As u met ‘n chroniese toestand soos fibromialgie leef, is u moontlik bewus van die frustrerende en ongewenste simptome wat dit kan veroorsaak. Alhoewel daar geen rede is om skaam te wees vir die simptome of newe-effekte wat u ervaar nie, kan dit ‘n verleentheid wees as u breinmis laat vergeet wat u gesê het in die middel van ‘n belangrike werksvergadering, of as skielike pynverligting u laat val. . Die skottelgoed wat u in die kombuis gehou het.
Dit kan moeilik wees om te praat oor die minder gesogte simptome wat fibro kan veroorsaak, maar om eerlik en openlik te wees oor die vele maniere waarop dit ‘n persoon kan beïnvloed, is ‘n belangrike stap om bewus te raak van hierdie ingewikkelde en dikwels siekte. verstaan. . Daarom het ons ons magtige gemeenskap gevra om ‘n paar van die ‘verleentheid’ simptome van fibromialgie wat hulle teëgekom het, te deel, simptome waaroor ons nie gereeld praat nie, maar wat desondanks verdien en erken moet word.
Alhoewel fibro simptome (sowel as sommige van die newe-effekte van medikasie) heeltemal buite beheer kan wees, kan dit moeilik wees om die fisieke, emosionele en kognitiewe effekte wat fibro kan veroorsaak, te hanteer. As u probleme ondervind met die volgende simptome, moet u daarop let dat u nie alleen is nie.
Dit is wat ons gemeenskap vir ons gesê het:
1. Breinmis
‘Die fibro-mis neem die palm weg.’ Daar is niks meer vir my ‘n verleentheid as om met iemand oor die telefoon of met iemand in die algemeen te gesels nie, en om gedurig vulliswoorde te gebruik, want ek kan nie die woorde vind nie. wat ek tydens die gesprek moet uitdruk. Ek gebruik baie post-it-notas en stel onthounotas vir byna alles. – Abeille E.
‘Nie in staat is om te gaan met wat iemand vir jou sê nie, en dan voel dit onbeskof om hulle te vra wat hulle al meer as een keer gesê het, omdat jou brein moontlik van almal praat.’ – Dani S.
‘Sekerlik ‘n breinmis. Dit is so ‘n verleentheid om die draad van my gedagtes in die middel van die sin te verloor en nie ‘n intelligente gesprek te kan voer of iets te vergeet wat iemand my vertel het nie. Dit is aaklig. “- Molly S.
2. Oormatige sweet.
“Vir my dink ek dit is oormatig sweet sonder enige duidelike rede. Die onvermoë om u liggaamstemperatuur te reguleer, is frustrerend. – Rachel P.
Sweet! Die minste beweging is moontlik en ek word oorverhit en sweet drup op my gesig. Ek is oral by die werk en is altyd aan die brand. Dit is baie koud buite en die ander meisies het ‘n ekstra verwarmer langs hulle, en hier sterf ek met ‘n waaier! “- Christina K.
‘As 27-jarige vrou met fibromialgie en endometriose, ly ek gereeld aan baie warm flitse. Dit is ‘n verleentheid om u klere skielik aan te trek of te verwyder om die ongemak te probeer verlig. – Emily G.
3. Moet planne kanselleer
‘Die verleentheid is om die planne te kanselleer, want ek voel nie goed genoeg om weg te gaan nie.’ Laastens noem hulle jou “hierdie persoon” “- Lauren H.
‘Dit is vir my ‘n verleentheid om projekte sonder kennisgewing te kanselleer. Pyn en / of moegheid is belangriker as wat ek op sekere dae kan hanteer en ek moet iets kanselleer wat ek regtig wou doen. – Jan SP
4. Oordryf sensories
‘As daar te veel mense op dieselfde tyd praat of te veel geraas, is my kop oorlaai en is ek so ontsteld dat dit kan ontplof. Dit is baie moeilik om weg te steek wat my bekommer. – Annie T.
‘Een ding wat ek nie kan doen nie, is om na te kyk’ Die prys is reg. ‘ Daar is te veel geraas en geskree. En ek kom op ‘n plek waar ek dit nie vantevore kan sien nie. “- Terri S.
5. Lae energie
‘Soms het ek nie genoeg energie om eenvoudige dinge te doen nie, soos om te stort of om aandete vir my kinders of selfs ‘n paar dae voor te berei. ” Ek kan nie uit die bed klim om dinge met my kinders te doen nie. – Skye L.
‘Die totale gebrek aan energie. Ek verstaan dat dit my fibro is. Ander sien net lui mense. Michelle P.
“Moegheid. As dit tref, moet ek onmiddellik gaan sit, maak nie saak waar ek is nie. “- Lisa T.
