‘Embarrassing’ Symptomer på fibromyalgi vi ikke snakker om

Av  Paige Wyant

Hvis du lever med en kronisk tilstand som fibromyalgi, kan du være altfor kjent med de frustrerende og uønskede symptomene det kan forårsake. Selv om det ikke er noen grunn til å skamme seg over symptomer eller bivirkninger du opplever, kan det fremdeles være pinlig når tåke i hjernen får deg til å glemme det du sa midt i et viktig arbeidsmøte, eller et plutselig smerteutt får deg til å slippe oppvasken du la bort på kjøkkenet.

Selv om det kan være vanskelig å snakke om de mindre glamorøse symptomene som fibro kan gi, er det å være ærlig og åpen om de mange måtene det kan påvirke noen et viktig skritt mot å bevisstgjøre denne komplekse og ofte misforståtte tilstanden. Derfor ba vi vårt Mighty community om å dele noen av de “pinlige” fibromyalgi-symptomene de har opplevd – symptomer vi kanskje ikke snakker om ofte, men de som likevel fortjener anerkjennelse og forståelse.

Selv om symptomene på fibro (så vel som noen bivirkninger av medisiner) kan være helt utenfor kontrollen, kan det fortsatt være utfordrende å takle de fysiske, emosjonelle og kognitive effektene fibro kan forårsake. Hvis du sliter med noen av følgende symptomer, vet du at du ikke er alene.

Dette er hva samfunnet vårt fortalte oss:

1. Hjernetåke

“ Fibro-tåke tar kaken for meg. Det er ikke noe mer flaut for meg enn å snakke med noen over telefon, eller egentlig noen generelt, og stadig bruke fillerord fordi jeg har problemer med å finne ordene jeg trenger å formidle selv under samtalen. Jeg bruker mange Post-it-lapper og stiller påminnelser om omtrent alt. ” – Bee E.

“Å ikke kunne behandle det noen sier til deg og så uhøflig etter å spørre hva de sa mer enn en gang, fordi de til hjernen din også kan snakke.” – Dani S.

“ Definitivt hjernetåken. Det er så flaut å miste tankegangen midt i setningen og være ute av stand til å føre en intelligent samtale, eller helt glemme noe noen sa til meg. Det er forferdelig.” – Molly S.

2. Overdreven svette

“ For meg tror jeg det er overdreven svette uten åpenbar grunn. Manglende evne til å regulere din egen kroppstemperatur er frustrerende. ” – Rachel P.

“ Svette!  Den minste bevegelsen og jeg er overopphetet og svette drypper nedover ansiktet. Jeg er over alt på jobb og brenner alltid opp. Det er iskaldt ute og de andre jentene har en ekstra varmeovn ved siden av seg og her dør jeg med en vifte på meg! ” – Christina K.

“Som 27 år gammel kvinne [med] både fibromyalgi og endometriose lider jeg ofte av virkelig dårlige hetetokter. Det er flaut å plutselig begynne å fanne meg eller ta av visse klær for å lindre ubehaget. ” – Emily G.

3. Behov for å avbryte planer

“ Den mest pinlige delen er å måtte avlyse planer fordi jeg ikke føler meg bra nok til å gå ut. Etter hvert blir du stemplet som ‘den personen.’ ”- Lauren H.

“ Det er flaut for meg å måtte avbryte planer uten mye varsel. Smerte og / eller tretthet er mer enn jeg kan takle noen dager, og jeg må avlyse noe jeg virkelig ønsket å gjøre! ” – Jan SP

4. Sensory Overdrive

“ Når det [er] for mange mennesker som snakker på en gang eller for mye støy, går hodet over i overdrive, og jeg blir så stresset at jeg kan eksplodere. Det er så vanskelig å skjule hvordan det påvirker meg. ” – Annie T.

” En ting jeg ikke kan gjøre mye lenger er å se ‘Price Is Right.’ Det er for mye støy og skrik. Og jeg kommer dit jeg bare ikke kan se på det som jeg pleide å gjøre. ” – Terri S.

5. Lav energi

“Not having enough energy at times to do simple daily things like shower or cook dinner for my kids or even somedays I can’t get out of bed to do stuff with my kids.” – Skye L.

“The complete lack of energy. I understand that it’s my fibro. Others just see lazy.” – Michelle P.

“The fatigue. When it strikes, I have to sit down immediately, regardless of where I am.” – Lisa T.

6. Weight Fluctuations

“I am tired of my weight gain. I can’t shake it and I am embarrassed when I see people who knew me before.” – Leah M.

7. Gastrointestinal Symptoms

“Gastrointestinal issues. I always feel awkward telling my doctors about my GI-related symptoms, whether it be nausea, constipation or diarrhea.” – Mattie M.

“I have diarrhea. My stomach problems interfere with my life constantly. This past Thanksgiving I had to sit and watch everyone eat. I was too terrified to eat myself because of diarrhea. It never ends. I sometimes go days without eating because of it.” – Melissa G.

“IBS [irritable bowel syndrome] and all the loveliness that entails. I have to avoid certain foods just because I’ve become so sensitive to them. Not only because of the embarrassing symptoms it brings, but cramps, headaches and flare-ups that come with eating a ‘bad food.’” – Ashley A.

8. Musculoskeletal Pain

“The back and leg pain. I can’t sit, stand or walk for more than 30 minutes at a time. I’m constantly moving if I’m standing or I have to lean over on something. People think you’re lazy, but my legs literally want to give out!” – Meena N.

