Young girl and pain in neck gray background and tex 22 things people dont realize youre doing because you have fibromyalgia

When you’re fighting an invisible illness like fibromyalgia, the battles aren’t always obvious to outsiders. When you turn down an invitation or opt to take the elevator instead of the stairs, it’s all too easy for people to assume the reasons why — without realizing that in fact, you’re just doing your best to manage your symptoms.

We partnered with the National Fibromyalgia Association to ask our Facebook communities what everyday things they do that people might not realize are rooted in their fibromyalgia. Their answers reveal the secret struggles fibro warriors deal with every day — and that if friends and family are paying attention, they’ll see how hard their loved ones fight to deal with the painful effects of fibromyalgia.

Here’s what they told us:

1. “Not showering every day or keeping up with laundry. People see me as lazy but in reality, I’m prioritizing what I can do each day. Otherwise I’d be out for a month. It’s hard for people to understand how much energy and effort it takes to do the most simple tasks.”

2. “I keep a lot of my curtains closed and the brightness on devices on lowest; when I’m having a flare light hurts me so much. My smell and hearing are too sensitive. Repetitive noises are agony to me.”

3. “Napping. I hate sleeping during the day. I feel miserable when I nap, but if I don’t lie down, I will fall down. Some of my friends love to nap and envy me when I tell them I spent the afternoon in bed. To me, though, napping is just one more way my life is not my own now.”

4.I clench my jaw really tightly when in pain (probably just looks like I’m pulling weird faces!). Also people think I’m strange for not drinking alcohol, but it reacts with my meds and a hangover feels a million times worse!”

5. “I rub my hands a lot and sometimes my feet. Most people don’t think this is anything more than self-comfort. The reality is, the weakness and pain in my hands, arms and legs is something I deal with every day.”

6. “This weekend I was at a wedding. Most people at my table were dancing and were trying to tell me to join them. They don’t know I was bravely smiling through the pain and that it was a two-hour battle just to get dressed up and show up. There was no strength left for dancing.”

7. “Google-Earth-ing everywhere I have to go (or am considering going) and have never been before to assess if the building would have stairs (inside and out) and a parking spot nearby.”

8. “I wear a lot of fuzzy socks because I have cold feet issues. Having fibromyalgia means when I get cold my pain gets elevated even worse. Ugg boots are also helpful because they are soft and warm.”

9. “Avoiding family gatherings as much as possible. I come from a very big and loud family who likes to hug. I’m surrounded by all of them and the kids are running a round and everyone is talking laughing and having a good time. No one realizes how huge that sensory overload is for me.”

10. “A prime example is ‘test-driving’ chairs to find the most comfortable one. At work, there are several office chairs in the main work area that are used by various people on all shifts, so they get moved around and swapped for each other pretty often. When I’m working in that area, I sit in each chair for a few seconds to see which one is going to cause me the least amount of pain throughout the day (the chairs are identical, but some are older/used more than others). People who don’t know I have fibro may find it odd or humorous, but I think even people who do know seem to find it ‘amusing’ at times.”

11. “I’m soon to be 27 and have the memory of a goldfish. I mix up words and stutter so bad. People don’t realize I have fibromyalgia and this is why I do this.”

12. “Taking a deep breath as I reach the entrance door at work, putting a massive smile on my face. Chest out, shoulders back… keeping on my ‘I’m OK’ face until I crumble back into my car at the end of the shift.”

13. “I really don’t talk much because I have fibro fog and find it hard to carry on a conversation. So this sometimes makes me appear disinterested in others, but that isn’t the case at all. I find it hard to find the words to say.”

14. “When I have to stand for more than a couple of minutes I rock back and forth to distract myself from the pain. Most think it’s just a nervous habit, but in essence it’s my pain control.”

15.Giving up my social life. I go to work, and I come home. That’s all I can manage to do. I have to choose between going to church, family activities, and meeting with friends over rest. And lately, rest wins.”

16. “Sometimes I’m having a really bad flare and can’t get out. Rather than admitting my weakness, I say the kids are sick or something, so no harm, no foul. It makes me uncomfortable admitting it, and it makes them feel even more uncomfortable/angry/disappointed, etc.”

17. “I walk out of work when my shift ends and drive right home. I don’t say goodbye to anyone because if we end up chatting it’ll be even longer until I get to lounge at home and rest.”

