What Not To Do If You Have Fibromyalgia

I’ve been oh so lucky to have had Fibromyalgia since 2010. I sarcastically say that, but there’s lots I’ve learned.

None of this I knew starting out, when my first head stab broke my brain, or when my scalp suddenly turned to what felt like mush and bruises.

Or when I became a mom.

It would have been good to know. More than good.

So here’s what I’ve learned about what not to do if you have Fibromyalgia:

Here’s what not to do if you have fibromyalgia

In short, if you have Fibromyalgia, you should not:

Start pulling your hair out to make it feel lighter on your sore scalp
Forget to check up on your doctors and what they prescribe you
Think it’s all doom and gloom from here
Stay stagnant
Think rest is bad
Think you have to prove your pain
Forget to connect with others
Not experiment with pain management
Stay in the same shoes you’ve worn since high school
Think no partner will “get” you
Think that wearing the same comfy clothes is bad
Forget to have fun

I’m going to tell you why I think so below.

So again, here’s what NOT to do if you have Fibro:

1. Start pulling your hair out

Don’t start pulling your hair or rake through to shed thick hair in hopes of magically making your hair and thus scalp feel lighter.

I didn’t start this at the peak of my scalp pain (I could not have handled it), but a few years ago when Covid was crazy. And I wish I didn’t.

My hair is luckily very thick so not it’s not too noticeable, but I no longer have the insanely thick heavy-ass hair I once did.

And yet my scalp still screams in pain after wearing a pony or literally anything after a while (or even if I part it different ways).

Pulling your hair out will not decrease scalp pain (or at least, it didn’t for me). It will give you another bad habit.

2. Forget to check up on your doctors

My first doctor visit was to a neurologist.

Then to another neurologist. Eventually, I added acupuncture and got diagnosed through a rheumatologist, but for now, let’s stick with the neuros.

My first neurologist prescribed me topiramate (Topomax’s generic). It’s an anticonvulsant drug that can be used to treat hardcore headaches, like the idiopathic stabbing headaches I was having.

I moved on to a different neurologist (because I didn’t think he cared enough) and this doctor prescribed me a muscle relaxer, cyclobenzaprine (Flexeril), and tramadol (Ultram’s generic, a strong pain killer).

I continued the topiramate – I can’t remember if she cleared me to do so but must have. So at this time, I was taking multiple doses of multiple drugs a day.

Years later I learned about the possible reactions.

Flexeril and Ultram together can cause nervous system depression, with side effects such as respiratory distress, coma, or death. Drugs.com has their interaction labeled as “major.”

I was like OH when I found out.

Because at the time I’d had shortness of breath, or feeling totally weird and out of it. And I was age 17-20 while taking these medications. Probably not good on a still-growing brain?

To reiterate, check up on your doctor and the medication you’re taking. Ask questions.

Read: Unraveling the Mystery: Is Fibromyalgia An Autoimmune Disorder?

3. Think it’s all doom and gloom from here

Because it’s not! It’s so not.

I 100% get it if you want to punch me in the face.

In the face of pain (not mine from you punching me in the face by telling you it’s not going to be doom and death from here on out), this may or may not be something you want to hear.

But I promise you, as someone who has had days I wanted to swallow all my pills and be done, and who has reached the other side where the pain is fairly manageable (and with the knowledge that in an instant it could change, yes) that you will find pockets of time when the pain is barely there.

When it doesn’t feel so heavy. When you feel lighter, freer, and hopeful for your future.

So I implore you to keep holding on, keep fighting, keep researching, and keep advocating for yourself.

Life will become something worth living again.

4. Stay stagnant

For things to not go all doom and gloom, you’ve got to get out of your head and keep trying.

There’s a place and time for woe is me (I’ve had many of those), but you must not forget to keep moving, whatever that means to you.

Change your mindset. That one was huge for me. More stress equals more pain. Simple Fibro math.