6. Skommelings in gewig.
‘Ek is moeg vir my gewigstoename. Ek kan dit nie afskud nie en is verleë om mense te sien wat my al voorheen geken het. Leah M.
7. gastro-intestinale simptome
”Maag-intestinale afwykings. Ek voel nog steeds ongemaklik om met my dokters te praat oor my simptome van die spysverteringskanaal, of dit nou naarheid, hardlywigheid of diarree is. “- Mattie M.
‘Ek het diarree. My maagprobleme bemoei my lewe voortdurend. Vir die laaste danksegging moes ek gaan sit en kyk hoe almal eet. Ek was te bang om myself te eet as gevolg van diarree. Dit hou nooit op nie. Soms gaan ek dae sonder om te eet. “- Melissa G.
“IBS [prikkelbare dermsindroom] en al die skoonheid wat daarmee gepaard gaan . Ek moet sekere kosse vermy net omdat ek baie sensitief geword het vir hierdie kosse. Nie net as gevolg van die verleentheids simptome nie, maar ook weens die krampe, hoofpyn en epidemies wat gepaard gaan met die verbruik van ‘slegte kos’ ‘- Ashley A.
8. Muskuloskeletale pyn
“Rug- en beenpyn”. Ek kan nie langer as 30 minute op ‘n slag sit, staan of loop nie. Ek beweeg gedurig as ek staan of as ek na iets moet kyk. Mense dink jy is lui, maar my bene is letterlik verlate! “- Meena N.
‘Ek wil graag aktief wees en saam met vriende plekke soos die dieretuin of pretparke besoek. Maar as ek baie stap, is dit ‘n verleentheid om pouses te neem as gevolg van my knieë en heupe. Op 23-jarige ouderdom kan mense op my ouderdom gespot word oor my behoefte om te bedank. Soms vra hulle my vir nuuskierige voorkoms van ouer mense of opmerkings soos “jy is te jonk om hierdie pyn te hê.” Gewoonlik probeer ek so hard as moontlik werk, maar die pyn word net erger as ek uiteindelik ‘n grot maak en ‘n blaaskans neem. Shelby C.
9. Uitslag / plooie
‘Die rooi uitslag op my nek gesien vanuit die lug. Op ‘n stadium is hy net op een plek, soms is dit alles verby. As u op ‘n plek is, dink mense soms dat ek ‘n hik is. Dit is ‘n bietjie verleentheid. “- Krystina KF
10. Balansprobleme.
‘My balans. Dit het erger geword en ek het geval terwyl ek myself kon red; Die een voor sy huis in sy blombedding was die ergste sedert sy verbasing (ek weet regtig nie wat ek het nie). “- Lisa TWEEDE.
11. Gevoeligheid vir reuke.
‘My swak onverdraagsaamheid teenoor hitte, reuke en rook. As ek gepas aantrek en ‘n sosiale byeenkoms wil bywoon, begin die gevoel van rusteloosheid met intense sweet en duiseligheid as gevolg van die ‘hitte’ wat my liggaam ervaar. Voeg die reuk of rook by die kombuis, tuis of in die restaurant; Die braai is my geswore vyand. Ek wil dit geniet, maar my liggaam weier en ander sien my as ‘n partytjie of net te veeleisend. “- Vee Vee Y.
12. om koud te wees
‘Om so koud te wees. Die hele tyd. Ek woon in Texas. Gedurende die somer dra ek truie en dra altyd ‘n baadjie oral waar ek gaan. Dit is meer as 100 grade, dus is lugversorging oral geïnstalleer en ek probeer genoeg opwarm om goed te voel. “- Kristi R.
13. Spierkontraksies en spasmas.
Spasmas. Byna konstante bewegings, waarvan sommige groot is, en mense kyk grasieus na jou, omdat jy nie jou eie liggaam kan beheer nie. – Rhian S.
My voete en bene sal bewe of saamtrek. Ek skree of skree gereeld as dit gebeur, want dit is seer. Mense kyk na my en maak my ongelooflik selfbewus. Ek kan dit nie beheer nie ”- Elyse B.
‘Willekeurige spasmas in my rug wat my verhinder om te loop terwyl ek in die middel van ‘n winkel is. Ek hou nie daarvan om die middelpunt van aandag te wees nie en niks skree “kyk na my nie” asof jy nie kan beweeg nie. Megan m.
‘Ek het lukrake spierspasmas. Dit laat my baie dinge verloor. “- Danika S.