18. “Turning down TVs and radios when people come in the room. The noise sensitivity makes sounds get louder the more there are different sounds. Each added person, instead of making it harder to hear something, amplifies the sounds.”

19. “When you take an extra day off work from a holiday weekend. It’s not to just play around and be lazy. It takes me days to recover from travel, from cooking the Thanksgiving turkey, from Christmas shopping, even from just sitting in an uncomfortable chair eating a holiday meal with family and friends.”

20. “In college, people don’t realize I always tell them, ‘I have to go to the bathroom, be right up with you guys’ because I don’t want anyone looking at me me while I slowly climb my painful way upstairs. So I always make up an excuse to be the last one to go up, and alone.”

21. “I text instead of calling because I’m not sure how I’ll sound over the phone, and I can make the text sound positive without acting.”

22. “I take a few minutes every so often when I’m out, like when I go to the bathroom or pop to the kitchen, and just sit and gather myself. Allow myself to feel the exhaustion and pain then breathe and go back in.”

What are some things you do that people don’t realize you’re doing because you have fibromyalgia? Share in the comments.




22 Things People Don't Realize You're Doing Because You Have Fibromyalgia

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Nature and my feet, AKA Beauty and the Beasts

After well over two years of mounting physical problems, I finally bottomed out but emerged with a diagnosis: fibromyalgia. It’s known for including chronic pain, but it’s much more: essentially, your body is stuck in a fight-or-flight response. Yes, this means nerves are hyper-reactive. But it also means there are changes to your chemical and hormonal levels, how certain parts of your brain functions, and this can have an impact on pain, energy, digestion, immune system, and sleep, which in turn can create all kinds of effects. So… crap.

I’ve spent the last two to three years as a bit of a physical train wreck and spent the last few weeks as an emotional one. I have lived physically and loved it. But, in some way, my life will need to change. Maybe much of what I did can be done again, maybe there’s some new passion to replace it with, but after some time to rage and grieve, a few nuggets of clarity emerge.

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The outdoors have given me some great family moments.

Hiking, mountain biking, skiing, and all my time outdoors is a way of being connected with Sara, my girls, the world around me, and with myself. At its core, those are my goals, and these activities were how I reached those goals. I’ll never stop being someone who loves the outdoors, who craves adventure (hey, I guess I’ve got an excuse for being an adrenaline junkie), who strives to connect deeply with loved ones. But now my challenge becomes figuring out how that will look.

family skiing
Whatever the specifics may be, the goal remains to live vibrantly.

As I begin getting educated on this stuff, I feel a bit of a contradiction: I’m supposed to stop living how I’ve lived, but I’m supposed to work to get back as much of what I lost as I can. I know an expert would say it’s more nuanced than that, but it’s how I understand the therapeutic goals as I flail early on in this process.

When I started blogging about my hikes, my goal was not to delve into the topography or detailed explanation of the trail. For me, it was to chronicle how my life and the lives of those around me were unfolding. My stated goal was to hike the 67 New England high summits. But my real goal was to use that writing as a way to focus myself on what was unfolding for and around me over a longer period of time. I was interested to look back 67 months later to see what storyline would emerge. I got halfway through, on track, before coming to a crashing halt. This diagnosis may suck, but if it’s my reality, then the only remaining question is where I go from here.

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What the… ?!?! I thought I knew how to navigate life. But now I’m in uncharted territory…

So, now I see me repurposing this writing: to explore where this new life take me; to find what new adventures await; to see how I continue to bond. I feared I’d need to reinvent myself. But with more reflection, I think I just need to figure out how I can continue to work at being my best self. I’ll undoubtedly have some trial and error, maybe with some epic fails. I’ll presumably continue to find nature to be soul-nurturing. For all the times I push my daughters out of their comfort zones, it’ll be time for me to model the way, which may be good for some memories to wince or laugh at. And I’ll likely look back somewhere down the road and find I’ve taken on some surprising new ways of living that I’d never have expected.

If you indulge me the hiking analogy, I’m standing at the trail head. I can’t see far down the trail and know this will be a challenge. But as with past hikes, I start by putting one foot in front of another (albeit painfully). Eventually, it’s euphoric to stand on the summit and feel triumphant, proud of the effort, proud of the accomplishment, proud of who I am, and of who I’m with.

man hiking beautiful trail
… So it’s time to start a new journey and see where it leads.

