Om du lever med ett kroniskt tillstånd som fibromyalgi, kanske du är väl medveten om de frustrerande och oönskade symtomen det kan orsaka. Även om det inte finns någon anledning att skämmas över de symtom eller biverkningar du känner, kan det vara pinsamt när hjärndimma får dig att glömma vad du sa mitt i ett viktigt arbetsmöte, eller plötslig smärtlindring får dig att falla. . Rätter du höll i köket.
Det kan vara svårt att prata om de mindre prestigefyllda symtomen som fibro kan orsaka, men att vara ärlig och öppen om de många sätten det kan påverka en person är ett viktigt steg för att bli medveten om denna komplexa och ofta sjuk sjukdom. förstått. . Det är därför vi bad vår mäktiga gemenskap att dela några av de “pinsamma” symtomen på fibromyalgi som de har stött på, symtom som vi kanske inte pratar om ofta, men som ändå förtjänar att bli erkända och förståda.
Även om fibrosymtom (såväl som några av biverkningarna av läkemedel) kan vara helt utan kontroll kan det vara svårt att hantera de fysiska, emotionella och kognitiva effekterna som fibro kan orsaka. Om du har problem med något av följande symtom, var medveten om att du inte är ensam.
Det här är vad vår gemenskap sa till oss:
1. Hjärndimma
“Fibro dimma tar handflatan bort.” Det finns inget mer pinsamt för mig än att prata med någon i telefon, eller verkligen någon i allmänhet, och ständigt använda fillerord eftersom jag inte kan hitta orden. som jag måste uttrycka under samtalet. Jag använder många post-it-anteckningar och ställer påminnelser för nästan allt. – Abeille E.
“Att inte kunna hantera vad någon säger till dig och då verkar det oförskämt att fråga dem vad de har sagt mer än en gång eftersom din hjärna kanske talar illa om alla.” – Dani S.
”Visst en hjärnmåga. Det är så pinsamt att tappa tråden i mina tankar mitt i meningen och att inte kunna ha en intelligent konversation eller helt glömma något som någon sa till mig. Det är hemskt. “- Molly S.
2. Överdriven svett.
”För mig tror jag att det är överdriven svettning utan någon uppenbar anledning. Oförmågan att reglera din kroppstemperatur är frustrerande. – Rachel P.
Svettas! Minsta rörelse möjligt och jag är överhettad och svett droppar i ansiktet. Jag är överallt på jobbet och alltid i brand. Det är väldigt kallt ute och de andra flickorna har en extra värmare bredvid dem, och här dör jag med en fläkt! “- Christina K.
”Som 27-årig kvinna med fibromyalgi och endometrios lider jag ofta av mycket värmevallningar. Det är pinsamt att plötsligt fläta eller ta bort dina kläder för att försöka lindra obehaget. – Emily G.
3. Behöver avbryta planer
“Det mest pinsamma är att avbryta planerna eftersom jag inte känner mig tillräckligt bra för att lämna.” Slutligen kallar de dig “den här personen” “- Lauren H.
”Det är pinsamt för mig att avbryta projekt utan föregående meddelande. Smärta och / eller trötthet är viktigare än jag kan hantera vissa dagar och jag måste avbryta något jag verkligen ville göra. – Jan SP
4. Overdrive sensorial
”När det är för många som pratar samtidigt eller för mycket ljud, är mitt huvud överbelastat och jag är så upprörd att det kan explodera. Det är väldigt svårt att dölja vad som oroar mig. – Annie T.
”En sak jag inte kan göra är att titta på” Priset är rätt. ” Det är för mycket ljud och skrik. Och jag kommer till en plats där jag inte kan se det som tidigare. “- Terri S.
5. Låg energi
“Ibland har jag inte tillräckligt med energi för att göra enkla saker, som att duscha eller förbereda middag för mina barn eller till och med några dagar.” Jag kan inte gå ur sängen för att göra saker med mina barn. – Skye L.
”Den totala bristen på energi. Jag förstår att det är min fibro. Andra ser bara lata människor. Michelle P.
“Trötthet. När det slår, måste jag sätta mig omedelbart, oavsett var jag är. “- Lisa T.
6. Fluktuationer i vikt.
”Jag är trött på min viktökning. Jag kan inte skaka av det och jag är generad över att se människor som kände mig tidigare. Leah M.
