BY JULIA NELSON
If you’re suffering from an everlasting ailment like fibromyalgia, you’re already well aware of the annoying and adverse symptoms comes through it. You should not feel ashamed and miserable because of the symptoms and side effects you’re experiencing, but it will cause embarrassment when you forget about what you were saying in the middle of an important work meeting because of brain fog, or you fall off drop all the dishes in the kitchen due to a sudden burst of pain you felt.
Every fibromyalgia patient suffers from different symptoms, so it’s necessary to talk about its less-than-glamorous symptoms, for the reason to raise awareness among people to solve the complexity of this condition. That’s why Mighty community in order to solve the problem, share some of the “embarrassing” fibromyalgia symptoms they’ve gone through – those symptoms that are most of the time remain hidden, but ones that surely deserve recognition and consideration nonetheless.
Symptoms of fibromyalgia including fibro fog and negative effects of medication can cause physical, emotional and cognitive problems. If you’re undergoing through any of the following symptoms, know you are not alone.
Here’s what mighty community told:
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. Too much 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. Always 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 as I could explode. It’s so hard to hide how it affects me.” – Annie T.
“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. Changing in Weight
“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 Problems
“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. Lower back and Leg 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. Dizziness and Balance Problems
“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. Hypersensitivity to Sensory Stimuli
“My poor intolerance to heat, odours 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. Temperature Sensitivity
“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. Widespread Muscle Twitches and Pain
“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. Skin 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. Problems with Speech
“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.
17. Urinary Incontinence
“Incontinence! It is super embarrassing, I have to wear panty liners 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.
18. Emotional Sensitivity
“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.
19. 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.