22 ‘Schandelijke symptomen’ van fibromyalgie waar we het niet over hebben

Als u met een chronische ziekte leeft, zoals fibromyalgie, bent u mogelijk te bekend met de frustrerende en ongewenste symptomen die het kan veroorzaken. Hoewel er geen reden is om je te schamen voor eventuele symptomen of bijwerkingen die je ervaart, kan het nog steeds beschamend zijn wanneer de hersenmist je doet vergeten wat je zei in het midden van een belangrijke werkvergadering, of een plotselinge uitbarsting van pijn je doet vallen. gerechten die u in de keuken bewaarde.

Hoewel het misschien moeilijk is om te praten over de minder glamoureuze symptomen die fibro kan produceren, is eerlijk en open zijn over de vele manieren waarop het iemand kan beïnvloeden een belangrijke stap om bewust te worden van deze complexe en vaak verkeerd begrepen toestand. Daarom hebben we onze machtige gemeenschap gevraagd om enkele van de “gênante” symptomen van fibromyalgie die ze hebben ervaren te delen, symptomen waar we misschien niet vaak over praten, maar die toch erkenning en begrip verdienen.

Hoewel de symptomen van fibro (evenals sommige bijwerkingen van medicatie) volledig buiten uw controle kunnen zijn, kan het een uitdaging zijn om om te gaan met de fysieke, emotionele en cognitieve effecten die fibro kan veroorzaken. Als u problemen heeft met een van de volgende symptomen, weet dan dat u niet de enige bent.

Dit is wat onze community ons heeft verteld:

1. Hersenmist

“De  mist Fibro neemt de palm”. Er is niets meer schandelijks voor mij dan iemand aan de telefoon te praten, of eigenlijk iedereen in het algemeen, en constant invuloegwoorden te gebruiken omdat ik moeite heb met het vinden van de woorden die ik tijdens het gesprek moet overbrengen. Ik gebruik veel Post-it-notities en stel herinneringen in voor bijna alles. “- Bee E.

”  Niet in staat zijn om te verwerken wat iemand je vertelt en dan onbeleefd lijken om te vragen wat ze meer dan eens hebben gezegd omdat je hersenen misschien wartaal praten.” – Dani S.

”  Absoluut hersenmist. Het is zo schandelijk om mijn gedachtegang midden in de zin te verliezen en niet in staat te zijn een intelligent gesprek te onderhouden of iets helemaal te vergeten dat iemand mij heeft verteld. Het is verschrikkelijk. “- Molly S.

2. Overmatig zweten

”  Volgens mij is het overdreven zweten zonder duidelijke reden. Het onvermogen om de temperatuur van je eigen lichaam te regelen is frustrerend. “- Rachel P.

”  Zweten!  De minste hoeveelheid beweging en ik ben oververhit en het zweet druipt langs mijn gezicht. Ik ben overal op het werk en brand altijd. Het is erg koud buiten en de andere meisjes hebben een extra kachel naast hen en hier ben ik stervende aan een fan! “- Christina K.

“Als een 27-jarige vrouw met fibromyalgie en endometriose lijd ik vaak aan erg slechte opvliegers. Het is beschamend om plotseling te gaan waaien of bepaalde kleding uit te doen in een poging om ongemak te verlichten. “- Emily G.

3. Noodzaak om plannen te annuleren

”  Het meest schandelijke is dat ik de plannen moet annuleren omdat ik me niet goed genoeg voel om te vertrekken. Uiteindelijk bestempelen ze je als ‘die persoon’ “- Lauren H.

“Ik  vind het beschamend om plannen zonder veel opzegtermijn te moeten annuleren. De pijn en / of vermoeidheid zijn meer dan ik enkele dagen kan verdragen en ik moet iets annuleren dat ik echt wilde doen! “- Jan SP

4. Overdrive sensorisch

”  Als er te veel mensen tegelijk praten of te veel lawaai, gaat mijn hoofd overbelast en ik raak zo opgewonden dat het kan ontploffen. Het is erg moeilijk om te verbergen hoe het mij beïnvloedt. “- Annie T.

”  Een ding dat ik niet veel meer kan doen, is kijken” De prijs is goed “. Er is teveel lawaai en geschreeuw. En ik ga naar waar ik het gewoon niet kan zien zoals vroeger. “- Terri S.

5. Lage energie

”  Soms heb ik niet genoeg energie om eenvoudige dingen te doen, zoals douchen of het avondeten voorbereiden voor mijn kinderen of zelfs maar een paar dagen. Ik kan niet uit bed komen om dingen met mijn kinderen te doen. “- Skye L.

“Het complete gebrek aan energie. Ik begrijp dat het mijn fibro is. Anderen zien gewoon lui. “Michelle P.

”  Vermoeidheid. Als het toeslaat, moet ik onmiddellijk gaan zitten, ongeacht waar ik ben. “- Lisa T.

