If you live with fibromyalgia, you can describe the symptoms you experience to your doctor and tell your friends and family how the illness affects your ability to participate in everyday activities. But unless they have the condition themselves, it’s just about impossible for them to truly understand what fibro is like.
It usually takes a fellow fibro warrior to be able to fully empathize with all the symptoms, side effects and lifestyle changes. Connecting with other people who “get it” won’t make your fibro go away, but it can be comforting and encouraging to know you’re not alone in your fight.
We asked our Mighty community to share some of the things that only those with fibromyalgia tend to understand. If any of the following experiences ring true for you, we hope it can be a reminder that there are plenty of people out there who really do understand.
Here’s what our community shared with us:
- “A day doesn’t go by without some weird symptom. It’s not just pain. And no, it’s not just a sore back. Or sore knee. It’s deep aching pain all over.” – Melanie S.
- “Sweating and freezing at the same time.” – Heather E.
- “The normalcy of waking up after what for most would be a full night of restorative sleep feeling like you barely slept at all and retaining that feeling all day, every day.” – Burgundy L.H.
- “The fear. Fear of going on a trip because traveling can cause you to flare. Fear of meeting new people because they might not understand fibromyalgia and reject you. Fear of having to much fun with your kids because you may pay for it the next day. Fear of what the future holds, will my symptoms get worse?” – Amber G.S.
- “Am I getting sick or is it just the fibro?” – Heather C.
- “Having a nose like a bloodhound, heaving or getting a migraine at aftershave, perfume, sweat, cooking. Hair wraps and dry shampoo for dirty hair weeks.” – Lola C.
- “Your pain, fatigue and other symptoms can change from minute to minute… Just because I’m OK this morning doesn’t mean I’ll be OK by noon.” – Hetha S.
- “The true gratification of taking your bra off at the end of a long day.” – Sydney L.V.
- “I miss the person I was before the pain. I miss the energy I had before the pain. I miss the respect and support from some of my old friends and also some of my family. I miss having fun. I miss who I used to be but most of all the pain is almost unbearable.” – Kelli E.
- “Time moves a little differently for us.” – Angela M.
- “Canceling plans due to pain level, migraine, exhaustion, other symptoms. Unfortunately it can be hard for friends and even family to understand when you have to cancel; it sometimes gets taken personally.” – Mackenzie P.
- “Getting sick, even a minor illness, can cause your symptoms to flare up big time, which makes your recovery so much longer than it should be.” – Taisha A.
- “When someone tells you to ‘feel better’ and you want to scream, ‘It’s a chronic illness… I won’t ever feel better!’ But instead you say, ‘Thanks.’” – Amanda W.
- “Just how debilitating a flare can be. It’s not just that you ache, it’s deep and emotionally draining. Only other fibro patients seem to really understand what it’s like.” – Lisa T.
- “Turning the lights off and hating loud noises.” – Kat M.
- “Just how simple weather changes cause a massive flare-up. How the sky simply getting ready to rain makes your muscles feel like they are tearing and your bones feel like they’re about to eject from your body… Everyone else says we are exaggerating but we know how bad it is and the second it starts we need to take meds right away so that once it does start raining its not quite as bad.” – Sam H.L.
- “Me: ‘My hair hurts.’ Them: ‘Hair can’t hurt, it doesn’t have nerves.’ Me: ‘…My hair hurts.’” – Ashleigh M.
- “How utterly exhausting everything becomes. What used to be simple tasks take three times longer and can drain every last bit of energy. Even taking a shower in the morning can leave you bedridden for the day if you’re not careful. Listening to your body becomes imperative.” – Ashley A.
- “People forget that pain is often intangible and invisible, what could be twisting my sinews literally or shattering my body and mind to pieces won’t be even visible outside my skin.” – Pooja P.
- “We have so many different types of pain. And, you can have several types happening at one time.” – Tamara M.
- “When you’re done, you’re done. Most of us have learned to gauge our energy levels and limits pretty well, but I find that people unfamiliar with fibro assume my verbal ‘warnings’ of ‘I can’t do anymore today,’ or ‘I’m getting pretty spent’ are either an overstatement or melodramatic. Other people with fibro, I think, understand that really means I need to be done ASAP. As in, ‘I will collapse and/or be violently ill in the next five to 10 minutes if I don’t sit down and rest.’” – Mikhaile S.
- “How much energy we spend just being sick all. the. time. Working twice as hard to get half as far.” – Liz H.M.
- “How all I want to do is sleep because that’s the only time that I don’t hurt.” – Tracie S.K.
- “Yes, taking a shower hurts.” – Alison C.
- “Sometimes you just can’t stand the weight and constraint of wearing clothes – we all have those extra big, light material t-shirts for those days!” – Terri D.
- “Not sleeping, the chronic fatigue, the constant pain. Pretty much all of it. And it’s always there, you don’t get a break.” – Bryan M.
- “Just before a vacation or fun night out… Am I having a flare-up or is my anxiety about having a flare-up causing a flare-up?” – Heather C.
- “A gentle touch can feel like a punch. So, when I punch you for tickling me it’s because it feels like you’re literally driving your fingers through me.” – Amanda K.
- “How hard we push every day to do things we want to but shouldn’t do.” – Lex F.
- “Even if they listen, they will never understand. I don’t care who you are – a doctor, a parent or a friend. If you don’t have it you won’t get what my life is about or how I feel.” – Cynthia K.