Fibromyalgi er ikke en ny type sykdom. I 1815 beskrev William Balfour, en kirurg ved University of Edinburgh, fibromyalgi. Over tid har det blitt beskrevet som kronisk revmatisme, myalgi eller fibrositt. I motsetning til sykdommer har syndromer som fibromyalgi ikke en kjent årsak, men de er en gruppe tegn og symptomer som dessverre er til stede samtidig for pasienten. Revmatoid artritt og lupus er også beslektede syndromer.
De fleste symptomer og følelsesmessige problemer forbundet med fibromyalgi er ikke av psykologisk opprinnelse.
Det er ikke en sykdom der “alt er i tankene dine.” I 1987 erkjente American Medical Association at fibromyalgi var en sann fysisk lidelse og en betydelig årsak til funksjonshemming.
Fibromyalgi kan være funksjonshemmende og depressivt, noe som kan forstyrre enklere daglige operasjoner.
-Det du trenger å forstå om meg:
1. Mine smerter:
Det er ikke din smerte, mine smerter. Det er ikke utløst av betennelse. Det vil ikke hjelpe meg å ta leddgikt medisiner. Jeg kan ikke jobbe fordi kroppen min ikke tåler det. Det er ikke smertene som bare forblir i en del av kroppen. Det ligger på skulderen min i dag, men det kan være en fot i morgen, eller kanskje er den borte. Smertene mine blir utløst av signaler som feilaktig når hjernen min, potensielt på grunn av søvnforstyrrelser. Det er ikke veldig godt forstått, men det er ekte.
2. Utmattelsen min:
Ikke bare føler jeg meg veldig sliten. Jeg er veldig utslitt. Jeg vil gjerne være med på fysiske aktiviteter, men det kan jeg ikke. Ikke ta det personlig, vær så snill. Hvis du så meg handle i går, men jeg kan ikke la være å rense hagen i dag, er det ikke fordi jeg ikke vil. Jeg betaler prisen for å stresse musklene utover deres kapasitet.
3. Mine problemer med konsentrasjon:
Alle oss som har fibromyalgi kaller disse problemene “fibro-tåke.” Jeg husker kanskje ikke navnet ditt, men jeg husker ansiktet ditt. Du husker kanskje ikke hva jeg lovet å gjøre for deg, selv om du fortalte meg for bare noen sekunder siden. Problemet mitt har ingenting med alder å gjøre, men det kan henge sammen med søvnforstyrrelser. Jeg har ikke et selektivt minne. Noen dager har jeg ikke engang et kortvarig minne.
4. Min egen kløthet:
Hvis jeg står opp eller løper etter mengden, vil jeg ikke jage deg. Jeg har ikke kontroll over musklene mine til å gjøre det. Hvis du er på stigen bak meg, vær tålmodig. I disse dager skal jeg ta livet og hvert skritt for øyeblikket.
5. Min følsomhet:
Jeg kan ikke være her! Dette kan skyldes visse variabler, for eksempel sterkt lys, veldig støyende eller lite støy, lukt. Fibromyalgi er blitt kalt en “lidelse som gjør alt verre.”
6. Min intoleranse er som følger:
Jeg tåler ikke varmen eller fuktigheten. Hvis jeg er en fyr, skal jeg svette mye. Vel, hvis jeg er en dame, også. Og ikke bli overrasket om jeg går ut av kontroll når det er kaldt. Jeg tåler heller ikke kulden. Den indre termostaten min er ødelagt, og ingen vet hvordan jeg fikser den.
7. Å, min depresjon:
Ja, det er dager hvor jeg foretrekker å ligge i sengen, hjemme eller å dø. Alvorlige smerter er upålitelige og kan utløse depresjon. Din ekte interesse og forståelse kan ta meg ut av avgrunnen.
8. Min stress, min stress:
Kroppen min takler ikke stress godt. Hvis jeg må slutte å jobbe, jobbe deltid eller delegere mine oppgaver hjemme, er det ikke fordi jeg er lat. Daglig stress kan gjøre symptomene mine verre og deaktivere meg fullstendig.
9. Min vekt er som følger:
Jeg kan være overvektig eller tynn. Det var ikke mitt valg, uansett. Kroppen min er ikke kroppen din. Appetitten min blir påvirket, og ingen vet hvordan jeg skal fikse det.
10. Behovet mitt for behandling:
Misunn meg ikke hvis jeg trenger en daglig massasje. Massasje er ikke din massasje. Vurder hva en massasje kan gjøre i kroppen min hvis smertene i beinet mitt forrige uke er det jeg føler i hele kroppen. Massasjen kan være veldig smertefull, men jeg trenger den. Massasje kan hjelpe med jevne mellomrom, i det minste for en stund.
11. Vel, mine gode dager:
Hvis du ser meg smile og jobbe normalt, ikke antar at jeg har det bra. Jeg lider av kroniske smerter og tretthet, som ikke har noen kur. Jeg kunne ha en god morgen, uker eller måneder. Det er faktisk en god morgen som lar meg komme videre.
12. Den individualitet av meg:
Selv de som har fibromyalgi er ikke det samme. Det betyr at jeg ikke kan fortelle deg alle symptomene. Jeg kan ha migrene, smerter i hoftene, skuldrene eller knærne, men jeg har ikke de samme smerter som noen med denne tilstanden.
Jeg håper dette hjelper deg med å forstå meg, men hvis du fortsatt er i tvil om smerte, bokhandelen, biblioteket ditt eller Internett, har de gode bøker og artikler om fibromyalgi.
Forfatterens merknad: Dette brevet er basert på samtaler med kvinner og menn over hele verden med fibromyalgi. Dette er ikke en av de 10 millioner menneskene med fibromyalgi i verden, men det kan hjelpe sunne mennesker til å forstå hvor ødeleggende denne tilstanden kan være. Vennligst ikke ta smerten fra disse menneskene lett. Du vil ikke tilbringe en dag i skoene eller kroppene deres. Fibromyalgi er ikke noe vi velger å ha, men hvis vi gjør det, må vi nå et punkt der vi aksepterer tilstanden som en del av livene våre.
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