If you live with a chronic condition such as fibromyalgia, you may be too aware of the frustrating and unwanted symptoms it can cause. Although there is no reason to be ashamed of the symptoms or side effects that you feel, it can still be embarrassing when brain fog makes you forget what you said in the middle of an important work meeting, or a sudden relief of pain 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 towards becoming aware of this complex and often misunderstood disease. . That’s why we asked our powerful community to share some of the “embarrassing” symptoms of fibromyalgia that they have known, symptoms that we may not often talk about, but that nevertheless deserve to be recognized and understood.
Although the symptoms of fibro (as well as some of the side effects of the medications) may be totally out of control, it can be difficult to cope with the physical, emotional and cognitive effects that fibro can cause. If you have problems with any of the following symptoms, be aware that you are not alone.
This is what our community told us:
1. Brain Fog
“The fog Fibro takes the palm”. There is nothing more shameful for me than talking to someone on the phone, or really to anyone in general, and constantly using fill words because I can not find the words. that I have to express during the conversation. I use many post-it notes and set reminders for almost everything. “- Abeille E.
” Not being able to handle what someone tells you and then seem rude to ask what they have said more than once because your brain may be talking gibberish.” – Dani S.
” Certainly a brain fog. It’s so shameful to lose the thread of my thoughts in the middle of the sentence and not be able to have an intelligent conversation or completely forget something someone told me. It’s horrible. “- Molly S.
2. transpiration excessive
” For me, I think it’s excessive sweating for no apparent reason. The inability to regulate your body temperature is frustrating. “- Rachel P.
” Sweating! The least movement possible and I am overheated and sweat dripping on my face. I am everywhere at work and always burning. It’s very cold outside and the other girls have an extra 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 very bad hot flashes. It is embarrassing to suddenly start fanning or taking off some clothes to try to relieve the discomfort. “- Emily G.
3. Need to cancel plans
” The most shameful thing is to cancel the plans because I do not feel good enough to leave. Finally, they call you “this person” “- Lauren H.
” It’s 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. Sensory overdrive
” When there are too many people talking at the same time or too much noise, my head is overloaded and I’m so upset that it can explode. It’s very difficult to hide how it concerns me. “- Annie T.
” One thing I can not do is watch” The price is right “. There is too much noise and shouting. And I arrive at a place where I can not see it as before. “- Terri S.
5. Low energy
” Sometimes I do not have enough energy to do simple things, like taking a shower or preparing dinner for my kids or even a few days. I can not get out of bed to do things with my kids. “- Skye L.
“The total lack of energy. I understand that it’s my fibro. Others only see lazy people. “Michelle P.
” Fatigue. When it strikes, I have to sit down immediately, no matter where I am. “- Lisa T.
6. Fluctuations in weight
“I’m tired of my weight gain. I can not shake him and I am ashamed when I see people who knew me before. “Leah M.
7. gastrointestinal symptoms
” Gastrointestinal problems. I am still 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 past Thanksgiving, I had to sit down and watch everyone eat. I was too terrified to eat myself because of diarrhea. It never ends. Sometimes I spend days without eating because of that. “- 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 for the embarrassing symptoms it brings, but also for the cramps, headaches and epidemics that accompany the consumption of “bad food” “- Ashley A.
8. Musculoskeletal pain
” Back and leg pain.” 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 are literally giving up! “- Meena N.
” I like being active and visiting places like the zoo or amusement parks with friends. But when I walk a lot, it’s embarrassing to have to take breaks because of my knees and hips. At 23, people my age may be disturbed by my need to quit. Sometimes they ask me curious looks from older people or comments like “you’re too young to have these pains”. Usually, I try to work as hard as I can, but it only makes the pain worse when I finally make a cave and take a break. Shelby C.
9. Eruptions / ruches
” The red rash on my neck seen from the sky. At one point, it’s only in one place, sometimes everything is over. When you are at a place, people sometimes think that I have a hickey. It is a bit embarrassing. “- Krystina KF
10. Balance problems
” My balance. He got worse and I fell while I could have saved myself; The one in front of a friend’s house on her flowerbed was the worst since her astonishment (I really do not know what I have). “- Lisa SECOND.
