17 'Embarrassing Symptoms' of Fibromyalgia We Don't Talk About

There is nothing about fibromyalgia that’s not embarrassing. We walk around in a constant state of apology. Sorry I’m…. walking too slow in front of you … getting up every 2 hours at night and disturbing you … in bed all weekend so that I can garner energy to get through next week … making you repeat yourself because I cannot comprehend what you’re trying to say , odor , assistance , itching , mobility , zero libido. Knowing everyone around me now sees me “less than”.

Stopping in the middle of a sentence and not being able to finish. Staring into space during a conversation because my brain can’t keep up to process and form a response. Feeling stupid. Being “sick” so frequently with flue like symptoms that knock me out and being judged as weak or feigning illness. Running into door frames when trying walk through a doorway. Knocking things over or dropping things I thought I had a grip on. Not remembering names. Being accused of being a drug seeker because a person can’t understand that someone with Fibro legitimately has so much constant pain

So we have asked a question to share some of the embarrassing symptoms of fibromyalgia they have gone through to our support community “Living with Fibromyalgia and Chronic Illness”. These symptoms also need recognition and spot light. Most of them has Falling, loosing thoughts, bladder issues, constipation which they take it as embarrassing. We have enlisted their views below. To Join our support community for venting,Discussions, Question answers Click Here

Here is what community shares with us:

1. Stuttering

Meghan Emily Agresti-Tobin said I stutter when I’m in pain or stressed. I had a stutter as a child, but it went away until this past year. If I’m in more than normal amounts of pain, or if I’m stressed because of fibro fog; I stutter to the point that I just give up on what I was trying to say. It’s led to me becoming more of a homebody. Becca Ellis added that I stutter as well but its anxiety related. Only happens with people i don’t know but it is super embarrassing.

Also Read “How does Fibromyalgia affects Speech”

2. Balance

Nadene Taylor Springer share that The sudden without warning falling out and I no longer can get up. Emma Ogden also added to it that Balance problems , tripping or falling over nothing I look like I’ve had a drink so people ignore me on the floor

3. Bladder Control

More than 100 of members have listed this in embarrassing symptom. Peeing on myself have no bladder control any more. Lots of member have tell us that they have bladder control issues and its so embarrassing . Janey Dee says Loss of bladder control when it’s very cold. Or near misses. Absolutely awful.

4. In-ability to make Plan (or Cancelling Plans)

Gwenn Dombroski Karten says The most embarrassing thing for me is the inability to make plans ahead or commitments because I never know how I will feel and how much energy and pain I will have on any one day. I have lost friends because I won’t commit and I appear “wishy washy”. Some days I can only sit. What kind of life is it?. Debbie Shaw added to it that This is so true. Some of my friends have even made the decision for me that I probably, “Couldn’t go anyway.” They r making decisions for me & leaving me out! Then I see their pics of having fun on Facebook & I just start crying. Its not jealousy. It’s just realizing that Fibro has taken another part of my life!

Carrie Tremper says Not being able to commit to plans in the future and canceling last minute. My friends and family understand, mostly, but I still come off as a flake and unreliable. I’m not unreliable, my body is.

5. IBS

Lori Mahone says: IBS is embarrassing. Especially when you’re out on a date with someone new, and it hits while you are still eating dinner! Read more Here.

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6. Sweating

Leslie Bellao says, I can be fine talking, sitting…anything and it seems that a faucet is turned on on top of my head. My hair ends up dripping…..it is so embarrassing.

Dayla Lorenz shares The sweating make me smell stronger than i think i should smell ,i use a lot of deodorant. Debbie Hedgecoke sums up by this “When the sweat runs in rivers down my face”

Liana Gettel says The hot flashes. I’ll turn beat red and feel like I’m on fire ?. It happens a lot. People at my office are constantly complaining about how cold it is and I’m running my fan and turning all the thermostats down around the office.

Diana Pierce says Sweating all of a sudden. Doesnt matter if I’m relaxing or shopping etc. ,all of a sudden my hair is wet and sweat dripping off my face.It is embarrassing and gross. I also have to stop talking because I forget what I was saying.

7. Inability to Talk (Dyslexia)

Jenny Crowson Lucas says I speak words like someone reads with dyslexia. I say things backwards, but I don’t know I do. It won’t be the whole sentence just a few of the words!! Very embarrassing!!

Cindy Dixon says: Loss of words is the most embarrassing symptom of Fibromyalgia because it’s almost impossible to hide from others. Not being able to speak words mid-sentence makes me feel stupid, it makes me feel like the person I’m speaking to thinks that I am stupid. Loss of one word leads to another and then another as I then totally loose my train of thought and start speaking with my hands and the other person starts trying to fill in my blank words as if we’re playing charades. Panic sets in usually as my mind feels like someone has taken my head off my shoulders and shaken it vigorously before putting it back on. Speech gets slurred and thoughts don’t come together for conversation. It’s easier to just sit back in silence or just avoiding socializing altogether.