One step at a time.

Follow this journey on Rock Hopper Hikes.

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I knew something was terribly wrong when I was in the emergency room twice this past summer for excruciating musculoskeletal and joint pain. Since August of this year, I have been diagnosed with a multitude of chronic illnesses, including fibromyalgia, Ehlers-Danlos syndrome, and postural orthostatic tachycardia syndrome, to name a few. At first, I knew they would affect my life in some way, but I didn’t think I would have to make any sacrifices to take care of myself. I guess I thought my body would adapt or evolve somehow to fit into my life. Oh, how very wrong I was.

During the late summer and into early fall, I thought I had seen the worst of my chronic illnesses. With the humidity and heat disappearing, I thought winter would be better for my body. I thought I would be more focused on my seasonal affective disorder instead of pain, subluxations and syncope. I thought I could keep my job in fast food and continue attending college full-time. I thought it was simply impossible to be sick for so long and it would let up, that there was no way my symptoms could last a lifetime. I thought I would be OK and succeed in my current endeavors.

I thought.

I thought.

I thought.

Winter did not bring improvement. Winter brought stiff joints and ribs that had taken a new liking to wiggling their way out of line. Winter brought fibromyalgia flares that were just as bad as its initial onset. Winter brought brain fog that made me feel like I had wool stuffed in my brain. I didn’t feel like me anymore. I felt like someone had replaced my body with a broken doll. And, of course, winter brought seasonal depression, which despite hours in front of a sun lamp and an increase in my antidepressants would not cease to shadow my former optimism.

I tried. I tried to keep my job, but when pre-syncope scared me so much I thought I would faint into a deep fat fryer or grill, I put in my resignation. I tried to stay in college and even dropped a class to lighten my load, but my school is a 45-minute drive away which proved too much for my body to handle. I began to spiral into denial, hopelessness and depression. There had to be a way to make things work. There just had to!

But there wasn’t.

I am currently in the process of accepting my new way of life. I spend much of my time in bed. I still go out, but by “go out,” I mean grocery shopping with my mom as my guardian, returning library books I’ve read several times over, going to doctor appointments and picking up prescription refills. I have found some joy in writing, drawing, coloring, reading, playing video games, painting and social media. On rare occasions, I use a cane to get around. I am never bored, though, because handling my illnesses is a job in and of itself.

I still have plans for my future. It’s just a matter of accommodating my body, not forcing it to adapt to a life that is no longer mine. I have been born again into a new world, and I will survive.

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Traveling when you have fibromyalgia (or any other chronic pain condition) sucks. Even with the below tips, your trip is bound to cause you extra discomfort. I’m sorry – I understand!

​I have used all the ideas I am going to suggest. Some have worked for me, some have not…but they might work for you. I am 100 percent sure that not taking steps to make traveling more tolerable is guaranteed to bring you more pain, probably inducing a fibro flare.

Here are five things you can do to prepare ahead of time:

1. Check the Weather

Get details about the area you are going to – I just do a Google search. I like to check the weather to see not only what the forecast is calling for, but what the normal weather is. This way, ​if the area is having an unusual heat spike, I can pack for that. But also, knowing what the normal weather is like is so helpful. That heat streak may end, and I want to know I have packed extra items (layering) I may not have thought I’d need. This is a must for those of us who are temperature-sensitive.

​If you are sensitive to changes in weather, it can be invaluable to plan for a few possible bad days, plan activities around them, and have other plan in case the bad days don’t happen! The weather network is my go-to for weather forecasts.

2. Consider Food Sensitivities

Having a special diet can make traveling hard. I know I am lactose intolerant and very sensitive to MSG. If you have food sensitivities, search for the restaurants near where you will be staying and see if they offer online menus. Knowing ahead there are a few places where you can eat will help reduce stress and anxiety.

Also look up grocery stores, so you know where to stock up on snacks you can eat. Pick up some bottled water too – keeping hydrated is so important!

