11 Things People with Fibromyalgia Do That Seem High Maintenance But Really Aren't

When you have fibromyalgia, life can be a little...unique. Simple activities or chores that other people do without a single thought can turn into major challenges, especially during a fibromyalgia flare-up. And it's easy to feel self-conscious or guilty for making seemly "high maintenance" requests that actually help us survive and thrive with chronic illness.

11 Things People with Fibromyalgia Do That Seem High Maintenance But Really Aren't

That's why I thought it was past time for me to write a sister post to my popular, "11 Things People with Celiac Disease Do That Seem 'High Maintenance' But Actually Aren't." So whether you have fibromyalgia and need a reminder that your "high maintenance" requests are 100% warranted and normal, or you don't have fibro and need help understanding what living with fibromyalgia is like, keep reading to learn 11 things fibromyalgia warriors do that seem high maintenance but really aren't!

1. Always traveling with a personal pillow, heat pack and other chronically awesome secret weapons.

'Cause when your neck, back and other muscles like to randomly freak out, making sure that you have a comfy pillow that won't leave a kink in your neck is a traveling MUST. Meanwhile, heat packs are ideal secret weapons for knotted muscles from hours sitting in a plane or car. In fact, when I'm going on long road trips, I'll even bring my heat pack and leave it on the inner car dash to heat up in the sun. If your car doesn't have heated seats to help your back during long travel days, that sun-heated heat pack can make a big difference!

2. Needing a realllly good bed.

I wish I could be that kinda girl who can fall asleep on a sofa, sleeping bag or very hard bed and wake up feeling like a well-rested Sleeping Beauty the next day. But at least in my experience, fibromyalgia sets HIGH standards when it comes to acceptable sleep conditions. Plus, since people with fibromyalgia already have a harder time falling asleep and sleeping deeply, having a comfy bed that makes the process a little easier is even more important.

(And I promise: we - meaning everybody with fibromyalgia - are a whoooole lot happier and in a lot less pain when we have a good night's sleep on our side! So helping us sleep well is basically one of the BEST gifts you can ever give a fibromyalgia warrior!)

11 Things People with Fibromyalgia Do That Seem High Maintenance But Really Aren't

3. Wearing comfortable, supportive shoes 24/7.

Sure, there are plenty of fashionistas with fibromyalgia out there who wear high heels regardless of any discomfort. But since fibromyalgia already involves full-body muscle aches and pain, understand that we may err more on the side of comfort than chic.

4. Sticking to a routine.

Living with a chronic illness like fibromyalgia feels kinda like trying to put together an advanced jigsaw puzzle when all the pieces are hidden throughout your house. Life is full of trial and error, and figuring out what foods, activities and exercises make you feel good or trigger a flare-up. And once we figure out a routine that keeps our muscles relaxed, our mind clear and our body relatively happy...we like to stick to that routine!

Now, I know that sometimes my semi-rigid schedule of stretching before bed or drinking a certain amount of water every day can frustrate my more spontaneous friends and family. However, I'm just doing what I need to do for my body to function relatively well. And if you have fibromyalgia and sometimes feel "rude" or guilty for sticking to a schedule...know that you aren't doing anything wrong and you aren't alone. Plus, the people who really matter in your life will make the effort to understand your chronically quirky schedule and find a happy compromise that makes them, you (and your body) pretty dang happy!

11 Things People with Fibromyalgia Do That Seem High Maintenance But Really Aren't

5. Sleeping in, taking naps and/or going to bed early.

My mom also has fibromyalgia, and all while I was growing up, I remember hearing her apologize for sleeping in so late on the weekends or having to go to bed so early. Now that I'm out in the real world and trying to "adult" as someone with fibromyalgia, I often find myself saying the same thing to friends who want to go out for late-night drinks or meet up for an early morning study party.

But the fact is when you have fibromyalgia, you don't sleep as well as the average person...so we need to sneak in extra sleep whenever and however we can. 

6. Following a specific diet.

After I received my celiac disease diagnosis and went gluten free, one of the biggest surprises was how eating gluten free helped my fibromyalgia pain - and my mom's, after she went gluten free was well. More and more research is connecting a gluten free diet with relief from fibromyalgia pain, however. Plus, around 70 percent of fibromyalgia warriors struggle with irritable bowel syndrome or other digestive problems.

