22 ‘Shameful symptoms’ of fibromyalgia that we don’t talk about

If you live with a chronic disease such as fibromyalgia, you may be too familiar with the frustrating and undesirable symptoms it can cause. Although there is no reason to feel ashamed of any symptoms or side effects you experience, it can still be embarrassing when the brain fog makes you forget what you were saying in the middle of an important work meeting, or a sudden burst of pain makes you fall dishes you were saving in the kitchen.

While it may 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 towards becoming aware of this complex and often misunderstood condition. That is why we ask our powerful community to share some of the “shameful” fibromyalgia symptoms they have experienced, symptoms that we may not talk about often, but that nevertheless deserve recognition and understanding.

Although fibro symptoms (as well as some medication side effects) may be totally out of your control, it can be challenging to deal with the physical, emotional and cognitive effects that fibro can cause. If you have problems with any of the following symptoms, know 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 to me than talking to someone on the phone, or really to anyone in general, and constantly using filler words because I have trouble finding the words I need to convey during the conversation. I use many Post-it notes and set reminders for almost everything. “- Bee E.

” Not being able to process what someone is telling you and then seem rude to ask what they said more than once because gibberish may be talking to your brain.” – Dani S.

” Definitely brain fog. It is so embarrassing to lose my thread of thought in the middle of the sentence and to be unable to have an intelligent conversation, or to completely forget something that someone told me. It is awful. “- Molly S.

2. Excessive sweating

” For me, I think it’s excessive sweating for no apparent reason. The inability to regulate your own body temperature is frustrating. ” – Rachel P.

” Sweating!  The least amount of movement and I am overheated and sweat dripping down my face. I am everywhere at work and always burning. It is 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 from really bad hot flashes. It is embarrassing to start fanning suddenly or taking off certain clothes in an attempt to alleviate discomfort. “- Emily G.

3. Need to cancel plans

” The most embarrassing part is having to cancel the plans because I don’t feel well enough to leave. You are eventually labeled as ‘that person’ “- Lauren H.

” It is embarrassing for me to have to cancel plans without much notice. The pain and / or fatigue are more than I can bear some 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 once or too much noise, my head goes into an overload and I get so stressed that it could explode. It’s very difficult to hide how it affects me. ” – Annie T.

” One thing that I can’t do much anymore is to look at ‘The price is right.’ There is too much noise and screaming. And I’m getting to where I just can’t see it as I used to. ” – 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 complete lack of energy. I understand that it is my fibro. Others only see lazy. ” Michelle P.

” Fatigue. When it hits, I have to sit down immediately, regardless of where I am. ” – Lisa T.

6. Weight fluctuations

“I am tired of my weight gain. I can’t shake it and I’m ashamed when I see people who knew me before. ” Leah M.

7. Gastrointestinal symptoms

” Gastrointestinal problems. I always feel uncomfortable telling my doctors about my gastrointestinal symptoms, whether nausea, constipation or diarrhea. “- Mattie M.

” I have diarrhea. My stomach problems constantly interfere with my life. This past 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 spend days without eating for that. “- Melissa G.

” IBS [irritable bowel syndrome] and all the beauty  it  entails. I have to avoid certain foods just because I have become so sensitive to them. Not only because of the embarrassing symptoms that it brings, but also because of cramps, headaches and outbreaks that accompany the intake 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 am constantly moving if I am standing or have to lean over something. People think you’re lazy, but my legs literally want to give up! “- Meena N.

” I love being active and visiting places like the zoo or amusement parks with friends. But when I am in an environment where I walk a lot, it is embarrassing to have to take breaks due to my knees and hips. At 23, people my age can be bothered by my need to quit smoking, and sometimes they ask me inquiring looks from older people or comments like “you’re too young to have those pains.” Usually, I try to work as hard as possible, but that only makes the pain worse when I finally make a cave and take a break. ” Shelby C.

9. Eruptions / Beehives

” The red rash that I have on my neck from the air. At some point it is only in one place, sometimes everything is over. When in a place, people sometimes think I have a hickey. It is somewhat embarrassing. “- Krystina KF

10. Balance problems

” My balance. It has gotten worse and I have fallen when I should have been able to save myself; the one outside a friend’s house in his flower bed was the worst since he was surprised (I really don’t know what I have). “- Lisa SECOND.

