Fibromyalgia is a condition often characterized by widespread musculoskeletal pain, chronic fatigue, sleep disturbances and brain fog – but in reality there is a wide range of symptoms and side effects fibro warriors may experience, including sensory sensitivity.
A number of studies have found that fibromyalgia pain may be attributed to a “hypersensitive” nervous system that overreacts to stimuli. It makes sense then that many people with fibro experience sensory issues, causing certain types of light, sound, smell and touch to aggravate symptoms – including pain. One study even found that the “sensory amplification” those with fibromyalgia experience is directly correlated to levels of pain and fatigue.
We wanted to better understand the sensory sensitivities people with fibro experience, so we asked our Mighty fibromyalgia community to share how sensory issues affect them. If any of the following experiences sound familiar, know you’re not alone. Let us know in the comments below if fibro-related sensory issues affect you, too.
Here’s what our community shared with us:
- “I have SPD (sensory processing disorder) and I’ve found that if my sensory issues are triggered, my pain is triggered as well. It’s like having the wind knocked out of me. I often wear a mask in large social settings to try to block out airborne particles/smells and ear plugs if I know I’ll be somewhere loud. I often compare it to the scene in ‘Bruce Almighty’ when he’s at the restaurant and suddenly hears everyone praying at once in his head. That’s what crowded places feel like for me. I feel very drained from any intake of sound, lights, noise and smells. It makes me fatigued.” – Katelyn I.
- “Flashing lights make me feel faint and sometimes zone out. Also does that if I’m in lights that are too bright for more than a minute or two.” – Leon M.
- “Sensory overload can trigger a flare-up, it can be debilitating and exhausting. Sometimes I have to tune out the world for a few hours so I can get back to my life.” – Crystal B.
- “Strobe lights make me feel lightheaded and off balance. I have a very sensitive sense of smell. Even the slightest change of scent can make me sick to my stomach or hard to breathe. It gets worse during a flare. My body can’t handle the cold. (Living in Michigan doesn’t help either.) If my ears get too cold, my speech will begin to slur and occasionally I’ll faint. No one can tell me why it happens. I can’t go out in the snow very much anymore. Makes it difficult to make snowmen and snow angels with my children.” – Diana E.P.
- “I don’t tolerate loudness, bright lights, scents or temperature fluctuations at all. I also experience burning skin sensations.” – Michaelle B.
- “Bright lights give me migraine, the smell of coffee gives me migraine, just about any loud noise is overwhelming and gives me a panic attack, and any combination of lots of sensory input blows my mind and I totally freak. I’m also uber sensitive to temperature which is fun when sharing an office with lots of cold people.” – Vikki J.
- “I don’t think I can go to a store until Christmas is over… the bright red lights, overhead fluorescents, hoards of people who don’t pay attention, sounds and smells are too much. I shut down. I literally can’t see, balance or think. I’m trying to ground myself and not have a panic attack, I’m trying to shrink deep inside myself and hope that nobody bumps into me – it’s excruciating. My husband has to guide me and I have to hold onto him to not fall. I often think how I really should’ve brought my walker… I need to make it a habit to always bring it to the store. (I have fibromyalgia and multiple sclerosis. They work together on this.)” – Tabitha S.
- “I wear sunglasses even on cloudy days… and ear plugs when I’m going anywhere public… sometimes even then I still get overwhelmed!” – Hannah W.
- “[I experience] lot of negative [effects] like the cold amplifying my pain. That being said I have an awesome taste ability so sometimes food is just amazingly tasty. Also super touch. I get all touchy – like if a friend has super lovely soft hair I’m like, ‘give me a feel,’ or fluffy animals and funky textures. I’ve mauled peoples coats or hats many times. This also works in reverse though and I touch a fabric or food and be like… eww.” – Kirsty A.
- “Can’t handle loud noises or bright lights. The noise gets me the worst.” – Megan M.
- “When there is too much noise coming from different sources (e.g. washing machine is on, clothes dryer is going, TV is on, kids are playing loudly, music on in the next room) I feel like I can’t process any of it and my head is about to explode and my pain increases and everything is chaos. I keep sunglasses with me to wear inside, outside no matter where I go because bright lights trigger me and increase my pain and make me feel like it’s all too much. Perfumes, deodorant, cleaning products, air fresheners and a lot of other synthetic or chemical fragrances can trigger me. Also touch – people touching me too much and in certain places can send me into intense pain. Something as simple and loving as a hug can be difficult especially when I have to hug many people or have many touch me. I avoid crowds due to this also.” – Samantha A.
- “When I’m in a flare state I’m hyper-aware of all sounds. I crave silence but I can hear every tap like a boom.” – Amy M.B.
- “Loud noises affect me the most and smells can sometimes.” – Ashley C.
- “[I’m] sensitive to lights, excessive noise and smells – they are all intensified and can cause a flare. I have a weird thing with my vision sometimes as well. Some things I can see in 3D — what I mean is [it’s] as if I can see into the object, like layers, and it creeps me out. Most definitely it heightens all senses and not in a good way.” – Toni D.