7. gastrointestinala symtom
” Gastrointestinala störningar. Jag känner mig fortfarande obekväm att prata med mina läkare om min gastrointestinala symtom, vare sig det är illamående, förstoppning eller diarré. “- Mattie M.
” Jag har diarré. Mina problem med magen stör ständigt mitt liv. För sista Thanksgiving, var jag tvungen att sitta ner och se alla äta. Jag var för livrädd att äta själv på grund av diarré. Det slutar aldrig. Ibland går jag dagar utan att äta på grund av det. “- Melissa G.
”IBS [irritabelt tarmsyndrom] och all skönhet som följer med det . Jag måste undvika vissa livsmedel bara för att jag har blivit mycket känslig för dessa livsmedel. Inte bara på grund av de pinsamma symtomen som det ger, utan också på grund av kramper, huvudvärk och epidemier som följer konsumtionen av “dålig mat” “- Ashley A.
8. Muskuloskeletalsmärta
”Smärta i rygg och ben”. Jag kan inte sitta, stå eller gå mer än 30 minuter åt gången. Jag rör mig ständigt om jag står eller om jag måste titta på något. Folk tror att du är lat, men mina ben är bokstavligen övergivna! “- Meena N.
”Jag gillar att vara aktiv och besöka platser som djurparken eller nöjesparker med vänner. Men när jag går mycket är det pinsamt att behöva ta pauser på mina knän och höfter. Vid 23 års ålder kan folk i min ålder retas om mitt behov av att gå av. Ibland ber de mig om nyfikna blickar från äldre människor eller kommentarer som “du är för ung för att få dessa smärta.” Vanligtvis försöker jag arbeta så hårt jag kan, men smärtan blir bara värre när jag äntligen gör en grotta och tar en paus. Shelby C.
9. Utslag / rynkor
”Det röda utslaget på min hals sett från himlen. Vid ett tillfälle är han bara på ett ställe, ibland är det över. När du är på en plats tror folk ibland att jag har en hickkey. Det är lite pinsamt. “- Krystina KF
10. Balansproblem.
”Min balans. Det blev värre och jag föll medan jag kunde rädda mig; Den framför en väns hus i hans blomsterrabatt var det värsta sedan hans förvåning (jag vet verkligen inte vad jag har). “- Lisa SECOND.
11. Känslighet för lukt.
”Min svaga intolerans mot värme, lukt och rök. Genom att klä sig på lämpligt sätt och vilja delta på ett socialt möte börjar känslan av rastlöshet med intensiv svettning och yrsel på grund av ”värmen” som min kropp upplever. Tillsätt lukten eller rök från ett kök, hemma eller i restaurangen; Grillen är min svurna fiende. Jag vill njuta av det, men min kropp vägrar och andra ser mig som en fest eller bara för krävande. “- Vee Vee Y.
12. att vara kallt
”Att vara så kallt. Hela tiden. Jag bor i texas. Under sommaren bär jag tröjor och bär alltid en jacka vart jag än går. Det är över 100 grader, så luftkonditionering är installerad överallt och jag försöker värma upp nog för att må bra. “- Kristi R.
13. Muskelsammandragningar och spasmer.
Spasmer. Nästan ständiga rörelser, av vilka några är enorma och människor tittar på dig graciöst, eftersom du inte kan kontrollera din egen kropp. – Rhian S.
Mina fötter och ben kommer att skaka eller sammandras. Jag skriker eller skriker ofta när det händer eftersom det gör ont. Folk tittar på mig och gör mig otroligt självmedveten. Jag kan inte kontrollera det ”- Elyse B.
”Slumpmässiga spasmer i ryggen som hindrar mig att gå medan jag är mitt i en butik. Jag gillar inte att vara uppmärksamhetens centrum och ingenting skriker “titta på mig” som om du inte kan röra dig. Megan m.
”Jag har slumpmässiga muskelspasmer. Det får mig att förlora många saker. “- Danika S.
14. har “sniffles”
Konstant inandning / hosta / torr mun orsakad av min medicinering. Verkligen obekvämt för vissa ställen och hosta och läppar. När min syster fick sitt barn höll jag henne i mina armar och drack. Vissa trodde att hon var sjuk och kramade ett nyfött barn! Låt bli! Tyvärr, bara mina mediciner får mig att låta så här! “- Garnet D.
