By: Cassidy Colbert
When people hear the term fibromyalgia, they might think it is “just” chronic pain and fatigue – however, those living with fibro know it can cause so many more symptoms than that. Sometimes fibro can even cause symptoms that others may see as “taboo” or off-limits.
Talking about these “embarrassing” symptoms with a friend, family member or even your doctor may feel uncomfortable and awkward. But you should never feel like you cannot discuss your health openly. In doing so, you may be spreading awareness on fibromyalgia, while also helping others to gain a better understanding of what living with fibro is really like.
That is why we asked our Mighty community to share the “taboo” symptoms of fibromyalgia they experience, and what they wish others understood about them. Let us know if there are any other “taboo” symptoms we missed in the comments below.
1. Sensory Overload
“Sensory overload. It’s hard to handle too much noise, movements, lights, smells, etc. It makes socialization extremely hard because if there’s more than one person there, there’s already extra movement and sound going on. Add a public place to it, and it makes the system go haywire with brain fog, indecisiveness, anxiety and pain. A lot of times it can come off as rude or antisocial, but I don’t think you could ever understand how hard socialization with sensory overload is until you’ve experienced it.” – Alexandria P.
“Sensory overload makes it hard to concentrate on a conversation. If I’m feeling overloaded, I try so hard to focus, but it’s like looking at someone in a conversation and everything is blurring together and sound gets muffled, the air feels thick like it’s hard to breathe. I just hope I can reply good enough without the person knowing I’m struggling to understand what they are saying.” – Kristine C.
2. Decreased Sex Drive
“The lack of a sex drive. Or the fact that sometimes you are in so much pain, that even if you wanted to have sex, it would hurt and you decide you need to save your energy for something else. I wish people would understand that it’s hard to be young and not as sexually active as other people your age. And that sometimes sex can literally make you hurt for days after with fibro.” – Courtney D.
“Your sex life taking a nose dive. I’ve been sick since I was 20 and most of those years, I hardly had a sex life because of my libido issues. I’m ‘supposed’ to be having all the crazy, wild sex in the world in my 20s but here I am at six months till 30 and I haven’t had anything close to that. I didn’t even have wedding sex because as soon as we got home, I passed out from all the stress and excitement. We got divorced just over a year later with my fibro and lack of sex being the main issues.” – Aurora N.
3. Temperature Regulation Issues
“The constant sweating. Due to my temperature sensitivity and my meds I have hyperhidrosis. I sweat so much, either when it’s hot or when I get nervous, rushed or flustered. It makes me feel very self-conscious, especially at the gym or when I go out at night.” – Amy C.
“Inability to regulate temperature. Some days it’s not even hot and I’m sweaty. It’s so embarrassing and I feel I need to explain myself if people look at me because I’m so sweaty.” – Megan L.
“Temperature sensitivity! I have a heat stroke at least once a year, and I am at an increased risk for hypothermia because I can’t regulate my own body temperature! I wish I could go to the beach or out to snowboard/sled but because I can’t regulate my own temperature I have to stay inside and miss out on a lot of the fun. I wish more people would understand that it’s not me being a party pooper, it’s me trying to save myself from a trip to the hospital.” – Gabi H.
“The sudden fatigue… I’m not lazy! I’ve learned that I have to pace myself to ensure that I have the right energy to get through the day so if I say no to something or ask you to help with something that seems like an easy task, I’m not being lazy, I have hit an energy wall.” – Cate M.
“For me, it’s the awful fatigue! I’ve been accused of ‘being lazy’ – which is so terrible… as if I had the choice I’d choose to just miss events.” – Jennifer H.
“Constant exhaustion and the fact that no one understands or wants to comprehend someone having pain 24/7.” – Tiffany M.
5. Personality Changes
“For me, it’s the personality changes. I’m always irritable and snappy. I don’t enjoy being around people (partly due to sensory overload) and have closed myself off so as not to hurt anyone’s feelings with my callousness. The constant pain makes me so angry with everything that it’s hard to function.” – Monica M.
6. Brain Fog
“The brain fog. It’s really hard to explain in the first place and it often comes across as rude or ignorant or as if you aren’t trying anymore.” – Lauren H.
