22 “embarrassing” symptoms of fibromyalgia that are not talked about
If you live with a chronic condition like fibromyalgia, you may be too familiar with the frustrating and unwanted symptoms it can cause. Although there is no reason to feel ashamed of the symptoms or side effects you experience, it can be embarrassing when brain fog makes you forget what you say in the middle of a major work meeting, or a sudden pain makes you fall off the dishes you were putting away in the kitchen.
While it can be difficult to talk about the less glamorous symptoms that 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 that we do not often talk about, but that nevertheless deserve to be recognized and understood.
Even though fibro symptoms (as well as some of the side effects of medications) may be totally out of your control, it can still be difficult to tackle the physical, emotional, and cognitive effects that fibro can cause. If you have any of the following symptoms, be aware that you are not alone.
“Fibro’s fog takes the cake for me. There is nothing more embarrassing for me than talking to someone on the phone, or someone in general, and constantly using fill words because I can not find the words that I need to talk to me during the conversation. I use a lot of post-it and I put reminders for just about everything. – Bee E.
“Not being able to handle what someone tells you and then seem rude to ask what they have said more than once because for your brain they can talk as well about gibberish.” – Dani S.
“Definitely brain fog. It’s so embarrassing to lose my train of thought mid-sentence and be unable to conduct an intelligent conversation, or completely forget something someone told me. It’s horrible. “- Molly S.
- Excessive perspiration
“For me, I think it’s excessive sweating for no apparent reason. The inability to regulate the temperature of one’s own body is frustrating. “- Rachel P.
“Sweat! The smallest amount of movement and I am overheated and sweat dripping on my face. I am everywhere at work and I am still burning. It’s freezing outside and the other girls have extra heating next to them and here I’m dying with a fan on me! “- Christina K.
“As a 27 year old woman [with] both fibromyalgia and endometriosis, I often suffer from very bad hot flashes. It’s embarrassing to suddenly start to fan or take off some clothes to try to relieve the discomfort. – Emily G.
Related: How Michael J. Fox Helped Me Accept My Diagnosis Fibromyalgia
- Need to cancel plans
“The most embarrassing part is having to cancel plans because I do not feel good enough to go out. Eventually, you get labeled as “that person.” – Lauren H.
“It’s embarrassing for me to have to cancel plans with little notice. The pain and / or fatigue are more than I can bear a few days and I have to cancel something that I really wanted to do! “- Jan SP
- Sensory overdrive
“When there are too many people talking at once or too much noise, my head gets overdriven and I get so stressed that I can explode. It’s so hard to hide how it affects me. “- Annie T.
“One thing I can not do is look at” Price Is Right “. There is too much noise and shouting. And I’m coming where I can not look like before. “- Terri S.
- Low energy
“I do not have enough energy to do simple everyday things like taking a shower or cooking a dinner for my kids or even one day I can not get out of bed doing stuff with my kids.” – Skye L .
“The total lack of energy. I understand that it’s my fibro. Others only see lazy people. “- Michelle P.
” Tiredness. When he hits, I have to sit down immediately, no matter where I am. – Lisa T.
- Fluctuations in weight
“I’m tired of my weight gain. I can not shake him and I am embarrassed when I see people who knew me before. “- Leah M.
- Gastrointestinal symptoms
“Gastrointestinal problems. I still feel uncomfortable talking to my doctors about my digestive system symptoms, whether it’s nausea, constipation or diarrhea. – Mattie M.
” I have diarrhea. My stomach problems constantly interfere with my life. This last Thanksgiving I had to sit down and watch everyone eat. I was too terrified to eat because of the diarrhea. It never ends. I spend days without eating because of that. – Melissa G.
“IBS [Irritable Bowel Syndrome] and all the beauty that comes with it. I have to avoid certain foods just because I became so sensitive to them. Not only because of embarrassing symptoms, but also because of cramps, headaches, and relapses that are accompanied by poor nutrition. – Ashley A.
- Musculoskeletal pain
“The pain in the back and leg. I can not sit, stand or walk for more than 30 minutes at a time. I move constantly if I am standing or if I have to look at something. People think you are lazy, but my legs literally want to give! “- Meena N.
“I like being active and going to places like the zoo or amusement parks with friends. But when I am in an environment where I walk a lot, it becomes embarrassing to have to continue to take breaks because of my knees and my hips. At the age of 23, people my age may be annoyed by my need to stop, and I sometimes get questioning looks from older people or comments like “you’re too young to have these pains”. I usually try to push myself as much as I can, but it only makes the pain worse when I end up caving and taking a break. – Shelby C.
- Rashes / hives
“The red rash that I get on my neck looks thin. Sometimes it’s just the same place, sometimes it’s over. When it’s in a place, people sometimes think I have a hickey. It’s rather embarrassing. “- Krystina KF
- Balance problems
“My balance. It got worse and I fell when I could have saved myself – the one who was outside a friend’s house in his flowerbed was the worst because she was shocked (do not really know what I’m doing have). – Lisa B.