14. het ‘snuif’
Konstante inaseming / hoes / droë mond veroorsaak deur my medikasie. Werklik ongemaklik vir sommige plekke en hoes en slukkies. Toe my suster haar baba het, hou ek haar in my arms en drink. Sommige het gedink dat sy siek is en ‘n pasgebore baba omhels! Moenie! Jammer, net my medisyne laat my so klink! “- Garnet D.
15. sensitiwiteit vir aanraking
‘As iemand my gaan aanraak, kom ek altyd terug, want ek weet dit sal seermaak.’ – Amanda P.
‘As ek dit vir mense moet sê, moet u my asseblief nie in u arms neem nie en nie totsiens sê nie, want dit maak te veel seer.’ – Audrey M.
16. spierswakheid
‘Verlies aan greep en beweging in die hand, wat veroorsaak dat baie kolke val. Terwyl ek inkopies doen, huil ek half van frustrasie, en hoef my nie te bekommer oor nie ‘n blikkie of ‘n bottel drankie kan oopmaak nie. “- Ann W.
‘As ek ‘n uitslag het, word my spiere styf en swak. Ek begin vreemd loop en dit raak baie moeilik om die deure oop te maak, af te buig, ens. Mense sal baie bekommerd wees en vra wat aangaan, hulle het my net gesien en ek het ‘n dag of ‘n uur gelede goed gegaan. Dit is vir hulle skokkend en byna onmoontlik om te verduidelik. Dan boom, een dag, een week. Niks later lyk dit my gaan goed nie. – Katrina R.
17. Moeilikheid om te praat.
” Ek kan nie praat nie. Ek het die woorde vergeet, daaroor gestruikel, woorde gesê wat nie sin maak nie. Wat erger is, is dat ek met kinders werk en dat my ouers soms na my kyk en so dom voel dat ek my probleme nie sonder probleme kan uitdruk nie. Dit het my 15 minute geduur, want ek moes die verkeerde en verkeerde woorde skryf. “- Marissa E.
‘Ek meng die woorde en dit kom regtig vreemd uit! Mense kyk my vreemd aan, want dit lyk soms vir my [dom]. Die fibro-mis is die slegste! Ek het die aartappels een keer herhaal in plaas van die oliebolle. So verleë. – Eloise T.
‘Breinmis … as ek nie die woorde kan onthou nie. U kan na iets kyk sonder om te kan onthou wat dit genoem word. Dit is net daar op die punt van my tong, maar die woorde kom nie. – Paula D.
18. inkontinensie
Inkontinensie! Dit is super irriterend, ek moet die hele tyd onderbroek dra. En aangesien dit nie genoeg is nie, het ek lukraak krampe in die blaas. Soos skielik en nêrens, moet my blaas kramp en ek moet onmiddellik vertrek. Dit het ongelukke veroorsaak. Morgan V.
Eintlik kan ek elke 15 minute urineer. Ek het gedink dit is net ek, ek het nie geweet dit is as gevolg van fibro nie! Paduitstappies is ab ****! – Shelby LS
19. intense emosies
‘As ek regtig sleg is, word ek kwaad, vir die pyn, vir myself en vir ander.’ Ek probeer die mense met wie ek werk op ‘n slegte dag van pyn waarsku dat as ek huil of kwaad word, dit nie hulle is nie, is dit pyn. – Trish G.
20. Reageer op skielike pyn
‘Die verleentheids simptoom is skielike, aanhoudende pyn wat veroorsaak dat ek my uitdrukking outomaties verander en ophou om te doen wat ek doen, hetsy by die werk of saam met my gesin. As dit gebeur, merk almal die skielike verandering op en vra hulle dan wat aangaan, want ek lyk altyd ‘fiks’ of ‘gesond’. – Katherine L.
‘Pyn as gevolg van spontane houe soms aftakelend.’ Ek kan ‘n baie goeie dag hê en groot pyn kom nêrens nie, wat my laat bewe of skree van pyn. – DeAnna AC
‘As my liggaam skielik toemaak, of as ek nie van die rusbank af kan opstaan sonder om ‘n verleentheid te maak nie. Ek wonder dikwels of mense besef hoeveel moeite dit is om hierdie dinge te doen. ‘Terri sa
21. uitputting
Uitputting. Ek kan nie lank iets doen nie, of ek word so moeg dat dit seer maak om my oë oop te hou. Ek moes my ure sny om terug te kom werk en het dit skaars gedoen. Ek moet ‘n middagslapie kry om deur die dag te kom. “- Kirsten MR
Uitputting en isolasie. Fibromialgie veroorsaak groot moegheid, en op my beurt is ek ingeperk omdat ek skaam is dat ek nie dinge soos vriende en familie kan ontmoet nadat ek heeldag gewerk het nie. ”- Koroleva V.
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