“I get forgetful. Especially how to get somewhere I’ve only been once or twice. And brain fog. It’s like I forget how to think, get dingy and fuzzy headed.” – Colleen S.
“Brain fog at work is the worst. Knowing you know your stuff, but can’t remember certain things you normally could. It makes you feel like people think you aren’t intelligent or that you don’t actually know what you are talking about.” – Christy F.
7. Emotional Side Effects
“I fear that my children, who have seen me painful, tired and not able to sleep, are modeling that behavior because it’s what they’ve seen for most of their lives! I don’t want my kids to think this is ‘normal’ life because it’s not. Kids live what they learn!” – Jennifer P.
“The emotional side. Worry is a big one. Being in pain also leaves me feeling emotionally vulnerable and scared. I worry a lot about my future. If I’ll accomplish my goals, if I’ll be a burden on my future loved ones, if I’ll have a family. I can’t make these thoughts go away. I can bury them, but they’ll always be there. The vulnerability and fear around talking about it is hard. I’m scared of my emotions not being received well so I try to deal with them all myself. At least then I know I won’t be invalidated. That’s not a healthy way of thinking though and I have been opening up to a therapist and a few safe friends as of late. I just wish people knew that I can’t help the way I feel about being sick and it’s a really raw and vulnerable subject for me to talk about. I need a lot of empathy and compassion.” – Jillian S.
“Feeling like half the person I used to be. Lost dreams, seemingly unattainable ambitions. And worst of all, feeling that I will be alone for the rest of my life because who would want to begin a relationship with someone as limited as this. I feel like a ghost.” – Angela K.
“The embarrassment and frustration that comes with having fibro. When I get foggy or am showing any type of fibro symptoms, I become extremely self-conscious about what I can and can’t do or say…” – Brianna S.
8. Difficulty Regulating Weight
“The weight fluctuation!! Medicines cause it, less physical activity from pain and exhaustion, eating less than great food because it’s quicker to make, eating less food because you’re just too tired to eat, the depression from being sick! It all ends up causing weight fluxes!!!!” – Heather S.
9. Gastrointestinal Issues
“IBS. We’re so cringe-y about bowel-related conversations. Having to run to the loo halfway through a conversation with someone because you feel your bowels turn over and know you have minutes if that… Always rather humiliating at first. You get used to it, and you carry a radar key, but still awkward at times. We need to stop shying away from it. Bowel issues are a normal thing for us, and we need to be more comfortable as a society.” – Erika D.
“IBS but actually having so many problems. You reel them all off and think how can someone have so many things wrong with them.” – Renez S.
10. Anxiety and Depression
“Depression. Because the moment you mention depression, people in the medical field and often family/friends either freeze up… or want to blame your rough days on depression. Which is not to say that depression on its own is not debilitating. But, many people cannot keep causation vs. correlation separate when it comes to depression. It is an uphill battle that I’ve fought for years. And it really sucks, because of course depression is a factor. How could it not be? But it’s not the cause of my lupus or my fibromyalgia. But because of the tendency to blame all of my symptoms on depression, I very rarely want to talk about it.” – Nina H.
“The anxiety and depression it causes.” – Jessica B.
“Depression. It doesn’t go away because the cause of it doesn’t go away. You can keep it under control with medication but people rarely understand ‘invisible illnesses.’ They see you laughing and smiling so they assume you must be healthy. If only they knew many of us have tiny little pills to put that smile on our face every day.” – Julissa B.
11. Bladder Issues
“Bladder problems. Feel very self-conscious about it.” – Libby B.
“The instant I feel the urge to pee, it is too late, I have already leaked a little. If I can’t get to a bathroom right away, I leak even more, hate having to wear pads or adult underwear, so embarrassing! I’m always worried about smelling like urine too.” – Jennifer H.
“Bladder problems! Does anyone else have these? I have [an] overactive bladder so have to time when I go to the loo (can’t be less than two hours or my bladder muscles spasm). It can be aggravated by sexual activity which can sometimes put me off. At 29 I feel I’m pretty young to be having these kinds of issues.” – Laura B.
When you have fibromyalgia, talking about the “taboo” symptoms that come with it can be extremely difficult. But just remember, you are not alone, and by speaking up about your symptoms you could be educating others on all the effects fibromyalgia can have.