 

6. Gewichtsschommelingen

“Ik ben moe van mijn gewichtstoename. Ik kan het niet afschudden en ik schaam me als ik mensen zie die me eerder kenden. “Leah M.

7. Gastro-intestinale symptomen

”  Gastro-intestinale problemen. Ik voel me altijd ongemakkelijk als ik mijn artsen vertel over mijn gastro-intestinale symptomen, of het nu om misselijkheid, constipatie of diarree gaat. “- Mattie M.

”  Ik heb diarree. Mijn maagproblemen beïnvloeden mijn leven voortdurend. Deze Thanksgiving uit het verleden moest ik gaan zitten en kijken hoe iedereen at. Ik was te bang om mezelf te eten vanwege diarree. Het stopt nooit. Soms ga ik dagen zonder eten daarom. “- Melissa G.

”  IBS [irritable bowel syndrome] en al het mooie   dat daarbij hoort   . Ik moet bepaalde voedingsmiddelen vermijden alleen omdat ik zo gevoelig voor ze ben geworden. Niet alleen voor de pijnlijke symptomen die het met zich meebrengt, maar ook voor krampen, hoofdpijn en uitbraken die gepaard gaan met de inname van ‘slecht voedsel’ “- Ashley A.

8. Musculoskeletale pijn

”  Rug- en beenpijn.” Ik kan niet meer dan 30 minuten per keer zitten, staan ​​of lopen. Ik ben constant in beweging als ik sta of ik moet ergens over buigen. Mensen denken dat je lui bent, maar mijn benen willen letterlijk opgeven! “- Meena N.

”  Ik hou van actief bezig zijn en het bezoeken van plaatsen zoals de dierentuin of de pretparken met vrienden. Maar als ik in een omgeving ben waar ik veel loop, is het beschamend om pauzes te moeten nemen vanwege mijn knieën en heupen. Op de leeftijd van 23 kunnen mensen van mijn leeftijd last hebben van mijn behoefte om te stoppen met roken, en soms vragen ze me nieuwsgierige blikken van oudere mensen of opmerkingen als “je bent te jong om die pijnen te hebben”. Meestal probeer ik zo hard mogelijk te werken, maar dat maakt de pijn alleen maar erger wanneer ik eindelijk een grot maak en een pauze neem. “Shelby C.

9. Uitbarstingen / Bijenkorven

”  De rode uitslag in mijn nek vanuit de lucht. Op een gegeven moment is het slechts op één plaats, soms is alles voorbij. Als je ergens bent, denken mensen soms dat ik een hikkey heb. Het is een beetje gênant. “- Krystina KF

10. Evenwichtsproblemen

”  Mijn balans. Het is erger geworden en ik ben gevallen toen ik mezelf had kunnen redden; degene die buiten het huis van een vriend op haar bloembed lag, was het ergst sinds ze verrast was (ik weet echt niet wat ik heb). “- Lisa SECOND.

11. Gevoeligheid voor geuren

”  Mijn slechte intolerantie voor warmte, geuren en roken. Als ik me netjes kleed en verlang naar een sociale bijeenkomst, begint het gevoel van ongemak met intens zweten en duizeligheid als gevolg van de ‘hitte’ die mijn lichaam waarneemt. Voeg de geur of rook van een keuken toe, thuis of in een restaurant; de barbecue is mijn aartsvijand. Ik wil genieten, maar mijn lichaam weigert en anderen zien mij als een partijpoeper of gewoon te veeleisend. “- Vee Vee Y.

12. Je koud voelen

”  Omdat het zo koud is. Altijd. Ik woon in Texas. Tijdens de zomer draag ik truien en moet ik altijd een jas dragen waar ik ook ga. Het is meer dan 100 graden, dus elke plaats heeft de AC ingesteld en ik probeer mijn handen voldoende op te warmen om in te voelen “- Kristi R.

13. Spiertrekkingen en spasmen

”  Spasmen. Bijna constante trilling, waarvan sommige   enorm zijn   en mensen je met gratie aankijken, omdat je je eigen lichaam niet kunt beheersen. “- Rhian S.

”  Mijn voeten en benen zullen trillen of samentrekken. Ik zal vaak schreeuwen of huilen als het gebeurt omdat het pijn doet. Mensen kijken en maken me ongelooflijk zelfbewust. Ik kan het niet controleren. “- Elyse B.

”  Willekeurige rugspasmen die me niet in staat stellen te lopen terwijl ik in het midden van een winkel ben. Ik hou er niet van om het middelpunt van de aandacht te zijn en niets roept naar me “kijk naar mij” alsof je niet kunt bewegen “. Megan M.

”  Ik heb willekeurige spierspasmen. Het maakt me veel dingen los. “- Danika S.

