Simona het geleer om te leef met ‘n toestand wat te dikwels verkeerd verstaan word, fibromialgie. Hier is sy getuienis versamel deur ons joernalis.
Fibromialgie het ‘viral’ geword in die geselskap sedert die sangeres Lady Gaga onthul het dat sy weens die pynsindroom die konsert moes kanselleer. Dit is egter vir die meeste mense nog onbekend. Om hierdie rede gaan die Italiaanse vereniging van fibromialgie-sindroom voort om te veg vir die sosiale erkenning van hierdie patologie wat tussen 2 en 3 miljoen Italianers raak (9 uit 10 is vroue). Tot op hede het Europese lande fibromialgie by die chroniese pynlike patologieë ingesluit, maar nie Italië nie, waar die pasiënt nie geregtig is op hulp nie omdat dit nie as ‘n ongeskiktheid beskou word nie.
Hieronder kan u die verhaal lees van Simona Villa ( op die foto hierbo ), ‘n pasiënt wat ons vertel het hoe sy met hierdie moeilike diagnoseerbare siekte saamleef en hoe sy daarin geslaag het om dit te omskep in ‘n soort bondgenoot wat haar waarsku as sy oordryf.
SIMONA SE VERHAAL
Dit was einde April 2011, ek was 46 jaar oud en ek het ‘n vakansie saam met my gesin op die strand deurgebring. Ek was kalm omdat ek pas die pad gevat het wat ek wou hê: om ‘n kenner te word vir refleksologie in die gesig. ‘N Veeleisende werk, selfs uit fisiese oogpunt. Maar die poging het my nie bang gemaak nie, my nuwe professionele rol het my so bevredig dat ek dit selde gevoel het. Om hierdie rede was ek verbaas toe ek kort voor my vertrek uitgeput begin voel het, sonder krag. Ek onthou die moeite om die sakke voor te berei en sekere bewegings te doen. Ek het nog nooit sulke uitputting ervaar nie!
Slegte vakansie
Die motorrit was baie stresvol: ek het poste gehad , my bene was styf en was bang vir ‘n koorsagtige oplewing. Toe ek die bestemming bereik, het ek die klere en die res van die bagasie gereël.
Tot my verbasing het die fisiese ongemak, toe ek in die bed was, toegeneem eerder as afgeneem: ek kon nie beweeg nie, het hoofpyn gehad, ‘n ongewone maagpyn en selfs geselsies was uitputtend. Om nie eens te praat van my oë wat ek nie kon oophou nie, was my gevoel van uitputting soveel. Soms het ek selfs gevoel dat my gedagtes vertroebel is.
Na drie dae van geen verbetering het ek besluit om my geneesheer in die primêre sorg te skakel, wat paracetamol voorgestel het. Toe ek terugkom, moes ek egter ‘n MRI op my kop gehad het. Nodeloos om te sê dat die ontstekingsremmend geen effek gehad het nie, en ek het my ernstig begin bekommer – wat de hel het dit nodig gehad om my so sleg te laat voel? Op die vyfde dag van vakansie het ek ‘n oomblik van verligting gekry en saam met my seun en my man die son op die strand begin geniet. Ek het die ongemak al vergeet toe dit weer ná twee dae sterker teruggekom het as voorheen.
Eksamens? Almal negatief
Terug in Milaan het ek bloedtoetse en ‘n MRI gedoen wat niks abnormaal laat blyk het nie. Intussen het die spierongemak en pyn weer verdwyn. Ek het teruggegaan werk toe en geleidelik het die bekommernis heeltemal verdwyn totdat ek vergeet het wat gebeur het.
Maar na ‘n paar weke het ek weer sleg begin voel. Die ‘ krisisse ‘ verskyn en verdwyn met tussenposes, sommige was van korte duur, ander van ‘n paar dae. Die huisarts het nie meer geweet wat hy vir my moes sê nie. Ek het dus alles met gelate geduld verduur. Ek het geleer om die kwale te aanvaar, wat soms weer na maande se berusting verskyn het.
Ek het elkeen van my saamtrek spiere “gevoel” en herken, en besef dat my ongelooflike liggaam bewus is. Die ongemak was natuurlik daar en sy kon niks fop nie. Die totale gebrek aan energie het my nie regtig rustig laat rus nie; ek kon my nie toespits op die lees van ‘n boek nie, soms het ek gelyk of ek dubbel gesien het en dikwels was dit vir my moeilik om die toesprake te volg. Takikardie was ‘n voortdurende maatskappy, en die oggend opstaan was ‘n groot maatskappy. In die donkerste tydperke het die pyn my ook oral getref: in die gewrigte, in die rug, selfs in die tande, neus en oë. Ek het baie gesweet en my bene het verstyf asof hulle in ‘n rolverdeling was, hulle kon my nie meer vashou nie.