“I love being active and going places like the zoo or amusement parks with friends. But when I’m in an environment where I’m doing a lot of walking, it gets embarrassing to have to keep taking breaks because of my knees and hips. As a 23-year-old, people my own age can get annoyed by my needing to stop, and I will sometimes get questioning stares from older people or comments like ‘you’re too young to have those pains.’ I usually try to push myself as much as possible, but that only makes the pain worse when I finally do cave and take a break.” – Shelby C.

9. Rashes/Hives

“The red rash I get on my neck from thin air. Sometime it’s just in one spot, sometimes it’s all over. When it’s in one spot, people sometimes think I have a hickey. It’s kind of embarrassing.” – Krystina K. F.

10. Balance Issues

“My balance. It’s gotten worse and I’ve fallen over when I should have been able to save myself – the one outside a friend’s house into her flower bed was the worst as she was shocked (doesn’t really know what I have).” – Lisa B.

11. Sensitivity to Smells

“My poor intolerance to heat, odors and smoke. Like I’m appropriately all dressed up and eager for a social gathering, then the feeling of discomfort kicks in with heavy sweating and light headedness due to the ‘heat’ my body is perceiving. Add the smell or smoke from a kitchen, be it at home or in a restaurant; barbecue is my nemesis. I want to enjoy yet my body refuses and others see me as a killjoy or just too fussy.” – Vee Vee Y.

12. Feeling Cold

“Being so cold. All the time. I live in Texas. During the summer I wear sweaters and always have to have a jacket wherever I go. It’s over 100 degrees out so every place has the AC cranked up and I’m trying to warm my hands enough to have feeling in them.” – Kristi R.

13. Muscle Twitches and Spasms

“Spasms. Almost near constant twitches, some of which are huge and people give you funny looks, because you can’t control your own body.” – Rhian S.

“My feet and legs will jerk or twitch. I’ll often squeak or yelp when it happens because it hurts. People stare and it makes me incredibly self-conscious. I can’t control it.” – Elyse B.

“The random back spasms that leave me unable to walk while in the middle of a store. I don’t like being the center of attention and nothing screams ‘look at me’ like not being able to move.” – Megan M.

“I get random muscle spasms. It causes me to drop things a lot.” – Danika S.

14. Having the “Sniffles”

“The constant sniffles/cough/dry mouth my meds cause. Really awkward to be certain places and be coughing and sniffling. When my sister had her baby I was holding her and sniffling and some thought I was sick and holding a newborn! No! Sorry, just my meds making me sound like it!” – Garnet D.

15. Sensitivity to Touch

“When someone goes to touch me, I always flinch because I know it’s going to hurt.” – Amanda P.

“When I have to tell people please don’t hug me goodbye or hello because it hurts too much.” – Audrey M.

16. Muscle Weakness

“Loss of grip and movement in my hand resulting in numerous dropped jars. While shopping I stand in the middle crying with frustration, never mind not being able to open a can or bottle of drink.” – Ann W.

“When I am in a flare my muscles become stiff and weak. I start to walk funny and it becomes very difficult to open doors, bend over etc. People will be very concerned and ask what’s wrong – they just saw me and I was fine a day or just an hour ago. It’s shocking to them and almost impossible to explain. Then boom, a day, week. whatever later I appear to be fine.” – Katrina R.

17. Difficulty Speaking

“Not being able to talk. I forget words, stumble over them, say words that make no sense. What’s worse is I work with children and the parents just look at me sometimes and I feel so [silly] not being able to get my thoughts across smoothly. Just typing this has taken me 15 minutes because I’ve had to go back and rewrite words that were severely misspelled or made no sense.” – Marissa E.

“I mix up words and it comes out so weird! People look at me funny because it sounds so [silly] sometimes. Fibro fog is the worst! One time I kept saying potatoes instead of donuts. So embarrassing.” – Eloise T.

“Brain fog… When I can’t remember the words. Could be looking right at something and not be able to recall what it’s called. It’s right there on the tip of my tongue but the words don’t come.” – Paula D.

18. Incontinence

“Incontinence! It is super embarrassing, I have to wear pantyliners all the time. And like that’s not bad enough, I have random bladder cramps. Like just suddenly and out of nowhere, my bladder cramps and I have to go immediately. It’s caused me to have accidents.” – Morgan V.

“I can actually pee every 15 minutes. I thought it was just me, had no idea it was because of the fibro! Road trips are a b****!” – Shelby L. S.

19. Heightened Emotions

“With pain, when it’s really bad I get angry – at the pain, myself and others. I try to warn the people I work with on a bad pain day, that if I burst out crying or seem irritated it’s not them, it’s the pain.” – Trish G.

20. Gas

“Gas… ’nuff said.” – Cindy J.

21. Reacting to Sudden Pain

“The most embarrassing symptom of mine is the sudden shooting pains causing me to automatically change expressions and stop whatever I’m doing, whether I’m at work or with family. When that happens everyone notices the sudden change and then asks what’s wrong because I still look ‘in shape’ or ‘healthy.’” – Katherine L.

“Spontaneous shooting pain that is sometimes debilitating. I can have a perfectly good day and sharp pain comes from nowhere, causing me to wince or even cry out in pain.” – DeAnna A. C.

“When my body locks up suddenly, or when I can’t get up off the sofa without making some embarrassing grunting noise. I often wonder if people notice just how much effort it takes me to do these things.” – Terri S. A.

22. Exhaustion

“The exhaustion. I can’t do anything too long or I get so tired it becomes painful to keep my eyes open. I have had to cut my hours back at work and I’m barely making it by. I need to nap to get through the day.” – Kirsten M. R.

“Exhaustion and seclusion. Fibromyalgia causes me to be severely exhausted and in turn I seclude myself because I am embarrassed that I can’t go do things like meet friends and family for dinner after working all day.” – Koroleva V.

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