Fibromyalgi: “Det føles som en smerte inne i beinene”

Dette syndromet, som er tirsdag, verdensdag, er preget av kronisk smerte.Pasienter føler at behandlinger og pleie ikke er opp til for høyt.

Fibromyalgi: “Hvordan å få smerte inne i beinene”

Blandine Bouedo pleide å kalle hennes smerte  “H21”  . “De andre tre timene var da jeg sov. Og jeg sov fordi jeg var utmattet, sier han     . Denne 55 år gamle psykiatriske sykepleieren har fibromyalgi. Et syndrom preget av kronisk smerte gjennom hele kroppen, tretthet og søvnforstyrrelser, som er dagen på tirsdag. Ifølge Haute Autorité de Santé (HAS) er mellom 1,4% og 2,2% av franskmenn fibromyalgi, kvinner i 80% og 90% av tilfellene. “Det føles som det gjør vondt inne i beinene, som det blir elektrisk støt,”     sier Blandine.

Hans første smerter dukket opp i slutten av 1990-tallet, men han innrømmer at han ikke var særlig oppmerksom på ham. De begynte å bli deaktivert i 2007, og våren 2012,      “Jeg levde atten måneds nedstigning i helvete. Alt var vondt for meg, det gikk fra roten av håret mitt til toppen av føttene mine. Du kunne ikke røre meg lenger, jeg kunne ikke gå lenger. Jeg var utmattet, jeg sto opp som sliten eller mer enn å ligge ned     . Analgetika, inntatt i høye doser, gjør ingenting. Blandine lever med en smerte av intensitet som hun evaluerer til 6 eller 7 av 10. Uten å stoppe. “Det eneste vi har i tankene er smerte, det eneste vi kan snakke om er smerte.”

“Det setter legen foran hans funksjonshemning.”

Tapet på sosialt liv er tradisjonelt i fibromyalgi. Fordi de er utelukket fra mange aktiviteter, kilder til smerte og fordi prosesjonen, noen ganger utrolige, slutter og forsvinner. “Hvis vi sier at vi har migrene eller tannverk, forstår folk det.” Men de konstante og diffuse smerter, som nesten ikke gir pust, kan ikke forestilles    , sier Carole Robert, president for Fibromyalgie France-foreningen. For tretten år siden trodde jeg at jeg hadde flere sklerose: i tretten år hadde jeg vekket medfølelse. Da jeg ble diagnostisert med fibromyalgi, våknet jeg mistenksomhet. Folk sa til meg: “Er du sikker på at du er syk?”

Den samme skepsis eksisterer hos leger, som anser at fibromyalgi er i hodet. “Vi har en opplæring som fokuserer på rasjonalitet. Men her har vi ingen grunn eller behandling, legger legen foran hans funksjonshemming,     sier reumatologen Jean-Luc Renevier, veldig klar over syndromet. Fordi fibromyalgi forblir stort sett et mysterium. Det er      “mange forutsetninger”     om opprinnelsen, men      “ingen har bevist sin virkelighet”, sier reumatologen. Det mest forvirrende er at det ikke er noen skade eller betennelse for å forklare denne vedvarende smerten. I radioer er alt normalt. Det vi vet er at hjernen i fibromyalgi ikke tilstrekkelig filtrerer smerten. Verdens helseorganisasjon anerkjenner fibromyalgi siden 1992, sier National Academy of Medicine det er en kamp som må tas seriøst og har utgitt en rapport om politikken i 2010 som er troverdig i flere dokters øyne.

Sykepleieren “sendte meg til et akuttpsykiatrisk sykehus”

I tillegg til mangel på kunnskap,      “er det motvilje mot å ta vare på pasientene, fordi det tar lang tid”,      hevder     Dr.      Renevier. Svaret er ofte laget med (mange) medisiner. Antalgic, derfor, men også antidepressiva. “De gir oss medisiner, men de hører ikke på oss      ,  fordømmer Blandine Bouedo. På grunn av alle disse behandlingene ble leveren alvorlig skadet, selv leger snakket om deres deltakelse. den 

   Behandlinger for fibromyalgi som ikke har markedsføringstillatelse i Frankrike (i motsetning til USA, for eksempel) foreskrives ofte for depresjon, noe som ikke hjelper pasientene til å godta sin situasjon og føle seg anerkjent.

Fibromyalgesika reduseres ofte til ditt syndrom: hvis du har smerte, hvis du har et problem, kan det bare skyldes fibromyalgi. “I nødstilfeller, fra øyeblikket vi sier at vi er” fibro “, tar de ikke lenger vare på oss, de injiserer oss med morfin og lar oss ligge i et hjørne”,      beklager Blandine Bouedo. Hyppig oppførsel, som kan være dramatisk. Carole Robert måtte gå til beredskapsrommet for hjertesykdom, og      “klokka 1:30 overviste sykepleieren meg at hun var psykisk og sendte meg til et akuttpsykiatrisk sykehus. Alle var enige om at det var hodet mitt     . Denne formodede hjertebetingelsen var faktisk atrieflimmer. Noen måneder senere hadde Carole Robert et slag.

Fibromyalgi kan ikke helbredes og en minoritet av pasienter svarer på smertestillende midler. På den annen side testes ikke-medisinske metoder (avslapping, qigong, balneoterapi …) mer og mer. “Vi tenker mindre om smerte, vi har den ånden som er frigjort,”    sier Carole Robert. Det er nettopp grunnen til at Blandine Bouedo snakker om hennes smerter fra fortiden. “Jeg føler meg fortsatt smerte, men jeg lider ikke lenger.” Jeg er ikke på bunnen av brønnen med svarte ideer. ”     Hun tar imot funksjonshemmingen på grunn av hennes syndrom, hun begynte å trene Qigong, med sikte på å skape en forening for personer med kronisk smerte. Hun, som brukte mellom 300 og 400 euro i måneden på medisinering, betaler nå bare 38 euro for sine akupunktursessioner.

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