaganden”     om sitt ursprung, men      “ingen har visat sin verklighet”, säger reumatologen. Det mest förvirrande är att det inte finns någon skada eller inflammation för att förklara denna uthålliga smärta. I radio är allt normalt. Vad vi vet är att hjärnan i fibromyalgi inte filtrerar smärtan tillräckligt. Världshälsoorganisationen erkänner fibromyalgi sedan 1992, National Academy of Medicine säger att det är en kamp som måste tas på allvar och har publicerat en rapport om politiken 2010 som är trovärdig i flera doktorers ögon.

Sjuksköterskan “skickade mig till ett akutsjukhus”

Förutom bristen på kunskap      “finns det en motvilja att ta hand om patienterna” eftersom det tar lång tid “,      säger     Dr      Renevier. Svaret görs ofta med (många) mediciner. Antalgic, därför, men också antidepressiva medel. “De ger oss mediciner, men de lyssnar inte på oss  “,     fördömer Blandine Bouedo. På grund av alla dessa behandlingar var levern allvarligt skadad, även läkarna pratade om deras deltagande. den    Behandlingar för fibromyalgi som inte har godkännande för försäljning i Frankrike (till skillnad från exempelvis USA) ordineras ofta för depression, vilket inte hjälper patienter att acceptera sin situation och känna igen sig.

Fibromyalgesik reduceras ofta till ditt syndrom: om du har ont, om du har problem, kan det bara bero på fibromyalgi. “I nödsituationer, från det ögonblick som vi säger att vi är fibro, tar de inte längre hand om oss, de injicerar oss med morfin och lämnar oss i ett hörn”,

      beklagar Blandine Bouedo. Frekventt beteende, som kan vara dramatiskt. Carole Robert var tvungen att gå till akutrummet för ett hjärtsjukdom och      “klockan 1:30 övertygade sjuksköterskan mig att hon var psykisk och skickade mig till ett akutpsykiatrisk sjukhus. Alla var överens om att det var mitt huvud     . Detta förmodade imaginära hjärtsjukdom var faktiskt förmaksflimmer. Några månader senare hade Carole Robert en stroke.

Fibromyalgi kan inte botas och en minoritet av patienter svarar på analgetika. Å andra sidan testas icke-medicinska metoder (avslappning, qigong, balneoterapi …) mer och mer. “Vi tycker mindre om smärta, vi har den andan som befrias”,    säger Carole Robert. Det är just därför Blandine Bouedo talar om hennes smärtor från det förflutna. “Jag känner fortfarande smärta, men jag lider inte längre.” Jag är inte längst ner i brunnen med svarta idéer. ”     Hon välkomnar funktionshinder på grund av sitt syndrom, hon började träna Qigong, i syfte att skapa en förening för personer med kronisk smärta. Hon, som spenderade mellan 300 och 400 euro per månad på medicinen, betalar nu bara 38 euro för sina akupunktursessioner.

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