Experiment with food elimination. After getting the go-ahead from your doctor, of course.

Try new pain management techniques. Creams. Lotions. Heating pads. Cool desk chairs (the Soul Seat looks interesting!).

Cupping sets.

Not doing updos with your hair.

Cheap. Expensive. Homemade.

Experiment.

Also don’t forget to set boundaries. Many of us are stagnant in people-pleasing, which roots stress. Boundaries are a protective barrier that helps keep stress at bay.

5. Think rest is bad

Our generation seems to be changing the status quo on rest versus hustle culture, but it’s still a hard mindset to shake.

It’s even harder to find guilt-free rest as a mom with Fibromyalgia.

But remember that rest is not bad.

Okay, too much rest sometimes can make you not feel so good.

The all-day napping after feeling all-night-and-day fatigue is still a staple in my book.

But I mean do not make yourself feel guilty about taking time to rest.

6. Think you have to prove your pain

You do not have to prove you’re in pain. I know it’s hard to deal with the judgment and shame because Fibromyalgia is not an illness we can “see”, like a rash, or even cancer.

Those people’s opinions do not matter. Your mental and physical health does.

7. Forget to connect with others

If you have Fibromyalgia, do not forget to connect with other people. These people being people with Fibro and those without.

It’s very easy to feel alone with this chronic illness. Do not suffer in silence forever.

8. Not experiment with pain management

Also, do not forget to experiment with your pain management. What works for another may not work for you, and what works for you at one point may not work in the future.

See if an elimination diet may be worth trying. Juicing. Yoga. Expensive creams. Cheap creams.

At-home cupping sets. Acupuncture. Comfier clothes. Looser socks.

Taking things off your plate as a mom and person.

Reduce your stress (haha, yeah right, but seriously).

The last two may be the hardest to tackle, but may also be the very most helpful for your pain.

9. Stay in the same shoes you’ve worn since high school

I mean this literally.

Do not wear the same TYPE of shoes you’ve worn since high school.

They’re too tight, they’re more uncomfortable than not, and you’re ready for a change-up.

Oh yeah, you too with the Nike’s? Why are they so small? (Granted I also think my feet have grown since having a kid).

I recommend Hoka. I found a pair on Mercari for about $50 versus +/ $150 retail.

So research! Research better footwear.

10. Think all partners don’t get it

There are people out there who aren’t dickheads and understand that you’re going through some serious shit.

I’m so lucky to be married to a great guy who supports me and “gets” my Fibro. He gets that sometimes I’ll conk out all day and need multiple mini-naps.

Or that my everything hurts and don’t want to be touched.

That fuck this shit I need to lay down, or take a volcano-level-hot shower, or go outside and ground myself, complain and bitch, cry, whatever.

11. Think that wearing the same comfy clothes is bad

I’ve learned that I like to be comfy and typically care very little about what others think. Kinda. Sorta. At least with the clothes I wear.

I’m not going to squeeze myself into tight skinny jeans when I could easily wear a comfy cotton jumpsuit instead.

Now I’m not always the most fashionable person in the room – ever – I’m totally okay with that.

I am totally, 100% down on being comfy and being able to do a random squat all the time. (You know, ‘cuz tight, achy hips)

12. Forget to have fun

Whatever you do, do not let Fibromyalgia steal your whole life.

This chronic crap is exceptional at stealing joy, would-be memories, relationships, happiness, fun…

But as you move through life, you’ll discover that you have more power over your Fibromyalgia than you previously thought was possible.

Use that power to never forget to have fun and live a good life.

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Your takeaway

There’s plenty to be said about what not to do if you have Fibromyalgia, and these are only my suggestions.

To summarize, don’t let Fibro steal your life (harder said than done, obviously, but you’ll figure it out).

Learn to love rest when needed.

Experiment to find what works for you.

What would you add to this list of what not to do if you have Fibro? I’d love to hear your wisdom so comment below!