14. Heb de “sniffles”

”  De constante inademing / hoest / droge mond veroorzaakt door mijn medicijnen. Echt ongemakkelijk voor bepaalde plaatsen en hoesten en nippen. Toen mijn zus haar baby had, hield ik haar vast en nipte, en sommigen dachten dat ze ziek was en een pasgeboren baby knuffelde! Niet doen! Het spijt me, alleen mijn medicijnen laten me zo klinken! “- Granaat D.

15. Aanraakgevoeligheid

”  Wanneer iemand me gaat aanraken, trek ik me altijd terug omdat ik weet dat het pijn zal doen.” – Amanda P.

”  Als ik mensen moet vertellen, knuffel me dan niet of zeg gedag, want het doet te veel pijn.” – Audrey M.

16. Spierzwakte

”  Verlies van grip en beweging in mijn hand dat resulteert in een groot aantal gevallen flacons. Terwijl ik aan het winkelen ben, blijf ik midden in mijn frustratie huilen, niet bezorgd als ik een blikje of een flesje drank niet kan openen. “- Ann W.

”  Als ik huiduitslag heb, worden mijn spieren stijf en zwak. Ik begin raar te lopen en het wordt heel moeilijk om deuren te openen, bukken, enz. Mensen zullen zich veel zorgen maken en vragen wat er gebeurt, ze hebben me net gezien en ik was in orde een dag of een uur geleden. Het is schokkend voor hen en bijna onmogelijk uit te leggen. Boem dan, één dag, één week. wat het ook later is, het lijkt me goed. “- Katrina R.

17. Moeilijk spreken

”  Niet kunnen praten. Ik vergat de woorden, ik struikelde over hen, ik zei woorden die niet logisch zijn. Wat erger is, is dat ik met kinderen werk en dat ouders me soms aankijken en ik voel me zo dom dat ik mijn gedachten niet zonder problemen kan overbrengen. Gewoon schrijven kostte me 15 minuten omdat ik terug moest gaan en woorden moest herschrijven die verkeerd waren gespeld of zinloos waren. “- Marissa E.

”  Ik mix woorden en het komt heel raar uit! Mensen kijken me raar aan omdat het soms [dwaas] klinkt. Fibro-mist is het ergste! Ik bleef maar aardappels zeggen in plaats van donuts. Zo genant. “- Eloise T.

”  Hersenmist … als ik me de woorden niet kan herinneren. Ik zou ergens naar kunnen kijken en niet kunnen onthouden hoe het heet. Het staat precies op het puntje van mijn tong, maar de woorden komen niet. “- Paula D.

18. Incontinentie

”  Incontinentie! Het is heel gęnant, ik moet altijd inlegkruisjes dragen. En net als dat is niet erg genoeg, ik heb willekeurige blaaskrampen. Zoals plotseling en uit het niets, mijn krampen in de blaas en ik moet onmiddellijk gaan. Het heeft ongelukken veroorzaakt. “Morgan V.

”  In feite kan ik elke 15 minuten plassen. Ik dacht dat ik het was, ik had geen idee dat het kwam door fibro! Roadtrips zijn ab ****! “- Shelby LS

19. Intense emoties

”  Met pijn, wanneer het echt erg is, word ik boos, voor pijn, mezelf en anderen. Ik probeer de mensen waar ik mee werk te waarschuwen voor een slechte dag pijn, dat als ik huil of irriteer, zij het niet zijn, het is de pijn. “- Trish G.

20. Gas

”  Gas …” dijo nuff. “- Cindy J.

21. Reageren op plotselinge pijn

”  Het meest beschamende symptoom is de plotselinge kloppende pijn waardoor ik automatisch mijn gezichtsuitdrukking verander en stop met doen wat ik doe, of ik nu op mijn werk ben of met mijn gezin. Wanneer dat gebeurt, merkt iedereen de plotselinge verandering op en vraagt ​​vervolgens wat er gebeurt omdat ik er nog steeds “fit” of “gezond” uitzie. – Katherine L.

“Pijn van spontane shots die soms slopend is”. Ik kan een perfect goede dag hebben en een scherpe pijn komt uit het niets, waardoor ik huiver of zelfs roep van de pijn. “- DeAnna AC

”  Wanneer mijn lichaam plotseling dichtgaat, of wanneer ik niet van de bank kan komen zonder een gênant gegrom te maken. Ik vraag me vaak af of mensen zich realiseren hoeveel moeite het kost om deze dingen te doen. “Terri SA

22. Uitputting

”  Uitputting. Ik kan niets te lang doen of ik word zo moe dat het pijnlijk voor me is om mijn ogen open te houden. Ik moest mijn uren terugbrengen naar mijn werk en ik heb het nauwelijks gehaald. Ik moet een dutje doen om de dag door te brengen. “- Kirsten MR

”  Uitputting en isolatie. Fibromyalgie veroorzaakt me grote vermoeidheid en op mijn beurt ben ik beperkt omdat ik me schaam om niet in staat te zijn dingen te doen zoals vrienden en familie ontmoeten na de hele dag werken “

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