20 'Weird' Requests That Help People Manage Their Fibromyalgia
Living with a chronic illness like fibromyalgia often means managing a wide range of symptoms and side effects. Sometimes, the coping techniques you use are fairly easy to maintain control over – like whether or not you take your medication each day. But other times, in order to cope with your symptoms, you may need to request certain accommodations from others. Maybe your friend has way too many lights on in their home, and you need to ask to turn several off to avoid getting a migraine. Or perhaps the office thermostat is set at an uncomfortable temperature, and you have to ask your coworkers if it’s OK to adjust it.
Some of the requests fibro warriors make might sound a bit “strange” or unusual, but they’re not trying to be “high maintenance” – they’re simply doing the best they can to care for their health and avoid a flare-up of symptoms.
Mighty contributor Jeannie Di Bon recently shared an insightful article describing 10 “strange requests” that would help people with Ehlers-Danlos syndrome manage their symptoms. Her piece sheds light on some of the unique struggles those with EDS face, and we wanted to do the same for our fibromyalgia community, so we asked Mighties with fibro to share a “weird” request they’ve made for the sake of their health.
If you have a friend or loved one in your life with fibromyalgia and they ask for something that perhaps sounds a bit odd, practice compassion instead of judgment. Helping to accommodate their needs would be appreciated more than you know. And if the following requests sound familiar to you, know you are not alone, and there is no shame in asking for something that would benefit your health!
Here’s what our community shared with us:
- “Do not tickle me. Tickling me is excruciating, never fun and it’s literally made me avoid certain friends. Not because I was trying to be petty, but if I specifically (and often emphatically) had asked someone not do it, and I’ve said ‘it hurts, badly,’ and they do it anyway… I have had to do it unless I want a flare-up because I’d hung out with them. My husband is credited with never once in 20 years trying to tickle me, which seems like a small request, but something I greatly greatly appreciate.” – Nina H.
- “[I ask] not to startle me out of sleep because it’s a guaranteed flare.” – Sarah M.
- “Don’t judge me if I don’t want to sleep anywhere else but home… I need my 10 pillows to buffer every pain point at night… and no, I’m not being over-dramatic. If you want me to stay out prepare to take me to the ER in the morning because of the pain and all my joints locking.” – Jenna-Lee E.
- “Please put the windows up in the car, the light breeze you are enjoying is excruciating on my skin and the noise is making it impossible to think.” – Jayne D.
- “[I ask] people to please turn down the TV or radio because sound is too much to handle. Also, asking that the curtains stay closed so I don’t get too much light and end up with sensory overload. Everyone except for my husband looks at me like I’m ‘insane’… Yet, these issues can become physically painful very quickly.” – Diana E.P.
- “I always ask for a booth at restaurants because they hurt less to sit at for longer periods of time. At home we eat on the couch because regular chairs hurt or are uncomfortable to sit at.” – Krystina K.F.
- “I have asked people to let me finish my sentence. With my fibro I get migraines. My migraines causes a severe stutter almost every day. People think they are helping me by finishing my words or sentences when really it can get frustrating because I feel like I’m incapable of speaking.” – Mackenzie P.
- “When I’m in the kitchen my roommate can’t be. It’s too small to avoid bumps.” – Brody L.
- “[I ask] to be moved to the ‘freezing’ patient room at the doctor’s office, which is too cold for everyone else but is perfect for me because I always feel like I’m burning up. Being in a 70-degree room is too hot for me – I sweat, and get more dizzy and nauseous than I already am on a daily basis.” – Gwendolyn C.R.L.
- “I have to ask that we keep the heat down in the winter and the air at a low temperature in the summer because it is easier on me to regulate my body temperature this way. I have to keep popsicles or ice cream on hand so I can have one after a hot shower. Otherwise I will not be able to cool down.” – Vinnie B.
- “I always insist on sitting in the middle of the theater, in the middle of the row (middle middle) so I don’t have to sit with my neck at any odd angles. Partially due to mild cranial-cervical instability due to being born with EDS and partially due to FMS chronic pain. It got really bad after I was rear ended in junior high.” – Eileen H.
- “[I ask] for a blanket to wrap myself up in when it’s 32°C [89.6°F]. I can’t regulate my body temperature – I’m either freezing or boiling, and the outside weather never really dictates which one.” – Alexandria P.
- “[I ask] for a handshake instead of a hug from friends or loved ones. Or instead we do ‘gentle hugs’ which tend to come off a smidge awkward because people then are concerned about me/didn’t actually realize I was in pain.” – Geena D.
- “I only will get a vehicle if it has heated seats now because they make driving tolerable. Some people think it’s weird that I won’t buy a car if it doesn’t have heated seats.” – Krystina K.F.
- “[I ask] people to chill out because their hostility is stressing me, leading to a flare.” – Sarah N.
- “[I ask] coworkers to turn off the lights to avoid migraines during meetings. And being bundled up all year at my desk and asking people to [not] ask me questions about it.” – Courtney F.
- “[Please don’t] use the vacuum around me or at the very least allow me to insert ear plugs before you try. The low tone overwhelms me and makes me cry (like nails on a chalkboard).” – Toni C.B.
- “[Don’t] wear/use a certain scent that will trigger my migraines.” – Terri D.
- “‘Can you pull my legs or arms please?’ I find if someone pulls my limbs it eases the pain mostly or causes a crack that eases the pain for a bit. Usually [I ask] my partner but I’m not shy on asking friends or work colleagues.” – Kirsty A.
- “Always text me before you call me. I’ll tell you if I have the strength for a convo.” – Toni C.B.
MORE ABOUT FIBROMYALGIA:
Fibromyalgia, a chronic illness with three main symptoms — widespread pain, chronic fatigue and cognitive trouble. Fibromyalgia is a complicated illness that’s not well understood. In the past, it was mischaracterized as a mental health disorder. Even today, some doctors wave off fibro symptoms as being “all in your head.” This isn’t the case. Read The Mighty’s comprehensive guide to fibromyalgia here. Click here to join our fibro community and connect with people who get it.
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