Die ontmoeting met die rumatoloog.
In die lente van 2017 het die aanvalle al hoe nader en verwoestender geword en moes ek my werk beëindig. Nie net dit nie: geen sosiale lewe meer nie, nie eens ‘n film met my man nie. Uiteindelik, in Junie, het ek die jaarlikse ondersoek na my ginekoloog gegaan, hom vertel van my nog ongenoemde ongemak, en hy het nog bloedtoetse voorgeskryf.
Die resultaat was steeds negatief, en hy het my aangeraai om met een van sy rumatoloë kontak te maak. Nadat hy berge bewyse nagegaan en my lank geluister het, kyk hy my in die oë en sê: ‘U het waarskynlik fibromialgie.’ Ek het gedink: nou, uiteindelik, ‘n diagnose, kan ek wag vir terapie. Die dokter het aan my verduidelik dat daar geen kliniese toetse is wat die siekte kan bevestig nie, en dat die diagnose dikwels deur uitsluiting gemaak word.
Ek het ontdek dat hierdie sindroom, wat pyn en styfheid in die spiere, senings en ligamente behels en gepaard gaan met diep astenie, ‘n onbekende oorsprong het. Dit kan veroorsaak word deur ‘n stresvolle gebeurtenis of fisiese trauma, maar daar is nog steeds onbeantwoorde vrae. Baie kenners meen dat daar ‘n onderliggende toestand van angs of depressie is. Maar dit is duidelik dat diegene wat in hierdie toestande leef, nie van vreugde spat nie en in ‘n situasie van konstante sielkundige onstabiliteit verkeer.
Die gemak van assosiasie.
Fibromialgie is ‘n verkeerde siekte en daarom is dit noodsaaklik om nie alleen te voel nie. Om hierdie rede het die rumatoloog voorgestel dat ek met AISF, die Italiaanse vereniging van fibromialgie-sindroom, skakel. Danksy hulle het ek ook die dokter gekry wat my behandel. Vandag neem ek pynstillers en ‘n medikasie om die kwaliteit van my slaap te verbeter, ek strek 30 minute per dag en gebruik ontspanningstegnieke wat my help om spierspanning vry te stel.
Die sielkundige aspek is ook belangrik, en daarom vertrou ek myself op aan die gedragssielkundige van die Vereniging. Bietjie vir bietjie het ek my werk teruggekry en weer rustig begin leef. Ek het ook lewensreëls aangeneem: oordoen dit byvoorbeeld nie, maar leer moegheid meet, nie alles wil doen nie, maar om besluite te neem wat met ‘n skeut gesonde selfsug eers goed vir my is. Kortom, ek het fibromialgie omskep in ‘n soort vriend wat my waarsku as ek dit oordoen. Dan stop ek en begin na my liggaam luister.
SORG MOET AANGEPAS WORD
Fibromialgie-sindroom manifesteer deur so ‘n wye verskeidenheid simptome dat daar geen enkele terapie is nie. Dit moet aangepas word volgens die klagtes wat deur elke pasiënt gerapporteer word. “Die terapeutiese benadering moet multidissiplinêr wees en gebaseer wees op drie tipes intervensie: liggaamlik-rehabilitatief, sielkundig en farmakologies”, verduidelik dr. Alberto Batticciotto, spesialis in rumatologie en mediese direkteur van Asst Settelaghi van die Varese Circolo-hospitaal, sowel as ‘n lid van die raad van direkteure van die Italiaanse vereniging van fibromialgie-sindroom. ‘Daar is getoon dat die molekules effektief is (en wat in die Verenigde State deur die FDA goedgekeur is vir hierdie toestand), is duloxetine, pregabalin en milnacipram wat in staat is om pynmodulasie in te werk.
Die gebruik van spierverslappers, angswerende middels en pynstillers kan ook nuttig wees, ” gaan die kenner voort. Oefen gereelde fisieke aktiwiteit is noodsaaklik. «Die fisieke rehabilitasie-benadering is een van die pilare van die terapie: dit verminder pyn en spierkontraksie. Die beste oefensessie? Joga, strek, Thai chi chuan en al die dissiplines wat die spiere verleng, oefen spesifiek die seerste. Dit is ook belangrik om gewoond te raak aan stap, fietsry en swem.
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