3. Pack A Go-To Bag

​Make sure it is easy for you to handle. Some items you might include:

  • Pack your medication bag and take more than you think you’ll need. Emergencies can come up and you don’t want to be without. Include a bottle of water to take medications with. Pack prescription medication in original bottles to prove they are for you.
  • Pack a paper list of all diagnoses, medications, doctor and pharmacy
    information, allergies and any other pertinent medical information you may need to provide to a hospital or clinic if you need one.
  • Any charge cords you are bringing. I usually drop mine into a glasses case to keep them together.
  • Ear plugs a great help if you want to sleep while traveling. They also help with noise sensitivities (will it be noisy where you are going?). I never forget these.
  • Bring any hot or cold packs you use. Look for over-the-counter products like heat patches (pharmacies or stores like Walmart would have them).
  • Dark sunglasses or an eye mask for light sensitivity or migraines.
  • Paper and pen to write down anything you want to remember if you struggle with fibro fog.

4. Plan Activities​

  • Research the activities you want to do/see while away.
  • Know ahead of time what sites are on the “bucket list” and prioritize them. You may not get to enjoy everything, but visiting the top items first will make the trip just as great!
  • Look them up online, make sure you are going at the right time of year and check if they are disability accessible (if needed).
  • Remember to schedule rest times or relaxing days (maybe by a pool?).
  • See if you can buy passes for the time you want to go or if they should be booked online or ahead of time. (Sometimes there are deals to be had by buying online.) I try to avoid anything date/time specific though since I don’t know how I will feel ahead of time.

5. Download Handy Apps

Maps, restaurant review sites, coupons, your banking app? There are so many available now – I suggest searching for the apps relevant to you and your needs when you travel (I bet there is even an app to tell you where the nearest washrooms are if you have IBD, IBS, etc. or just need to go).

I hope you find these helpful! ​Is there anything you do prior to traveling that you find helps?

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I got my diagnosis for fibromyalgia around 2014, seven years after I first found out what fibromyalgia was. The first time I mentioned to a doctor that I seemed to have a lot of the symptoms, the doctor laughed and told me not to rely on “Doctor Google.” She refused to discuss what my symptoms could be. Only that they couldn’t possibly be fibromyalgia.

Back then I was too nervous to push the point, too nervous to say I didn’t get my information from Google – I had a friend who was actually younger than me who had fibromyalgia, and she said we shared a lot of symptoms. But I pushed it so far out of my mind I actually forgot about it.

It was quite an interesting seven years. I moved houses nine times and found my way to some amazing doctors. Doctors who taught me that I needed to be as involved in my treatment as they were. They had the knowledge but only I knew how my body worked.

That was how, seven years later, a doctor brought up fibromyalgia to me, and I remembered that first appointment. Since getting the diagnosis, it has been easier to deal with the miasma of symptoms fibromyalgia tends to be.

Accepting you have fibro isn’t one simple decision. Here are a few aspects of the illness you can work on accepting first to help lead you to an overall acceptance of the illness:

1. Accept that sensory overload is a real thing.

Maybe make cards to explain it to other people!

Sometimes our brains take in so much information, and fibromyalgia turns us into this huge open nerve. All the information batters us over and over until we feel so frazzled it’s like our brain is torn open.

When this happens, pushing through it isn’t the answer as it can just hurt more. You need to find a quiet room with dark or low lighting. My partner made me a silk eye cover and wow, it’s amazing.

So when you overload, excuse yourself, go somewhere dark and quiet with a soft blanket and a nice, relaxing drink like hot chocolate. Just take an hour for you.

2. Accept that fibro can build up.

Just like a system that builds up grime each day, imagine we are dishwashers. They work well time and time again, then they work just slightly less well, then…not as well. Not drastically – just a tiny bit, but the grime keeps building up, and after a while they don’t clean anything. You might have to stop and clean it, taking out bits covered in limescale or…something (it might be obvious I’ve never owned a dishwasher, but I know something like this happens).

It happens with us, too. We do the same thing. We push ourselves a little bit each day, over and over, and it builds up. Soon we have to push even harder to do the same amount.

So just stop. Take a day. Put it on a calendar so you can be sure this day is clear. Give yourself a reboot. Curl up on the sofa and read, have a bubble bath with mountains of bubbles, snuggle a partner or pet…or both! Color a book…whatever you need to reboot.

Make sure it’s what you need. People are always telling me to meditate, but that doesn’t work for me – meditation stresses me out! So make sure your reboot is calibrated for you.

3. Accept that, sadly, not all doctors will believe you.

We know fibromyalgia is real. But even now, some doctors still do not think it is a real condition. I don’t know why they still have this outdated view, but sadly some of them do.