Amber Singletary Barratta says I cannot speak. I sound like I’m talking like a baby, babbling/mumbling all the time. Always at a lot for words as well. And incontinence.

8. Clogged nasal n post nasal drip

Clogged nasal n post nasal drip …. sore throat ,and tonsil stone’s are also the embrassing part of fibro

9. Dropping or Losing Hand Grip

Getting uncontrollable shakes in my hands. I have to grab it so no one would notice

10. Brain Fog

The brain fog and the fatigue. Nothing is more frustrating than searching your brain for a word and coming up with nothing so you have to just stop your story. Fatigue because it’s embarrassing to constantly have to change plans or worse cancel plans constantly because you’re too tired to go.

Sandy Maclean says: Forgetting words, names of characters in films; names of films!? So frustrating!

Also Read: Forgetting and Fibro, ways to deal with it

Teresa Chesney says: Brain fog when you know what you want to say but can’t gather the words to do so,or to pronounce a word that you know as well as your name.

Michelle Mathews says: Fibro Fog is the absolute worst, forgetting what your doing,forgetting names, it is embarrassing when out been in tears several times for not being able to articulate something and not remember.

Also read “How to describe “Fibro Fog” to someone who doesn’t understand”

12. Interrupting Others.

I do that all the time too. I never thought it was anxiety but it is. I fear I won’t be heard.

Debbie Shaw says :I interrupt people all the time now. I’m so full of anxiety. I can’t wait for people to finish a sentence. So rude of me!!!

Crystal Alana Maelstrom says: it’s like while you know you can function and think clearly you want to get it all out before your brain and body goes “dunh duh duh” on you again…like by doing that you are saving yourself the embarrassment of looking retarded, but in your hurry to get it out…you come across as rude…most frustrating.

13. Dark Circles

Nearly black eyes and I don’t mean the eyes itself I mean around them it looks like someone punched me. yes the permanent dark circles…like you never sleep …or are very deathly ill…

Ann Holt Green says : Face neck turn bright red i think its internal hot flashes or inflammation. Read More on “Role of inflammation in Fibromyalgia” Here

14. Muscle Spasm

Heidi Ellis says: I’ve been driving on the road when all of the sudden my leg(s) get weak, start to spasm and lock up. Then I need to pull off the side of the road until it stops. It’s scary!. Read More on “How to live on Muscle Spams with Fibromyalgia” Here.

15. Hot Spots

Hot spots or that’s what I call them. I can randomly get bright red splotches on my face, neck, chest and arms. It can happen when I’m upset but at times it’s without warning. It’s very embarrassing to have it happen while out in public. It looks like I’ve been slapped in the face. It is horrible.. so embarrassing feel like ya need to cover up but in reality you are burning up.. so you cant. Face neck turn bright red i think its internal hot flashes or inflammation

16. Inability to Express

Leslie Lehmann says: The inability to tell someone “where it hurts worse.” It’s a whole symphony of pain and I really can’t pick out just one instrument. The cognitive dysfunction doesn’t help, either. Even if I could pick one part of the pain and call it worse, I probably wouldn’t be able to describe it.

For instance, if I sweat and then the slightest breeze hits it and I get a chill…it feels like being sliced by thousands of ice knives. But a chill that doesn’t involve moisture, just feels like a chill always felt, just tons worse because it also feels like the muscle aches of flu. Doctors ask and then when I describe it, it doesn’t lead to any treatment and they act as if I’m crazy. Sherri Louis added that Not being able to think or come up with words I’m trying to think of.

To Read “12 Ways to Describe Fibro to those who hasn’t felt it” Click Here

17. Awkward Motions:

Ashley Bingham says: I find it to be embarrassing when my nerves get that burn and tingle started because it makes my body look like a fish flopping. We all get a good laugh about it though. Gave myself a black eye. An swinging arms or legs without control an hitting someone. Was funny but not nice lol.

When my back or leg gives out & I trip or almost fall. I say almost because I catch myself with whatever is near including a wall. Walking one minute then out of nowhere can’t. Especially when i am with other people. They look at me like you were walking fine a second ago what happened??

When i try to get up from a seated position but my low back, hips and sacrum are not cooperating. Its like i’m locked in place have no way of getting up other than by using my arms to push myself up out of seated position. I do this while trying to not draw attention to myself. Again the worst when others are around and i just want to at least seem normal. Trying to have a conversation but can’t remember simple easy words. I’m well educated but sound like I’m not when I can’t think of a word or how to explain what word I can’t think of.-Bridgett Bible.

So whats your embarrassing symptoms , let us know in comments below.

Lets wear this purple to spread awareness about our illness