Navigating everyday life with fibromyalgia can be a challenge – so when your fibro symptoms flare up, causing increased pain, fatigue, brain fog and a plethora of other symptoms, simply getting through the day can sometimes feel near-impossible.
Currently there is no cure for fibromyalgia, but many of those with the condition have developed certain habits, behaviors or techniques they turn to during flare-ups to help them cope with their symptoms. However, the reason behind these “habits” may not always be obvious to friends, family or even doctors, which can lead to misunderstandings – and it’s not always easy to communicate in the midst of a flare.
That’s why we asked our Mighty community to share something that people don’t realize they’re doing because their fibromyalgia is flaring. If you have fibro and recognize some of your own behaviors below, know you’re not alone, and it’s OK to do whatever you need to do for your health during a flare-up.
Here’s what our community shared with us:
“Fidgeting a lot. Or when I’m trying to sit or lay down and I’m constantly moving because I can’t find a comfortable position that doesn’t cause pain.” – Maegan D.
“Shaking my legs in bed so they hurt less so I can fall asleep. And rolling over a lot. Wedging pillows everywhere.” – Jyl E.
“I go from pacing, to siting, to standing, and shifting from one leg to the other. My joints get stuck especially my right elbow so I raise my whole arm straight up like I’m back in school wanting to answer a question. Funny thing is I work at a school. But I’m really just trying to pop my elbow back.” – Elizabeth T.
2. Watching Familiar TV Shows
“Binge ‘Grey’s Anatomy’… Seriously. I know it by heart so I don’t have to pay attention to it. I can nap and rest all day and when I wake up I still know what is going on with the show even though I haven’t actually been watching it. When I’m not in a flare-up I love finding new shows and movies but when a flare-up is coming on I always fall back on my old favorite.” – Shayla F.W.
3. Gritting Your Teeth
“Gritting my teeth.” – Carolyn M.
“I clench so hard… which in turn makes my TMJ disorder worse.” – Amanda A.
“I clench my teeth when my pain is bad. I often don’t even realize I’m doing it until my jaw starts to hurt, too.” – Bethan B.W.
4. Staying Quiet
“I become quieter, less sociable and remove myself as much as possible from over stimulus, especially when I’m trying to be ‘normal.’” – Lola L.
“I try to slow down my breathing and stay in silence trying to stop thinking about the pain.” – Sofi O.R.
5. Snapping at Others
“Being snappy and, as my friends call it, lacking social skills… responding only in short sentences, blunt, to the point and absolutely no small talk. If you want something, ask – I will either say yes or no, and then leave me alone. It’s just because I’m literally functioning on a basic level. I don’t have energy to expend on others because I barely have enough to keep myself functioning.” – Jenna-Lee E.
“Getting angry as hell and cussing a lot.” – Christy F.
“My tolerance threshold goes way down when I’m super exhausted. This leads to me snapping at people – family members, friends and coworkers. Even when they know why, it’s sometimes hard for them to understand. Especially my 9-year-old! I have gotten in the habit of telling him I’m sorry, that was about me, not you. It’s hard to be a good mom when you’re in so much pain and exhausted after doing very little.” – Fibromomblog
6. Massaging Painful Parts of Your Body
“Rub my jaw constantly. It helps with the headache.” – Shannon M.
“Always fidgeting because I cannot get comfortable. I’m also constantly rubbing or massaging different areas of my body where the pain is the worst. Sometimes I do this without even realizing it.” – Molly L.
“Squeeze my joints… sometimes my hands hurt so bad that I sit on them or I squeeze them together, I don’t know why but it helps to ease the pain.” – Lau R.
7. Leaning Against Things
“Shift my weight constantly from one leg to another. Also, I try to lean against things like counters and doorways and walls in order to get some weight off my legs.” – Krystina K.F.
“Standing with my hands on my hips/lower back and swaying side to side. Leaning against things for some extra support.” – Seána N.R.
8. Cracking Your Joints
“Cracking everything. Back, neck, elbows, wrist, knuckles, ankles, yada yada. It’s become a nervous habit now actually.” – Sara L.
9. Calming Yourself With Mindless Distractions
“At work I put my noise-cancelling headphones in with Fleetwood Mac’s greatest hits on medium volume. I choose an activity that doesn’t require ‘thinking’ and just chill out, try to relax and breathe through the pain.” – Nicole F.
10. Avoiding People
“Hide out at home. I’m not able to carry on a conversation and I have very little patience so it’s best to avoid people.” – Jen F.W.
“I hide at home.” – Dilene M.W.
“I isolate myself. I don’t want my family to see how much pain I’m in so I hide.” – Shayla F.W.
11. Staying in Bed
“I lie in bed all day praying for pain to stop. When I have to take my dog out I walk really slow.” – Shanleigh R.
“Not leaving my room except to go to the bathroom or get a snack if I really need one. When I’m in a flare I hurt so badly even switching positions in bed can make me feel like I could pass out from pain or exhaustion.” – Courtney H.
“Laying in bed with my heated throw blanket on high, my weighted blanket on top of that and ice packs on my spine. It overwhelms the nervous system and slowing calms down the pain enough so I can sleep.” – Bri B.
12. Sleeping a Lot
“It may come off as lazy to others, but I sleep a lot to numb the pain for awhile. Plus, being in pain majority of the time is exhausting.” – Tori B.
“I need to get a lot of sleep!” – Chloe F.M.
13. “Zoning Out” During Conversations
“I just zone out and lose all concentration due to pain, fatigue and sensory overload. People will be talking to me and I see their mouths moving, I hear nothing. They think I’m just being rude but actually it’s because my pain, fatigue and sensory overload have gotten so bad that my brain has shut down and can’t focus on anything other than the pain.” – Bethan B.W.