If you live with a chronic condition like fibromyalgia, you may be all too familiar with the frustrating and unwanted symptoms it can cause. While there’s no reason to be ashamed of the symptoms or side effects you experience, it can still be embarrassing when brain fog makes you forget what you were saying in the middle of an important work meeting, or a sudden burst of pain makes you forget what you were saying in the middle of an important work meeting. Your jaw drops, and the dishes you were putting away in the kitchen.
While it can be difficult to talk about the less glamorous symptoms fibromyalgia can produce, being honest and open about the many ways it can affect a person is an important step toward raising awareness of this complex and often misunderstood condition. That’s why we asked our Mighty community to share some of the “embarrassing” fibromyalgia symptoms they’ve experienced—symptoms we don’t often get to talk about, but which nonetheless deserve to be acknowledged and understood.
Although the symptoms of fibromyalgia (as well as some medication side effects) may be completely out of your control, it can be difficult to manage the physical, emotional, and cognitive effects that fibromyalgia can cause. If you experience any of the following symptoms, know that you are not alone.
Here’s what our community told us:
1. Brain Fog
“Fibro fog takes the cake.” There’s nothing more embarrassing for me than talking to someone on the phone, or anyone in general, and constantly using filler words because I struggle to find the words I need to express during the conversation. I use a lot of Post-it notes and set reminders for almost everything. -Bee E.
“Not being able to understand what someone is saying to you and appearing rude by asking them what they said more than once, because they may be talking gibberish to your brain.” -Dani S.
“Definitely brain fog. It’s so embarrassing to lose my train of thought mid-sentence and be unable to carry on an intelligent conversation, or to completely forget something someone said to me. It’s horrible.” -Molly S.
2. Excessive Sweating
“For me, I think it’s excessive sweating for no apparent reason. The inability to regulate your own body temperature is frustrating.” -Rachel P.
“Sweating! The slightest movement and I overheat and sweat runs down my face. I’m everywhere at work and always on fire. It’s so cold outside and the other girls have a space heater next to them and here I am dying with a fan!” -Christina K.
“As a 27-year-old woman with fibromyalgia and endometriosis, I often experience very severe hot flashes. It’s embarrassing to suddenly start fanning myself or removing certain items of clothing to try to relieve the discomfort.” – Émilie G.
3. Need to Cancel Plans
“The most embarrassing thing is having to cancel plans because I don’t feel well enough to go out. Eventually, you’re labeled as ‘that person.’” – Lauren H.
“It’s embarrassing for me to have to cancel plans without notice. The pain and/or fatigue is more than I can bear some days and I have to cancel something I really wanted to do!” – Jan SP
4. Sensory Overdrive
“When there are too many people talking at once or too much noise, my head goes into overdrive and I get so tired I risk exploding. It’s very hard to hide how much it affects me.” –Annie T.
“One thing I can’t do anymore is watch ‘The Price Is Right.’ There’s too much noise and yelling. And it’s gotten to the point where I just can’t watch it the way I used to.” – Terri S.
5. Lack of Energy
“Sometimes I don’t have enough energy to do simple things like take a shower or make dinner for my kids or even some days. “I can’t get out of bed to do things with my kids.” -Skye L.
“The complete lack of energy. I understand it’s my fibro. Others just see it as laziness. Michelle P.
“Fatigue. When it happens, I have to sit down immediately, no matter where I am.” – Lisa T.
6. Weight Fluctuations
“I’m fed up with my weight gain. I can’t seem to get rid of it, and I feel embarrassed when I see people who used to know me.” Léa M.
7. Gastrointestinal Symptoms
“Gastrointestinal issues. I always feel uncomfortable talking to my doctor about my gastrointestinal symptoms, whether it’s nausea, constipation, or diarrhea.” – Mattie M.
“I have diarrhea. My stomach problems constantly interfere with my life. Last Thanksgiving, I was able to sit and watch everyone eat. I was too terrified to eat myself because of the diarrhea. It never ends. Sometimes I go days without eating because of it.” – Melissa G.
“IBS [irritable bowel syndrome] and all the beauty that comes with it. I have to avoid certain foods simply because I’ve become very sensitive to them. Not only because of the embarrassing symptoms that come with it, but also because of the cramps, headaches, and rashes that come with eating the ‘bad food.’” Ashley A.
8. Musculoskeletal Pain
“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 have to bend over something. People think you’re lazy, but my legs literally want to give up! -Meena N.
“I enjoy being active and visiting places like the zoo or amusement parks with friends. But when I’m in an environment where I’m walking a lot, it’s awkward to have to take breaks because of my knees and hips. At 23, people my age can get annoyed by my need to stop, sometimes getting questioning looks from older people or comments like, ‘You’re too young to be in this pain.’ I usually try to push myself as much as possible, but it only makes the pain worse when I finally give in and take a break.” -Shelby C.