11. Sensitivity to odors
” My weak intolerance to heat, smells and smoke. As I am dressed appropriately and eager to attend a social gathering, the feeling of unease begins with intense sweating and dizziness due to the “warmth” perceived by my body. Add the smell or smoke of a kitchen, at home or at the restaurant; the barbecue is my sworn enemy. I want to enjoy it, but my body refuses and the others see me as party 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 I always wear a jacket wherever I go. It is over 100 degrees, so air conditioning is installed in all places and I try to warm myself 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 can not control your own body. “- Rhian S.
” My feet and legs will tremble or contract. I often scream or scream when it happens because it hurts. People look at me and make me incredibly aware of myself. I can not control it “- Elyse B.
” Random spasms on the back that make me unable to walk while I’m in the middle of a shop. I do not like to be the center of attention and nothing shouts “look at me” as if you could not move. Megan M.
” I have muscle spasms at random. It makes me lose a lot of things. “- Danika S.
14. have “sniffles”
” Constant inhalation / cough / dry mouth caused by my medication. Really uncomfortable for some places and cough and sip. When my sister had her baby, I held her in my arms and I drank. Some thought she was sick and she was hugging a newborn baby! No! I’m sorry, only my meds make me sound like that! “- Garnet D.
15. Touch sensitivity
” When someone is going to touch me, I always go back because I know it’s going to hurt.” – Amanda P.
” When I have to tell people, please, do not take me in your arms and do not say goodbye because it hurts too much.” – Audrey M.
16. muscle weakness
” Loss of adhesion and movement in the hand, causing the fall of many flasks. While shopping, I’m in the middle crying in frustration, not caring about not being able to open a can or bottle of drink. “- Ann W.
” When I’m in a rash, my muscles become stiff and weak. I start walking weird and it becomes very difficult to open the doors, to 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’s shocking for them and almost impossible to explain. Then boom, a day, a week. anything later, I seem to be fine. “- Katrina R.
17. Difficulty speaking
” Can not speak. I forgot the words, I stumbled on them, I said words that do not make sense. What’s worse is that I work with children and my parents sometimes look at me and feel so stupid that I can not express my thoughts without problems. It took me 15 minutes because I had to rewrite misspelled or meaningless words. “- Marissa E.
” I mix the words and it comes out very weird! People look at me strangely because it seems so [silly] sometimes. The fibro fog is the worst! Once I repeated the potatoes instead of donuts. So embarrassing. “- Eloise T.
” Cerebral Fog … when I can not remember the words. I could look at something without being 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.
18. Incontinence
” Incontinence! It’s super annoying, I have to wear panties all the time. And just as it is not enough, I have bladder cramps at random. Like suddenly and nowhere, my cramps in the bladder 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 did not know it was because of fibro! The journeys on the road are ab ****! “- Shelby LS
19. intense emotions
” With pain, when it’s really bad I get angry, for pain, myself and 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. Respond to sudden pain
” The most embarrassing symptom is the sudden nagging pain that makes me change my expression automatically and stop doing what I do, whether I’m at work or with my family. When this happens, everyone realizes the sudden change and then asks what’s going on because I always look “fit” or “healthy”. – Katherine L.
“Pain of spontaneous blows sometimes debilitating”. I can have a very good day and a great pain comes from nowhere, making me shiver or scream in pain. – DeAnna AC
” When my body suddenly closes, or when I can not 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
21. exhaustion
” Exhaustion. I can not do anything for too long or I get so tired that it’s painful for me to keep my eyes open. I had to reduce my hours back to work and I barely did it. I have to take a nap to spend the day. “- Kirsten MR
” Exhaustion and isolation. Fibromyalgia causes me great fatigue and, in my turn, I am confined because I am embarrassed at not being able to do things like meeting friends and family after working all day “. – Koroleva V.
