If you live with a chronic condition like fibromyalgia, you may be well aware of the frustrating and unwanted symptoms it can cause. Although there is no reason to be ashamed of the symptoms or side effects you feel, it can be embarrassing when brain fog makes you forget what you said in the middle of an important work meeting, or sudden pain relief makes you fall. . The dishes you kept in the kitchen.
While it may be difficult to talk about the less prestigious symptoms that fibro can cause, being honest and open about the many ways it can affect a person is an important step in becoming aware of this complex and often ill disease. understood. . That is why we asked our powerful community to share some of the “embarrassing” symptoms of fibromyalgia that they have come across, symptoms that we may not talk about often, but that nevertheless deserve to be recognized and understood.
Although fibro symptoms (as well as some of the side effects of medications) may be totally out of control, it can be difficult to deal with the physical, emotional, and cognitive effects that fibro can cause. If you are having trouble with any of the following symptoms, be aware that you are not alone.
This is what our community told us:
1. Brain Fog
“The fibro fog takes the palm away.” There’s nothing more embarrassing for me than talking to someone on the phone, or really someone in general, and constantly using filler words because I can’t find the words. that I have to express during the conversation. I use a lot of post-it notes and set reminders for almost everything. – Abeille E.
“Not being able to handle what someone says to you and then it seems rude to ask them what they have said more than once because your brain may be speaking ill of everyone.” – Dani S.
“Certainly a brain fog. It is so embarrassing to lose the thread of my thoughts in the middle of the sentence and not to be able to have an intelligent conversation or completely forget something that someone told me. It is awful. “- Molly S.
2. Excessive perspiration.
“For me, I think it’s excessive sweating for no apparent reason. The inability to regulate your body temperature is frustrating. – Rachel P.
Sweat! The least movement possible and I’m overheated and sweat dripping on my face. I am everywhere at work and always on fire. It’s very cold outside and the other girls have an additional 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 suffer from very hot flashes. It is embarrassing to suddenly fan or remove your clothes to try to ease the discomfort. – Emily G.
3. Need to cancel plans
“The most embarrassing thing is to cancel the plans because I don’t feel well enough to leave.” Finally, they call you “this person” “- Lauren H.
“It is embarrassing for me to cancel projects without notice. Pain and / or fatigue are more important than I can handle on certain days and I have to cancel something I really wanted to do. – Jan SP
4. Overdrive sensorial
“When there are too many people talking at the same time or too much noise, my head is overloaded and I am so upset that it can explode. It is very difficult to hide what worries me. – Annie T.
“One thing I can’t do is watch ‘The price is right.’ There is too much noise and screaming. And I come to a place where I can’t see it like before. “- Terri S.
5. Low energy
“Sometimes I don’t have enough energy to do simple things, like showering or preparing dinner for my children or even some days.” I cannot get out of bed to do things with my children. – Skye L.
“The total lack of energy. I understand that it is my fibro. Others only see lazy people. Michelle P.
“Fatigue. When it hits, I have to sit down immediately, no matter where I am. “- Lisa T.
6. Fluctuations in weight.
“I am tired of my weight gain. I can’t shake it off and I’m embarrassed to see people who knew me before. Leah M.
7. gastrointestinal symptoms
” Gastrointestinal disorders. I still feel uncomfortable talking to my doctors about my gastrointestinal symptoms, whether it’s nausea, constipation, or diarrhea. “- Mattie M.
” I have diarrhea. My stomach problems are constantly interfering with my life. For last Thanksgiving, I had to sit down and watch everyone eat. I was too terrified to eat myself due to diarrhea. It never ends. Sometimes I go days without eating because of it. “- Melissa G.
“IBS [irritable bowel syndrome] and all the beauty that goes with it . I have to avoid certain foods just because I have become very sensitive to these foods. Not only because of the embarrassing symptoms it brings, but also because of the cramps, headaches, and epidemics that accompany the consumption of “bad food” “- Ashley A.
8. Musculoskeletal pain
“Back and leg pain”. I cannot 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 are literally abandoned! “- Meena N.
“I like to be active and visit places like the zoo or amusement parks with friends. But when I walk a lot, it’s embarrassing to have to take breaks due to my knees and hips. At age 23, people my age can be teased about my need to resign. Sometimes they ask me for curious looks from older people or comments like “you are too young to have these pains.” Usually I try to work as hard as I can, but the pain only gets worse when I finally make a cave and take a break. Shelby C.