15. känslighet för beröring
“När någon kommer att röra mig kommer jag alltid tillbaka eftersom jag vet att det kommer att göra ont.” – Amanda P.
“När jag måste berätta för folk, snälla ta mig inte i dina armar och inte säga adjö för det gör ont för mycket.” – Audrey M.
16. muskelsvaghet
”Förlust av grepp och rörelse i handen, vilket får många kolvar att tappa. När jag shoppar gråter jag halvt av frustration, oroar mig inte för att jag inte kan öppna en burk eller en flaska drink. “- Ann W.
”När jag har utslag blir mina muskler styva och svaga. Jag börjar gå konstigt och det blir väldigt svårt att öppna dörrarna, böja sig ned, etc. Folk kommer att oroa sig mycket och fråga vad som händer, de såg mig bara och jag hade det bra för en dag eller en timme sedan. Det är chockerande för dem och nästan omöjligt att förklara. Sedan boom, en dag, en vecka. Inget senare tycks det vara bra. – Katrina R.
17. Svårigheter att tala.
” Jag kan ej tala. Jag glömde orden, snubbade över dem, sa ord som inte är vettiga. Det som är värre är att jag arbetar med barn och att mina föräldrar ibland ser på mig och känner mig så dum att jag inte kan uttrycka mina tankar utan problem. Det tog mig 15 minuter eftersom jag var tvungen att skriva om felstavade eller nonsensord. “- Marissa E.
”Jag blandar orden och det kommer verkligen konstigt ut! Folk tittar på mig konstigt eftersom det ibland verkar [dumt] för mig. Fibro dimman är värst! Jag upprepade en gång potatisarna istället för munkar. Så pinsamt. – Eloise T.
”Hjärndimma … när jag inte kommer ihåg orden. Du kan titta på något utan att kunna komma ihåg vad det heter. Det är precis där på tungans spets, men orden kommer inte. – Paula D.
18. inkontinens
Inkontinens! Det är super irriterande, jag måste ha trosor hela tiden. Och eftersom det inte räcker har jag slumpmässiga krampor i urinblåsan. Så plötsligt och ingenstans, krampar mina urinblåsan och jag måste omedelbart åka. Detta orsakade olyckor. Morgan V.
Faktum är att jag kan urinera var 15 minut. Jag trodde att det bara var jag, jag visste inte att det var på grund av fibro! Vägresor är ab ****! – Shelby LS
19. intensiva känslor
“Med smärta, när det är riktigt dåligt, blir jag arg, för smärtan, för mig själv och för andra.” Jag försöker varna de människor jag arbetar med på en dålig dag av smärta att om jag gråter eller blir arg, är det inte dem, det är smärta. – Trish G.
20. Reagerar på plötslig smärta
”Det mest pinsamma symptomet är plötslig, ihållande smärta som får mig att automatiskt ändra mitt uttryck och sluta göra vad jag gör, vare sig det är på jobbet eller med min familj. När detta händer märker alla den plötsliga förändringen och frågar sedan vad som händer eftersom jag alltid ser “fit” eller “frisk.” – Katherine L.
“Smärta från spontana slag ibland försvagande.” Jag kan ha en mycket bra dag och stor smärta kommer ingenstans, vilket gör att jag skakar eller skriker av smärta. – DeAnna AC
”När min kropp plötsligt stängs, eller när jag inte kan stiga upp från soffan utan att göra ett pinsamt skrik. Jag undrar ofta om människor inser hur mycket ansträngning som krävs för att göra dessa saker. “Terri sa
21. utmattning
Utmattning. Jag kan inte göra någonting på länge eller jag blir så trött att det gör ont att hålla ögonen öppna. Jag var tvungen att minska timmarna för att komma tillbaka till jobbet och gjorde det knappt. Jag måste ta en tupplur för att komma igenom dagen. “- Kirsten MR
Utmattning och isolering. Fibromyalgi orsakar mig stor trötthet och i sin tur är jag begränsad eftersom jag skäms över att jag inte kan göra saker som att träffa vänner och familj efter att ha jobbat hela dagen. ”- Koroleva V.
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היא קראה לו לפתוח את הסתימה במטבח ובסוף הוא פתח אותה במטבח – זיון חזק עם האינסטלטור
נערות ליווי
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