This does not mean you are a faker; it means your doctor is wrong and maybe it’s time to embark on the long, arduous journey of finding a new GP.

Fibromyalgia is very real. We can feel it in every inch of our bodies. It stretches into parts of our lives some doctors can’t possibly ever imagine!

4. Accept that not everyone experiences fibromyalgia in the same way.

I think this is why doctors have a problem with fibromyalgia. When looking at the huge list of all the possible symptoms and signs of fibromyalgia, sometimes I feel like I’m just checking things off – like I’m separate from my body, walking around with a clipboard. “Hmm, yes, skin randomly goes red for no reason… Heat causes hot flashes… Cold makes the knees creak… Tick, Tick, Tick…”

Not all of my ticks will match up perfectly with yours. Not all of your ticks will match up perfectly with another fibromite. This doesn’t mean none of us have fibromyalgia; it means fibromyalgia is huge.

However, finding other people with fibromyalgia can be incredibly uplifting. Maybe you find that the weird symptom you’ve had for years, unsure whether or not it was a “fibro thing,” is something they have, too! I didn’t know how validating having someone say, “Wow! Me too!” could be.

5. Accept that flares happen. It isn’t your fault.

Sometimes a flare will come out of nowhere and completely, 100 percent blindside you. Sometimes, you just know… You know it’s coming and you can trace it back to a particular event. Either way, it isn’t your fault.

Although, spending an extra 10 minutes in the garden and forgetting to wear a hat is a major no-no for me. If my ears get cold, the migraine monster will rise up from the depths and bite my head. I’ve known this trigger since I was 15 years old. Every time I forget to put a hat on, feel the ear go cold…

But I’ll spend longer beating myself up than the migraine itself lasts. My partners told me it isn’t my fault. I argued – I know the trigger, I know what happens if forget the hat.

But they have a point. It isn’t my fault that some tick in my body’s physiology causes me to have crazy pain when my ears get cold. Now this doesn’t mean I should go galavanting off outside in the cold with nothing in my ears, but, when I forget – and I will forget (fibro fog…we know it all too well) – blaming myself isn’t going to make me feel better.

*Extra bonus point for 2017 *

Love yourself. Care for yourself. Don’t beat yourself up. You didn’t ask for the fibro life – the fibro life chose you, and that isn’t your fault.

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I was treated for multiple sclerosis (MS) for three years by the chief neurologist of a hospital in Toronto, only to be told I don’t have MS. When I asked him what he thought I might have, he said, “I have no idea, but you can get a second opinion and maybe they can teach me something I don’t already know.” I left his office feeling very deflated and told my husband he was a pompous a** donkey.

I was tired of the widespread pain and the fatigue that attacked my body every day. I asked my MD to refer me to a rheumatologist because I had determined through my own research that I had fibromyalgia. My MD said, “You don’t have fibromyalgia because you have brain lesions.” After much persuasion I finally got the referral, walked into the specialist’s office and said, “I have fibromyalgia.” Indeed, I was right. I was finally validated… no longer were my symptoms all in my head!

I learned through a fibro support group that “fibro fog” does exist. Thank goodness I had an excuse for not having any short-term memory because I would watch a movie in the evening but the next day I couldn’t remember the name or the content. All I could remember was that the movie was either awesome or crappy.

A friend would say to me, “Do you remember when…” and inevitably I would say no. Then I would ask, “What did I do that time?” The friend would try to remind me of the silly things I had done and I would laugh because it was funny; and yet, I had no memory of that incident. People would say, “I told you that last week,” or I would say something only to be reminded that I had already told them that very something.

So, I wrote an email to my friends and family (to no avail) asking them to be patient with me and not say, “You told me that already” or “I told you that last week.” How embarrassing it is to not remember… Oh my, I just forgot what I was going to say right now! To not remember a word in the middle of a sentence or to trip over words is so frustrating. To not remember why you have walked into a certain room, to not remember where you put something you use all the time, to not remember the point of something you began talking about and to not remember the hiding space where you put something to keep it “safe” makes a fairly intelligent person feel not so intelligent.

Recently, my daughter-in-law told my sister she doesn’t believe I don’t remember conversations, and I was quite annoyed when I heard that. “She can remember; she remembers lots of things.”

However, I try very hard to see the positive side of things, and in this situation, I do have an advantage: not everybody can hide their own Easter eggs.

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