9. Rashes / wrinkles
“The red rash on my neck seen from the sky. At one point, he’s only in one place, sometimes it’s all over. When you’re in a place, people sometimes think I have a hickey. It is a little embarrassing. “- Krystina KF
10. Balance problems.
”My balance. It got worse and I fell while I was able to save myself; The one in front of a friend’s house in his flowerbed was the worst since his amazement (I really don’t know what I have). “- Lisa SECOND.
11. Sensitivity to odors.
”My weak intolerance to heat, odors and smoke. By dressing appropriately and wanting to attend a social gathering, the feeling of restlessness begins with intense sweating and dizziness due to the “heat” perceived by my body. Add the smell or smoke from a kitchen, at home or in the restaurant; The barbecue is my sworn enemy. I want to enjoy it, but my body refuses and others see me as a party or just too demanding. “- Vee Vee Y.
12. to be cold
“To be so cold. All the time. I live in texas. During the summer, I wear sweaters and always wear a jacket wherever I go. It is over 100 degrees, so air conditioning is installed everywhere and I try to warm up enough to feel good. “- Kristi R.
13. Muscle contractions and spasms.
Spasms. Almost constant movements, some of which are huge and people look at you gracefully, because you cannot control your own body. – Rhian S.
My feet and legs will shake or contract. I often scream or scream when it happens because it hurts. People look at me and make me incredibly self-aware. I can’t control it ”- Elyse B.
“Random spasms in my back that prevent me from walking while 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 have random muscle spasms. It makes me lose many things. “- Danika S.
14. has “sniffles”
Constant inhalation / cough / dry mouth caused by my medication. Really uncomfortable for some places and coughs and sips. When my sister had her baby, I held her in my arms and drank. Some thought she was sick and hugging a newborn baby! Do not! Sorry, only my medicines make me sound like this! “- Garnet D.
15. sensitivity to touch
“When someone is going to touch me, I always come back because I know it will hurt.” – Amanda P.
“When I have to tell people, please don’t take me in your arms and don’t say goodbye because it hurts too much.” – Audrey M.
16. muscle weakness
”Loss of grip and movement in the hand, causing many flasks to drop. As I shop, I’m half crying in frustration, not worrying about not being able to open a can or bottle of drink. “- Ann W.
“When I have a rash, my muscles become stiff and weak. I start to walk strangely and it becomes very difficult to open the doors, bend down, etc. People will worry a lot and ask what’s going on, they just saw me and I was fine a day or an hour ago. It is shocking to them and almost impossible to explain. Then boom, one day, one week. Nothing later, it seems to me to be well. – Katrina R.
17. Difficulty speaking.
” I can not speak. I forgot the words, tripped over them, said words that don’t make sense. What’s worse is that I work with children and that my parents sometimes look at me and feel so stupid that I can’t express my thoughts without problems. It took me 15 minutes because I had to rewrite the misspelled or nonsense words. “- Marissa E.
”I mix the words and it comes out really weird! People look at me strangely because sometimes it seems [silly] to me. The fibro fog is the worst! I once repeated the potatoes instead of the donuts. So embarrassing. – Eloise T.
“Brain fog … when I can’t remember the words. You could look at something without being able to remember what it is called. It’s right there on the tip of my tongue, but the words don’t come. – Paula D.
Incontinence! It’s super annoying, I have to wear panties all the time. And since it’s not enough, I have random bladder cramps. As suddenly and nowhere, my bladder cramps and I have to leave immediately. This caused accidents. Morgan V.
In fact, I can urinate every 15 minutes. I thought it was just me, I didn’t know it was because of fibro! Road trips are ab ****! – Shelby LS
19. intense emotions
“With pain, when it’s really bad, I get angry, for the pain, for myself and for others.” I try to warn the people I work with on a bad day of pain that if I cry or get angry, it’s not them, it’s pain. – Trish G.
20. Responds to sudden pain
“The most embarrassing symptom is sudden, persistent pain that causes me to automatically change my expression and stop doing what I do, whether at work or with my family. When this happens, everyone notices the sudden change and then asks what’s going on because I always look “fit” or “healthy.” – Katherine L.
“Pain from spontaneous blows sometimes debilitating.” I can have a very good day and great pain comes out of nowhere, making me shiver or scream in pain. – DeAnna AC
“When my body suddenly closes, or when I can’t get up off the couch without making an embarrassing growl. I often wonder if people realize how much effort it takes to do these things. “Terri sa
Exhaustion. I can’t do anything for a long time or I get so tired that it hurts to keep my eyes open. I had to cut my hours to get back to work and barely did it. I have to take a nap to get through the day. “- Kirsten MR
Exhaustion and isolation. Fibromyalgia causes me great fatigue and, in turn, I am confined because I am ashamed that I cannot do things like meeting friends and family after working all day. ” – Koroleva V.