“shameful” symptoms of fibromyalgia that we’re not talking about

Paige Wyant

If you live with a chronic condition such as fibromyalgia, you may be familiar with the frustrating and unwanted symptoms it can cause. Although there is no reason to be ashamed of the symptoms or side effects you have, it can still be embarrassing if a fog in your brain makes you forget what you said during an important meeting or a sudden explosion of suffering from the dishes that you keep in the kitchen.

Although it may be difficult to talk about the less fascinating symptoms that fibro can produce, being honest and open about the many ways in which this person can influence is an important step in increasing awareness of this complex and often misunderstood disease. That is why we ask our powerful community to share some of the “embarrassing” symptoms of fibromyalgia that they have experienced, symptoms that we can not talk about frequently, but that deserve to be recognized and understood.

Although fibro symptoms (and some side effects of medications) may not be under your control at all, it can still be difficult to treat the physical, emotional and cognitive effects that fibro can cause. If you have any of the following symptoms, keep in mind that you are not alone.

See what our community has told us:

  1. Fog of the brain
    “The fog of Fibro takes my cake. There is nothing more embarrassing than talking to someone on the phone or with someone in general, and constantly using fill-in words because I find it difficult to find the words I’m looking for. You have to talk to me during the conversation. I use a lot of post-it and memories for almost everything. “- Bee E.

“When you can not deal with what someone says to you, then ask rudely what you have said more than once, because you can also talk nonsense to your brain.” – Dani S.

“Absolutely brain fog. It is so shameful to lose my thought in the middle of prayer and not be able to maintain an intelligent conversation, or forget something that someone has told me. It’s terrible “- Molly S.

  1. excessive perspiration
    “I think it’s an exaggerated sweating for no apparent reason. The inability to regulate the temperature of your own body is frustrating. “- Rachel P.

“Sweat! The least amount of movement and I’m overheated and sweat runs down my face. I am everywhere at work and it always burns me. It freezes outside and the other girls have additional heating next to them and here I die with a fan on me! “- Christina K.

“As a 27-year-old woman with fibromyalgia and endometriosis, I often suffer from very strong heat waves. It is shameful to shake or wear clothing to reduce discomfort. “- Emily G.

  1. Need to cancel plans
    “The most shameful part is that I have to cancel the plans because I do not feel well enough to leave. Finally, you will be labeled “this person”. – Lauren H.

“It’s embarrassing for me to have to cancel the plans with little attention. The pain and / or fatigue is more than I can bear for a few days and I have to cancel something I really wanted to do. “- Jan SP

  1. Sensory overdrive
    “When there are a lot of people talking at the same time or with a lot of noise, my head is running and I am so stressed as if I could explode.” It’s so hard to hide how it affects me. “- Annie T.

“One thing I can not do is look” The price is right “. There is a lot of noise and shouting. And I get to where I can not look before. “- Terri S.

  1. low power
    “Sometimes I do not have enough energy to do simple things, like showering or preparing dinner for my children, or even a few days, I can not get up to do things with my children.” – Skye L.

“The total lack of energy. I understand that it is my fibro. Others only see laziness. “- Michelle P.

“Fatigue. If that is the case, I should sit down immediately, wherever I am. “- Lisa T.

  1. Weight drum rings
    “I’m tired of my weight gain. I can not get away from that and I’m ashamed to see people who knew me before. “- Leah M.
  2. Gastrointestinal symptoms.
    ” Gastrointestinal disorders. I always feel weird when I tell my doctors about my digestive symptoms, be it nausea, constipation or diarrhea. “- Mattie M.

” I have diarrhea. My stomach problems constantly disturb my life. On this last Thanksgiving I had to sit down and watch how everyone ate. I was too scared to eat because of the diarrhea. Never ends Sometimes I spend days without eating. “- Melissa G.

“IBS [irritable bowel syndrome] and all the beauty it implies. I have to avoid certain foods just because I became very sensitive to them. Not only for the embarrassing symptoms, but also for the cramps, headaches and outbreaks that occur when you eat “bad food”. “- Ashley A. Musculoskeletal pain
“Pain in the back and legs. I can not sit, stand or walk for more than 30 minutes at a time. I am constantly in motion, either standing or supporting something. People think you’re lazy, but my legs literally want to admit! “- Meena N.

“I love being active and going to places like the zoo or the amusement parks with friends. But if I am in an environment where I walk a lot, it is shameful to have to rest because of my knees and my hips. At the age of 23, people my age can be bothered by my need to stop smoking and, sometimes, I doubt the appearance of elderly people or comments like “you are too young to have these pains”. I usually try to push myself to the maximum, but it only makes the pain worse when I step back and take a break. “- Shelby C.