- Sensitivity to odors
“My poor intolerance to heat, smells and smoke. As I am suitably dressed and eager for a social gathering, the feeling of discomfort is manifested in abundant perspiration and a feeling of lightness due to the “heat” that my body perceives. Add the smell or smoke of a kitchen, whether at home or at the restaurant; the barbecue is my sworn enemy. I want to enjoy again my body refuses and others see me as a killjoy or just too difficult. “- Vee Vee Y.
- Feeling cold
“To be so cold. All the time. I live in Texas. During the summer, I wear sweaters and I always wear a jacket wherever I go. It is over 100 degrees so all places have air conditioning and I try to warm my hands up enough to feel like they are in them. “- Kristi R.
- Switches and muscle spasms
“Spasms. Almost constant shakes, some of which are huge and people give you funny looks, because you can not control your own body. “- Rhian S.
“My feet and legs will jerk off or contract. I often creak or scream when it happens because it hurts. People are watching and that makes me incredibly shy. I can not control it. “- Elyse B.
“The random spasms of the back that leave me unable to walk in the middle of a store. I do not like to be the center of attention and nothing shouts at me “look at me” like not being able to move. – Megan M.
“I have random muscle spasms. That leads me to drop a lot of things. – Danika S.
- Have “sniffles”
“The constant sniffing / coughing / dryness of the mouth caused by my medications. Really clumsy to be certain places and cough and sniff. When my sister had her baby, I held her and sniffed and some thought I was sick and holding a newborn baby! No! Sorry, just my drugs that make me sound like that! “- Garnet D.
- Sensitivity to touch
“When someone touches me, I always flinch because I know it’s going to hurt.” – Amanda P.
“When I have to tell people please do not give me a hug or a hello because it hurts too much.” – Audrey M.
- Muscle weakness
“Loss of grip and movement in my hand resulting in many abandoned pots. While shopping, I find myself in the middle, crying in frustration, no matter that I’m not able to open a can or a bottle of drink. – Ann W.
“When I’m in a push, my muscles become stiff and weak. I start walking funny and it becomes very difficult to open doors, bend, etc. People will be very worried and will ask what’s wrong – they just saw me and I was fine one day or just an hour ago. It’s shocking for them and almost impossible to explain. Then boom, a day, a week. I do not care what I will appear later. “- Katrina R.
- Difficulty speaking
“Can not speak. I forget the words, stumble over them, say words that make no sense. What’s worse is that I work with children and parents sometimes look at me and I feel so [stupid] not being able to smooth my thoughts. The simple act of typing this took me 15 minutes because I had to go back and rewrite words that had been misspelled or made no sense. – Marissa E.
“I mix words and it comes out so weird! People look at me strangely because it feels like [silly] sometimes. Fibro fog is the worst! Once, I continued to say potatoes instead of donuts. So embarrassing. “- Eloise T.
“Cerebral Fog … When I can not remember words. Maybe look at something and not be able to remember what it’s called. It’s right there on the tip of my tongue but the words do not come. “- Paula D.
“Incontinence! It’s super embarrassing, I have to wear pantyiners all the time. And as it is not serious enough, I have random bladder cramps. As if suddenly and out of nowhere, my bladder cramps and I have to go immediately. It caused me accidents. – Morgan V.
“I can pee every 15 minutes. I thought it was just me, I had no idea it was because of the fibro! Road trips are ab ****! “- Shelby LS
- Increased emotions
“With pain, when it’s really bad I get angry – at the pain, me and the others. I try to warn the people I work with on a bad day of pain, that if I burst crying or seem irritated, it’s not them, it’s pain. – Trish G.
“Gas …” says nuff. “- Cindy J.
- Respond to sudden pain
“The most em symptom
It is the fact that the lightning pains push me to change my expression and stop everything I do, whether I’m at work or with my family. When that happens, everyone notices the sudden change and then asks what’s wrong because I always look “fit” or “healthy”. – Katherine L.
“A spontaneous throbbing pain that is sometimes debilitating. I can have a perfect day and a sharp pain comes from nowhere, making me wince or even cry in pain. – DeAnna AC
“When my body crashes suddenly, or when I can not get up off the couch without making an embarrassing growl. I often wonder if people notice how much it requires me to do these things. »- Terri SA
“The exhaustion. I can not do anything too long or I’m so tired that it becomes painful to keep your eyes open. I had to reduce my working hours and I can barely get out of it. I need to take a nap to spend the day. “- Kirsten MR
“Exhaustion and seclusion. Fibromyalgia causes me to be severely exhausted and in my turn I separate because I am embarrassed that I can not go do things like meet friends and family for dinner after working all day. “- Koroleva V.
reference:22 “embarrassing” symptoms of fibromyalgia that are not talked about