11. Sensitivity to odors

” My poor intolerance to heat, smells and smoke. As I am properly dressed and anxious for a social gathering, then the feeling of discomfort begins with intense sweating and dizziness due to the ‘heat’ that my body is perceiving. Add the smell or smoke of a kitchen, either at home or in a restaurant; The barbecue is my nemesis. I want to enjoy, but my body refuses and others see me as a spoiler or just too demanding. ” – Vee Vee Y.

12. Feeling cold

” Being so cold. All the time. I live in texas. During the summer, I wear sweaters and I always have to wear a jacket wherever I go. It is over 100 degrees, so each place has the AC in place and I am trying to warm my hands enough to feel them ”- Kristi R.

13. Twitch muscle and spasms

” Spasms. Almost constant tweets, 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 will often scream or howl when it happens because it hurts. People look and make me incredibly self-conscious. I can not control it. “- Elyse B.

“ The random back spasms that leave me unable to walk while I am in the middle of a store. I don’t like being the center of attention and nothing yells at me “look at me” as if you couldn’t move “. Megan M.

” I have random muscle spasms. It makes me drop things a lot. ” – Danika S.

14. Have the “Sniffles”

” Constant inhalation / dry cough / mouth caused by my medications. Really uncomfortable for certain places and coughing and sipping. When my sister had her baby, I held her and sipped, and some thought she was sick and hugging a newborn! Do not! I’m sorry, only my medications 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 will hurt.” – Amanda P.

” When I have to tell people, please don’t hug me or say goodbye because it hurts too much.” – Audrey M.

16. Muscle weakness

” Loss of grip and movement in my hand that results in numerous fallen jars. While I go shopping, I stay in the middle crying in frustration, not caring that I can’t open a can or a bottle of drink. ” – Ann W.

” When I am in a rash, my muscles become stiff and weak. I start to walk weird and it becomes very difficult to open doors, duck, etc. People will worry a lot and ask what happens, they just saw me and I was fine one day or an hour ago. It is shocking to them and almost impossible to explain. Then boom, one day, one week. Whatever later, I seem fine. “- Katrina R.

17. Difficulty speaking

” Unable to speak. I forgot the words, stumbled upon them, said words that make no sense. What’s worse is that I work with children and parents just look at me sometimes and I feel so [dumb] not being able to convey my thoughts without problems. Simply writing this has taken me 15 minutes because I had to go back and rewrite words that were misspelled or made no sense. ” – Marissa E.

” I mix words and it comes out really weird! People look at me weird because it sounds so [dumb] sometimes. Fibro fog is the worst! Once I kept saying potatoes instead of donuts. So embarrassing “- Eloise T.

” Brain fog … when I can’t remember the words. I might be looking at something and not 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.

18. Incontinence

” Incontinence! It’s super embarrassing, I have to wear pantyliners all the time. And like that is not bad enough, I have random bladder cramps. As suddenly and out of nowhere, my bladder cramps and I have to go immediately. It has caused me accidents. ” Morgan V.

” In fact, I can urinate every 15 minutes. I thought it was just me, I had no idea it was because of the fiber! Road trips are ab ****! “- Shelby LS

19. Enhanced Emotions

“ In pain, when it’s really bad, I get angry, because of the 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 irritated it is not them, it is the pain. ” – Trish G.

20. Gas

21. Reacting to sudden pain

“ The most embarrassing symptom is the sudden stabbing pain that causes me to automatically change my expression and stop whatever I do, whether I am at work or with my family. When that happens, everyone notices the sudden change and then asks what happens because I still look “fit” or “healthy.” – Katherine L.

“Pain of spontaneous shots that is sometimes debilitating.” I can have a perfectly good day and acute pain comes from nowhere, making me shiver or even 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 takes me to do these things. ” Terri SA

22. Exhaustion

” Exhaustion. I can’t do anything for too long or I get so tired that it is painful to keep my eyes open. I had to reduce my hours back to work and I barely made it. I need 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. ”

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