If you live with a chronic condition like fibromyalgia, you may be all-too-familiar with the frustrating and undesirable symptoms it can cause. Although there’s no reason to feel ashamed of any symptoms or side effects you experience, it can still be embarrassing when brain fog causes you to forget what you were saying in the middle of an important work meeting, or a sudden burst of pain makes you drop the dishes you were putting away in the kitchen.
While it may be difficult to talk about the less-than-glamorous symptoms fibro can produce, being honest and open about the many ways it can affect someone 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 may not talk about often, but ones that deserve recognition and understanding nonetheless.
Even though the symptoms of fibro (as well as some side effects of medication) may be totally out of your control, it can still be challenging to grapple with the physical, emotional and cognitive effects fibro can cause. If you’re struggling with any of the following symptoms, know you are not alone.
Here’s what our community told us:
1. Brain Fog
“Fibro fog takes the cake for me. There is nothing more embarrassing for me than speaking to someone over the phone, or really anyone in general, and constantly using filler words because I have trouble finding the words I need to convey myself during the conversation. I use a lot of Post-it notes and set reminders for just about everything.” – Bee E.
“Not being able to process what someone is saying to you and then looking rude for asking what they said more than once because to your brain they may as well be speaking gibberish.” – Dani S.
“Definitely the brain fog. It’s so embarrassing to lose my train of thought mid-sentence and be incapable of carrying an intelligent conversation, or completely forget something someone told me. It’s awful.” – Molly S.
2. Excessive Sweating
“For me, I think it’s the excessive sweating for no apparent reason. The inability to regulate your own body temperature is frustrating.” – Rachel P.
“Sweating! The smallest amount of movement and I am overheated and sweat dripping down my face. I’m all over the place at work and always burning up. It’s freezing outside and the other girls have an extra heater next to them and here I am dying with a fan on me!” – Christina K.
“As a 27-year-old woman [with] both fibromyalgia and endometriosis I often suffer from really bad hot flashes. It’s embarrassing to suddenly start fanning myself or taking off certain items of clothing in an attempt to alleviate the discomfort.” – Emily G.
3. Needing to Cancel Plans
“The most embarrassing part is having to cancel plans because I don’t feel well enough to go out. Eventually you get labeled as ‘that person.’” – Lauren H.
“It’s embarrassing to me to have to cancel plans with not a lot of notice. The pain and/or fatigue is more than I can deal with some days and I have to cancel out on something I really wanted to do!” – Jan S. P.
4. Sensory Overdrive
“When there [are] too many people talking at once or too much noise my head goes into overdrive and I become so stressed like I could explode. It’s so hard to hide how it affects me.” – Annie T.
“One thing I can’t do much anymore is watch ‘Price Is Right.’ There’s too much noise and screaming. And I’m getting where I just can’t watch it like I used to.” – Terri S.
5. Low Energy
“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.
“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.
“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.
“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.
“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.