9. Rashes/Hives
“The red rash I get on my neck from the air. Sometimes it’s just in one spot, sometimes it’s gone. When I’m out and about, people sometimes think I have a hickey. It’s pretty embarrassing.” – Krystina KF
10. Balance Problems
“My balance. It got worse and I fell when I should have been able to save myself – the one in front of a friend’s house in their flowerbed was the worst as I was in shock (I don’t really know what I have). “ – Lisa SECOND.
11. Sensitivity to Odors
“My mild intolerance to heat, odors, and smoke. Since I am dressed appropriately and looking forward to a social gathering, the discomfort begins with profuse sweating and lightheadedness due to the “heat” my body feels. Add the smell or smoke of cooking, whether at home or in a restaurant; barbecue is my enemy. I want to indulge, but my body refuses, and others see me as a spoilsport or just too demanding.” – Vee Vee Y.
12. Being Cold
“Being so cold. All the time. I live in Texas. During the summer, I wear sweaters and always have to take a jacket everywhere I go. It’s over 100 degrees, so everywhere I go the air conditioning is on and I try to get my hands warm enough to feel them.” – Kristi R.
13. Muscle Contractions and Spasms
“Spasms. Almost constant contractions, some of which are huge and people look at you graciously, because you can’t control your own body.” – Rhian S.
“My feet and legs will shake or twitch. I often scream or yell when this happens because it hurts. People stare at me, and it makes me incredibly self-conscious. I can’t control it.” – Élyse B.
“Random back spasms that make it hard to walk when I’m in the middle of a store. I don’t like being the center of attention, and nothing screams ‘look at me’ like you can’t move.” Megan M.
“I get random muscle spasms. It makes me lose control a lot.” –Danika S.
14. Having the “sniffles”
“The constant sniffling/coughing/dry mouth caused by my medication. Really uncomfortable in some areas and coughing and sniffling. When my sister gave birth, I was holding her and sniffling, and some people thought I was sick and holding a newborn! Nope! Sorry, it’s just my medication making me sound like that!” – Grenat D.
15. Sensitivity to touch
“When someone is going to touch me, I always back away because I know it’s going to hurt.” -Amanda P.
“When I have to tell people, please don’t hug me or say goodbye because it hurts too much.” – Audrey M.
16. Muscle Weakness
“Loss of grip and movement in my hand, resulting in many falls from shock. While grocery shopping, I stand in the middle, crying in frustration, not caring that I can’t open a can or bottle of drink.” –Anne W.
“When I get a rash, my muscles become stiff and weak. I start walking 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 an hour ago. It’s shocking to them and almost impossible to explain. Then boom, a day, a week. Anyway later, I seem fine.” -Katrina R.
17. Difficulty speaking
“Not being able to speak. I forgot words, I stumbled over them, I said words that didn’t make sense. What’s worse is that I work with children and parents sometimes look at me and I feel so [stupid] for not being able to express my thoughts smoothly. Just writing this took me 15 minutes because I had to go back and rewrite misspelled words or words that didn’t make sense.” – Marissa E.
“I mix up words and it comes out really weird! People look at me weird because I look so silly sometimes. The 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. You could look at something and not be able to remember its name. It’s right there on the tip of my tongue, but the words won’t come.” -Paula D.
18. Incontinence
“Incontinence! It’s super embarrassing, I have to wear panty liners all the time. And as if that’s not bad enough, I get random bladder cramps. Like out of nowhere, my bladder cramps and I have to leave right away. It’s caused me to have accidents.” Morgane V.
“I can actually pee every 15 minutes. I thought it was just me, I didn’t know it was because of fibro! Road trips are a pain!” -Shelby LS
19. Heightened Emotions
“With pain, when it’s really bad, I get angry, because of the pain, at myself and at others. I try to warn the people I work with on a day when the pain is intense, that if I cry or get angry, it’s not them, it’s the pain.” – Trish G.
20. Gas
“Gas…” says nuff. “-Cindy J.
21. Reacting to Sudden Pain
“The most embarrassing symptom is the sudden, stabbing pain that automatically makes me change my expression and stop what I’m doing, whether I’m at work or with my family. When this happens, everyone notices the sudden change and then wonders what’s wrong because I always look “fit” or “healthy.” –Katherine L.
“Spontaneous, sometimes disabling, shooting pains.” I can be having a great day and a sharp pain comes out of nowhere, making me wince or even cry out in pain. –DeAnna AC
“When my body suddenly shuts down, or when I can’t get up off the couch without making an embarrassing grunt. I often wonder if people realize how much effort it takes for me to do these things.” Terri SA
22. Exhaustion
“Exhaustion. I can’t do anything for too long or I’m so tired it hurts to keep my eyes open. I’ve had to cut back on my work hours and I can barely manage. I need to nap to get through the day.” – Kirsten MR
“Exhaustion and isolation. Fibromyalgia makes me very tired, and I, in turn, withdraw because I feel embarrassed that I can’t do things like meet up with friends and family after working all day.” – Koroleva V.
