If you live with a chronic condition such as fibromyalgia, you may be very 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 a sudden relief of pain causes it to 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 that a person can be affected is an important step in becoming aware of this complex and often bad disease. understood. . That is why we ask our powerful community to share some of the “shameful” symptoms of fibromyalgia that they have known, 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 have problems with any of the following symptoms, keep in mind that you are not alone.
This is what our community told us:
1. Brain fog
“Fibro fog takes the palm.” There is nothing more embarrassing for me than talking to someone on the phone, or really with someone in general, and constantly using filler words because I can’t find the words. 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 it seems rude to ask him what he has said more than once because your brain may be talking badly about everyone.” – Dani S.
“Certainly a brain fog. It is so shameful to lose the thread of my thoughts in the midst of prayer and not 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 is excessive sweating for no apparent reason. The inability to regulate your body temperature is frustrating. “- Rachel P.
Sweat! The least possible movement and I am overheated and sweat dripping on my face. I am everywhere at work and always burning. It is 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 flushes. It is embarrassing to suddenly start fanning or taking off 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 shameful for me to cancel projects without prior 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 look” The price is right. ” There is too much noise and screaming. And I get to a place where I can’t see it as 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 can’t 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 and I’m ashamed 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 nausea, constipation or diarrhea. “- Mattie M.
” I have diarrhea. My stomach problems are constantly interfering with my life. For the past Thanksgiving, I had to sit down and watch everyone eat. I was too terrified to eat because of diarrhea. It never ends Sometimes I spend days without eating for it. “- Melissa G.
“IBS [irritable bowel syndrome] and all the beauty that entails . 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 can’t 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’re lazy, but my legs are literally abandoned! “- 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 can be bothered by my need to quit. 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 it only gets worse when I finally make a cave and take a break. Shelby C.
9. Eruptions / wrinkles
“The red rash on my neck seen from the sky. In a moment, it’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 bit embarrassing. “- Krystina KF
10. Balance problems.
“My balance. It got worse and I fell while I could save myself; The one in front of a friend’s house in his flowerbed was the worst since his astonishment (I really don’t know what I have). “- Lisa SECOND.
11. Sensitivity to odors.
”My weak intolerance to heat, smells and smoke. By dressing properly and wanting to attend a social gathering, the feeling of restlessness begins with intense sweating and dizziness due to the “heat” that my body perceives. Add the smell or smoke of 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 simply 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 has more than 100 degrees, so the air conditioning is installed in all places 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 with grace, because you can’t 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 aware of myself. I can’t control it “- Elyse B.
“Random spasms in the back that prevent me from walking while I am in the middle of a store. I don’t like being the center of attention and nothing screams “look at me” as if you couldn’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 I was sick and was hugging a newborn baby! Do not! I’m sorry, only my medicines make me sound like this! “- Garnet D.
15. touch sensitivity
“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 so much.” – Audrey M.
16. muscle weakness
”Loss of adhesion and movement in the hand, causing the fall of many flasks. While I buy, I’m in the middle of crying in frustration, without worrying about not being able to open a can or a bottle of drink. “- Ann W.
“When I have a rash, my muscles become stiff and weak. I start to walk weird and it becomes very difficult to open the doors, duck, etc. People will worry a lot and ask what is happening, 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, seems fine. “- Katrina R.
17. Difficulty speaking.
” I can not speak. I forgot the words, stumbled upon them, said words that make no sense. What is worse is that I work with children and that my parents sometimes look at me and feel so stupid that I cannot express my thoughts without problems. It took me 15 minutes because I had to rewrite the misspelled or meaningless 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. Fibro fog is the worst! Once I repeated the potatoes instead of the donuts. So embarrassing “- Eloise T.
“Brain fog… when I can’t remember the words. I could look at something without remembering its name. 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 for fibro! Road trips are ab ****! “- Shelby LS
19. intense emotions
“With the 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, they are not them, it is pain. “- Trish G.
20. Respond to sudden pain
“The most embarrassing symptom is the sudden and persistent pain that makes me change my expression automatically and stop doing what I do, whether at work or with my family. When this happens, everyone realizes the sudden change and then asks what is happening because I always look “fit” or “healthy.” – Katherine L.
“Pain of sometimes debilitating spontaneous blows.” I can have a very good day and great pain comes from nowhere, making me shiver or scream in pain. – DeAnna AC
“When my body suddenly closes, or when I can’t get off the couch without making an embarrassing growl. I often wonder if people realize how much effort it costs 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 reduce my hours to get back to work and just did it. I have to take a nap to spend the day. “- Kirsten MR
”Exhaustion and isolation. Fibromyalgia causes me great fatigue and, in turn, I am confined because I am ashamed to not be able to do things like meeting friends and family after working all day. ” – Koroleva V.