  1. rash / urticaria
    “The red rash on my neck comes from nowhere. Sometimes it is only at a given moment, sometimes it ends. When it is at some point, people sometimes think I have a hickey. It is quite shameful. “- Krystina KF
  2. Balance problems.
    “My balance. It got worse and I fell while I could have been saved; the one who was out of a friend’s house in her bed was the worst, because she was startled (she really does not know what I have). “- Lisa B.
  3. Sensitivity to odors.
    “My poor intolerance to heat, smell and smoke. As if I were well dressed and longed for a social gathering, the feeling of discomfort comes into action with a lot of sweat and dizziness as a result of the “heat” that my body observes. Add the smell or smoke from the kitchen, at home or in the restaurant; The barbecue is my enemy. I want to enjoy it and, nevertheless, my body refuses and others see me as a spoiler or simply difficult. “- Livestock Cattle Y.
  4. I’m cold
    “To be so cold. I live in Texas all the time. During the summer I wear sweaters and always wear a jacket wherever I go. It has more than 100 degrees, so each place has alternating current and I try to warm my hands to feel warm. “- Kristi R.
  5. Muscle contractions and spasms.
    “Spasms. Almost in the vicinity of constant contractions, some of which are huge and people give you a nice appearance, because you can not control your own body. “- Rhian S.

“My feet and legs will move or move. I usually scream or scream when it happens because it hurts. People look and I’m very embarrassed. I can not control it. “- Elyse B.

“The random spasms that prevent me from walking in the middle of a store. I do not like being the center of attention and nothing calls me “look at me” as if I could not move. “- Megan M.

“I have random muscle spasms. It makes me fall a lot. “- Danika S.

  1. They have “sniffed”
    “Constant laziness / cough / mouth dries up through my cures. Really uncomfortable being certain places and coughing and smelling. When my sister had her baby, I kept on smelling her and some thought she was sick and I had a newborn baby! Do not! I’m sorry, only my medication makes me sound like that! “- Granada D.
  2. Sensitivity to touch.
    “When someone touches me, I always come back because I know it’s going to hurt me.” – Amanda P.

“If I have to tell people, please, do not hug me, because it hurts too much.” – Audrey M.

  1. Muscular weakness
    “Loss of grip and movement in my hand, resulting in several discarded pots. When I’m shopping, I’m in the middle of a scream of frustration, although I can not open a can or a bottle of drink. “- Ann W.

“When I am in an epidemic, my muscles become stiff and weak. I start to walk in a fun way and it becomes very difficult to open doors, fold, etc. People will be very worried and ask what is wrong: they just saw me and it went well, an hour or just an hour ago. It is shocking to them and almost impossible to explain. Then boom, one day, one week. I will look much later. “- Katrina R.

  1. Difficult to talk
    “You can not talk. I forget the words, stumble, I say words that do not make sense. The worst thing is that I work with children and that parents sometimes look at me and I feel so stupid that I can not transmit my thoughts calmly. Just typing took 15 minutes because I had to go back and rewrite the words that were recorded incorrectly or incorrectly. “- Marissa E.

“I mix words and it’s so strange! People look at me strangely because sometimes it seems so stupid. The fibrous haze is the worst! I used to say potatoes instead of donuts. So embarrassing “- Eloise T.

“Brain Mist … if I can not remember words. You can look at something and not remember what is mentioned. It is only on the tip of the tongue, but the words do not come. “- Paula D.

  1. incontinence
    “Incontinence! It’s very embarrassing, I always have to wear pantyhose. And since it’s not serious enough, I have random colic in the bladder. As suddenly and out of nowhere, my cramps contract and I have to leave immediately. It has caused accidents. “- Morgan V.

“I can urinate every 15 minutes. I thought it was me, I had no idea it was fibro! The car trips are very good! “- Shelby LS

  1. high emotions
    “Because of the pain, when it’s a shame, I get angry with the pain, me and the others. I try to warn the people I work with on a bad day, that if I start crying or I see myself angry, they are not, it’s pain. – Trish G.
  2. gas
    “Gás …”, said Nuff. – Cindy J.
  3. Respond to sudden pain
    “The most embarrassing symptom is the sudden blow that automatically changes my expression and stops what I do, at work or with my family. When this happens, everyone realizes the sudden change and then asks what is wrong, because I always see myself “fit” or “healthy”. – Katherine L.

“Spontaneous pain sometimes debilitating. I can have a perfect day and the sharp pain comes from nowhere, making me tremble or even cry because of the pain. “- DeAnna AC

“When my body suddenly hangs up, or when I can not get off the couch without making an embarrassing growl. I often wonder if people notice how much effort it costs to do these things. “- Terri SA

  1. Exhaustion
    ” The depletion. I can not do anything for a long time or I’m so tired that it hurts to keep my eyes open. I had to shorten my working hours and I almost did not succeed. I have to take a nap to spend the day. “- Kirsten MR

“Exhaustion and isolation. Fibromyalgia exhausts me a lot and the isolations make me come back because I am not ashamed to be able to find things like friends and family to have dinner after a whole day of work. “- Koroleva V.

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