Wie lijdt aan fibromyalgie: “Het is net alsof je 20 eetlepels energie hebt om elke dag te gebruiken.”

Kunstenaar Anjie Mailey deelt haar ervaring met de onbegrepen chronische aandoening die miljoenen mensen pijn doet.

Fibromyalgie is een chronische aandoening op de lange termijn die miljoenen mensen pijn doet, maar is weinig bekend en weinig onderzocht, zegt Jo Waters

De beslissing van Kirsty Young om afgelopen zomer een pauze in te lassen uit de records van Desert Island vanwege haar strijd tegen fibromyalgie, zette de slecht begrepen toestand in het middelpunt van de belangstelling.

Maar de presentator van BBC Radio is niet de enige bekende naam die op lange termijn tegen deze ziekte vecht.

Lady Gaga is een ander slachtoffer van hoog profiel fibro. De zanger was zo getroffen dat ze vorig jaar de laatste 10 datums van een wereldtournee moest annuleren.

En acteur Morgan Freeman heeft ook gesproken over hoe om te gaan met de pijn van het hele lichaam voor de aandoening.

Een recent rapport van het Parlement schat dat bijna twee miljoen Britten fibromyalgie hebben, wat waarschijnlijker is tussen 20 en 50 jaar. En vrouwen hebben zeven keer meer kans om te worden getroffen dan mannen.

Symptomen zijn onder meer verhoogde gevoeligheid voor pijn, vermoeidheid, spierstijfheid, slaapproblemen, cognitieve en geheugenproblemen, hoofdpijn en prikkelbare darmsyndroom.

Kirsty Young besloot afgelopen zomer een pauze in te nemen van records uit Desert Island als gevolg van haar strijd met fibromyalgie.

Dan zijn er spelden en naalden, een brandend gevoel in de huid, krampen in de benen, rusteloze benen, tintelingen en depressie. Pijn kan overal of in specifieke gebieden worden ervaren, en dit kan veranderen.

‘De oefening zorgde ervoor dat ik me weer goed voelde’

Anjie Mailey, 49, een kunstenaar en een werknemer met speciale behoeften in Oost-Londen, heeft al 15 jaar fibromyalgie:

Mijn symptomen begonnen met ongebruikelijke pijntjes en kwalen; Als iemand me licht aanraakte, voelde het alsof ze me hadden geraakt.

Ik was uitgeput, alsof mijn spieren geen energievoorziening hadden en mijn brein vertraagde. Ik zou de hele tijd dingen vergeten. Later hoorde ik dat dit fibro-mist werd genoemd.

Het kostte hem ongeveer drie jaar om een ​​diagnose te stellen. Ik ging naar de huisarts en ik had tests om ziekten zoals lupus en multiple sclerose uit te sluiten, maar ze waren allemaal negatief. Uiteindelijk werd ik verwezen naar een reumatoloog die fibromyalgie diagnosticeerde.

Mijn doorbraak kwam toen ik een zelfmanagementcursus in fibromyalgie aanraadde in het Great Ormond Street Hospital in Londen, waar we groepstherapie kregen, zachte trainingslessen kregen en werd geleerd hoe de symptomen te behandelen.

De oefening was echt het laatste wat ik voelde, omdat ik te zwaar was, ik was niet in vorm en met zoveel pijn gebruikte ik twee stokken, maar ik besloot om naar een sportschool te gaan.

Anjie Mailey (afbeelding: onbekende verzameling)

Het deed eerst pijn, maar ik nam pijnstillers en ging door. Het deed de volgende dag pijn, maar beetje bij beetje verhoogde ik mijn spierkracht en mijn weerstand, en mijn spieren deden minder pijn.

Al snel was ik fit genoeg om karate en vrouwen boksen te doen. Ik woonde ook een afslankclub bij en ik verloor zeven stenen.

Ze vertelden me dat je 20 eetlepels energie kunt gebruiken in een dag en elke activiteit kost je een van hen.

De uitdaging is om te plannen hoe je die energie gaat besteden. Mijn pijn is er nog steeds, maar ik heb geleerd om ermee om te gaan en de controle nu te nemen.

Wat veroorzaakt het?

De toestand wordt nu herkend als een storing van het pijndrempelsysteem. Er wordt gedacht dat er een fout ontstaat in de manier waarop pijnsignalen worden verwerkt, hoewel het nog niet duidelijk is wat dit triggert.

Studies met behulp van hersenbeelden hebben steeds meer aanwijzingen gevonden voor betrokkenheid van het centrale zenuwstelsel.

“Patiënten worden te gevoelig voor externe stimuli en hun pijndrempel daalt onmiddellijk, dus het feit dat ze lichtjes aanraken, kan zeer pijnlijk zijn”, legt dr. Rod Hughes, reumatoloog-specialist bij St. Peter’s Hospital, uit. in Chertsey, Surrey.

“Fibromyalgie wordt vaak gezien als het gevolg van een of andere vorm van stressvolle gebeurtenis, zoals een operatie, een ongeluk of een groot emotioneel trauma, zoals een echtscheiding.

“Vaak was er een kritiek punt van stress en patiënten kunnen een voorgeschiedenis van migraine of IBS-achtige symptomen hebben.”

Moeilijkheden bij de diagnose.

Omdat zoveel symptomen overlappen met andere aandoeningen en er geen definitieve diagnostische tests zijn, kan het enige tijd duren, meerdere jaren, in sommige gevallen, om een ​​diagnose te krijgen.

Hazel Borland van Fibromyalgia Action UK van het Verenigd Koninkrijk, de grootste liefdadigheidsorganisatie van fibro in het Verenigd Koninkrijk, zegt dat als patiënten een vriendelijke arts kunnen zien of niet, dit te wijten is aan hun postcode.

“Veel patiënten vertellen ons dat hun symptomen verdwijnen of dat ze te horen krijgen dat ze depressief zijn”, zegt ze.

“Hoewel dat misschien waar is, zijn ze vaak depressief vanwege hun fibro-symptomen.

“Patiënten melden ook dat zij van de ene pijler naar de andere zijn gegaan tussen artsen en specialisten, en er zijn slechts een handvol klinieken die gespecialiseerd zijn in fibrose.”

Ze voegt eraan toe: “De impact van fibromyalgie wordt onderschat. Als mensen zich niet gesteund voelen, kan dit leiden tot depressie en isolement en zelfs tot zelfmoord. “

Hazel beveelt aan een second opinion te vragen of te vragen om een ​​verwijzing naar een centrum gespecialiseerd in fibromyalgie …

174 thoughts on “Wie lijdt aan fibromyalgie: “Het is net alsof je 20 eetlepels energie hebt om elke dag te gebruiken.”

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