If you live with a chronic illness such as fibromyalgia, you may be too familiar with the frustrating and undesirable symptoms it can cause. Although there is no reason to be 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 that 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 toward becoming aware of this complex and often misunderstood condition. That’s why we asked our powerful community to share some of the “embarrassing” symptoms of fibromyalgia they have experienced, symptoms that we may not talk about often, but that nevertheless deserve recognition and understanding.
Although the symptoms of fibro (as well as some side effects of medication) 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
“The fog Fibro takes the palm”. There is nothing more shameful to me than talking to someone on the phone, or really to anyone in general, and constantly using fill-in 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 impolite to ask what they said more than once because your brain may be talking gibberish.” – Dani S.
” Definitely brain fog. It is so shameful to lose my thread of thought in the middle of the sentence and be unable to maintain an intelligent conversation, or 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 the temperature of your own body is frustrating. ” – Rachel P.
” Sweating! The least amount of movement and I’m overheated and the sweat dripping down 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 from really bad hot flashes. It is embarrassing to suddenly start fanning or taking off certain clothing in an attempt to relieve discomfort. “- Emily G.
3. Need to cancel plans
” The most shameful part is having to cancel the plans because I do not feel well enough to leave. Eventually they label you 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. Sensory overdrive
” When there are too many people talking at the same time or too much noise, my head goes into an overload and I get so worked up that it could explode. It’s very hard to hide how it affects me. ” – Annie T.
” One thing I can not do much anymore is to look ‘The price is right’. There is too much noise and screams. And I’m getting to where I just can not see it like I used to. ” – Terri S.
5. Low energy
” 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 out of bed to do things with my children. ” – Skye L.
“The complete lack of energy. I understand that it is my fibro. Others just 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’m tired of my weight gain. I can not 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 interfere with my life constantly. 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 go 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 so sensitive to them. Not only for the embarrassing symptoms it brings, but also for cramps, headaches and outbreaks that accompany the intake 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’m constantly moving if I’m standing or I 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’m in an environment where I walk a lot, it’s embarrassing to have to take breaks because of my knees and hips. At age 23, people my age can be bothered by my need to stop smoking, and sometimes they ask me inquisitive 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 on my neck from the air. At some point it is only in one place, sometimes everything is over. When you’re in a place, people sometimes think I have a hickey. It is somewhat embarrassing. “- Krystina KF
10. Balance problems
” My balance. It has worsened and I have fallen when I should have been able to save myself; the one that was outside a friend’s house on her flower bed was the worst since she was surprised (I really do not know what I have). “- Lisa SECOND.
11. Sensitivity to odors
” My poor intolerance to heat, smells and smoke. As I am appropriately 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 party pooper 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 always have to wear a jacket wherever I go. It’s over 100 degrees, so every place has the AC set up and I’m trying to warm my hands up enough to feel in them “- Kristi R.
13. Muscle twitch and spasms
” Spasms. Almost constant twitches, some of which are huge and people look at you with grace, because you can not 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.
” Random back spasms that leave me unable to walk while I’m in the middle of a store. I do not like being the center of attention and nothing shouts at me “look at me” as if you could not move “. Megan M.
” I have muscle spasms at random. It makes me loose things a lot. ” – Danika S.
14. Have the “Sniffles”
” The constant inhalation / cough / dry mouth caused by my medications. Really uncomfortable for certain places and coughing and sipping. When my sister had her baby, I was holding her and sipping, and some thought she was sick and hugging a newborn baby! 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 back off because I know it’s going to hurt.” – Amanda P.
” When I have to tell people, please do not hug me or say goodbye because it hurts too much.” – Audrey M.
16. Muscular weakness
” Loss of grip and movement in my hand that results in numerous dropped flasks. While I’m shopping, I’m left in the middle crying in frustration, not caring if I can not 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, bend down, etc. People will worry a lot and ask what happens, they just saw me and I was fine one day or one hour ago. It is shocking to them and almost impossible to explain. Then boom, one day, one week. whatever it is later, I seem fine. “- Katrina R.
17. Difficulty speaking
” Not being able to talk. I forgot the words, I tripped over them, I said words that do not make 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 took 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 very weird! People look at me weird because it sounds so [foolish] sometimes. Fibro fog is the worst! Once I kept saying potatoes instead of donuts. So embarrassing. “- Eloise T.
” Brain fog … when I can not remember the words. I could be looking at something and not 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.
” Incontinence! It’s super embarrassing, I have to wear pantyliners all the time. And just like that is not bad enough, I have random bladder cramps. As suddenly and out of nowhere, my cramps in the bladder and I have to go immediately. It has caused 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 fibro! Road trips are ab ****! “- Shelby LS
19. Intensified emotions
” With pain, when it is 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 irritate, it’s not them, it’s the pain. ” – Trish G.
” Gas …” said nuff. “- Cindy J.
21. Reacting to sudden pain
” The most embarrassing symptom is the sudden throbbing pain that makes me automatically change my expression and stop doing whatever I do, whether I’m 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 sometimes is debilitating”. I can have a perfectly good day and a sharp pain comes from nowhere, making me shudder or even cry out in pain. ” – DeAnna AC
” When my body suddenly closes, or when I can not get off the couch without making an embarrassing growl. I often wonder if people realize how much effort it takes for me to do these things. ” Terri SA
” Exhaustion. I can not do anything for too long or I get tired so much that it’s painful for me 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 embarrassed not to be able to do things like meet friends and family after working all day “. – Koroleva V.