Obviously, everyone is different and everyone - including people with fibromyalgia - thrives on a different diet. Plus, there are countless different suggestions and studies out there about what people with chronic pain "should" and "shouldn't" eat. What I hope more people realize, though, is that fibromyalgia affects much more than just our joints and muscles. It can also affect what we eat and how certain foods make us feel.

11 Things People with Fibromyalgia Do That Seem High Maintenance But Really Aren't

So when we say we "can't" eat something because it will make us feel bad or worsen our joint pain, we're just being honest and doing the best we can to fuel a happy, healthy bod!

7. Taking it exxxxxtra easy when a cold front comes through.

For some people, a cold front may involve nothing more than grabbing an extra sweater before they leave for work. In many people with fibromyalgia, though, cold weather - and just big weather changes in general - can trigger a major spike in our pain and fatigue.

So, no, we aren't just being a "baby" when we're shivering in four layers of clothing. When people with fibromyalgia get chilled, they seem to have a harder time warming up again! And on that same note, yes, we may need some extra sleep and downtime and pain killers when the temperature drops.

On the plus side, though, our joints may tell us about an incoming cold front waaaaay sooner than the local news. Just call us your personal weatherman!

8. Regularly canceling plans.

I get it. It's suuuuuper annoying when we cancel plans on the regular. But we don't do it because we're flighty or we take people's time for granted. A lot of the time, we just never know when our body is going to have a flare-up...especially since it can freak out after we do something we've done hundreds of times with no problem.

11 Things People with Fibromyalgia Do That Seem High Maintenance But Really Aren't

And trust us. We soooooo appreciate the friends and family who show us a little extra grace when we have to reschedule something yet again.

9. Asking people to avoid wearing allll the perfume.

Fun fact: increased light, touch and smell sensitivity are all common in people with fibromyalgia. So when it comes to perfume, we typically think less is more!

10. Constantly fidgeting and changing positions.

Spending hours sitting or standing in the exact same position is almost guaranteed to trigger a muscle knot or flare up...so I'm constantly moving. And I know many people with fibromyalgia do the same.

11. Asking for help with suuuuuper simple chores.

Of course, there are always chores that people don't like. (And if you actually enjoy scrubbing bathrooms, please let me in on your secret!). However, when you are living with chronic pain, there are some really simple chores that are waaaaay harder than people might expect. For example, scrubbing the shower often throws my neck and shoulder muscles totally out of whack.

11 Things People with Fibromyalgia Do That Seem High Maintenance But Really Aren't

So if we ask for a helping hand with something small like vacuuming or going out to buy groceries...know we're doing our best.

The Bottom Line

I like to joke to my boyfriend that I'm suuuper low maintenance...except when it comes to my sleep and my food! All laughs aside, though, having a chronic illness like fibromyalgia means that your life looks a little different than the average person...and that's totally OK.

Because at the end of the day, every person has the same goal: to enjoy a decently healthy, happy life. And if your chronic illness means you need to make a few special requests to do that...the people who really get you will be happy to help!




What's one "high maintenance" thing you do because of your chronic illness? Tell me in the comments!

Comments

  1. I always thought high maintenance referred to someone who wanted a lot of jewelry, expensive travel, and fancy dinners out. Since what you need isn't expensive, I wouldn't worry about it. Great list of things a person must do with Fibro, but most people can skip, and they still feel ok.

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  2. I find it's the simple daily things that make me high maintenance. Cooking and grocery shopping are very hard for me, but something that has to be done regularly. I tend to order a lot more often than cooking or groceries... even though I can get the groceries delivered.

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  3. I've been celiac my whole life (diagnosed age 5) and recently received my fibro diagnosis but probably have had it since 20 (im 26 now).

    Asking my partner to brush their teeth often and asking not to be touched for the forst 20-30 minutes after i wake up are both big ones that have got me the high maintenance look aha. Or stating that doing my hair hurts my arms! Turns out they are all symptoms and have gotten slightly easier since beginning a care routine!

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