Living with Fibromyalgia

29 + 1 “DOs” to keep your fibromyalgia in check – Part 1 – DOs 1 through 15

 fibromyalgia dos list

Just so you know, this isn’t your mother’s to do list. From my own experiences, here are 29 + 1 ways I have tried to keep the fibromyalgia symptoms away.

Some work better than others, and you can count on my blunt honesty to tell you why or why not.

Keeping in mind that not two Fibro Warriors’ symptoms are ever identical, nor are the reactions to remedies equal, your results may vary.

It may also be that my DOs are your DONTs. And that’s just fine.

After all, I don’t know about you, but I sure don’t want to live in a boring world where everybody feels the same, thinks the same or even hurts the same!

So without further ado (drumroll please!), here are in no particular or logical order my list of XX ways to conquer the world. Sorry, wrong list. I meant my list of XX ways to conquer my fibromyalgia symptoms.

Ta-da!

1- Stay informed

OK so this one is a really good one. I like to do periodical internet searches about fibromyalgia. Of course, by now, I know what Fibro feels like for me. But honestly, reading somewhere that someone else feels the same, well it’s reassuring.

On top of that, new advances are made every day toward a better understanding of that Fibro beast. Not too long ago, I read somewhere -sorry, can’t remember where; can you say Fibro brain? – anyhow, I read that for the longest time, researchers and scientists thought fibromyalgia was a skeletomuscukar issue.

In other words, your bones and muscles. And that made sense, since those were the chief complaints from Fibro Warriors everywhere. But here is where it becomes fascinating: new research shows that Fibro might actually be a central nervous system dysfunction.

BOOM! That just happened! One bombshell for us in the Fibro War! Why is that important you ask? Well, because now millions of us are validated in the knowledge that what we already knew is now a scientific fact.

And that, my friends, is why you want to stay informed. It gives you reassurance, validation, new and old knowledge blended in one big place.

2- Budget your energy

Imagine each individual has a certain capital of energy for the week. Now divide that capital in half: now you have a Fibro Warrior’s energy capital.

Just like you would budget your money, budget your energy. Even if you feel good, because it will run out.

Let’s continue with the money analogy. Say I have $100 per week to spend on food. On Monday, I see this amazing new restaurant.

I have $100 in your pocket and I feel good about it! I go in and I spend $80 on a peanut butter and jelly sandwich (don’t judge me – it’s a hipster place). I’m pretty sure that by Thursday, I’ll have nothing left to buy food…

So in short: just because you feel good today, you shouldn’t overdo it. Treat your energy capital the way you would your money.

If you decide to rearrange your furniture by yourself one day, the next day you might be unable to get out of bed. This may or may not have happened to me…

3- Educate and advocate 

I know first hand how frustrating it is to have people doubt everything you tell them simply because they have ZERO clue what you go through every single day.

They know nothing. Zilch. Nada. And since they don’t know, then obviously it must be made up, right? Of course not! That’s as wrong as it gets!

This is where things are about to get real. You’ve been warned.

This is all your fault. Ok, maybe not all your fault, but mostly your fault.

I know, I know. You’re fuming in front of your computer right now. I can hear you cuss me and my descendant for the next seven generations.

This is what I mean by that: WE know. As Fibro Warriors, we know what it’s like. We know it’s real. We know there is no way anyone could fake this. But people at large don’t know. And like it or not, the responsibility to educate the public falls on us.

Talk to your loved ones, share articles on social media (hint, hint!), gently remind your friends and coworkers that you’re not choosing to be difficult.

Educate the people around you, and most importantly, advocate for yourself. That second one is a tough one.

It is much harder that none would think to speak up and self-advocate. I worked in special education for a while, and one of the principles we taught the kids was that they were their own best advocate. Self-advocacy is not innate.

You need to practice, and practice, and practice some more. It’s definitely easier said than done. But when you get to the point where you can confidently explain to your friend that you cannot move furniture, but could gladly drive the truck, it’s huge.

Educate and advocate. You are your own best representative.

capsaicin for fibromyalgia

4- Rub some Capsaicin on it

I can hear some of you guys getting impatient over there, behind your computer screen! “My goodness, when is she going to get to the practical stuff?”

Here you go. This one is for you!

I have personally found that capsaicin is super helpful for the costochondritis (i.e., the inflammation of your rib cage interstices – between your ribs).

It is made from a hot pepper extract, and when applied to your skin, it warms up the surface (which feels nice) and it penetrates the skin to act as an anti-inflammatory agent (to help the swelling to go down).

Now from my own trials and errors, here’s what you might want to know.

First, I use medical gloves to apply capsaicin to my skin. It is made from hot pepper extract, and it does have a bit of a burning sensation. Since it does go deep into your skin, washing it off is not enough.

Second, you want to start with a small amount and rub it in on a large surface. It takes a few minutes to act, so do not do what I did, which was applying three layers back to back because I thought it was not working. Talk about feeling the burn!

Third, do not cover the area, did not take a hot shower, do not lay on your stomach if you are using it for your sternum area, and do not fan it. Yes, I have done all of the above. Yes, I have regretted it every single time. It burns, people. It really burns. A lot.

And finally, do not be surprised if, after a few times using the capsaicin, you develop a tolerance for the burning sensation. It still works deep into your skin to reduce the inflammation.

For me, it is not as satisfying as feeling the burn because then you know it’s working. But ultimately, it is working.

Actually, if your core temperature goes up, say if you’re exercising for example, the capsaicin will come back to the surface of your skin with your sweat, and it will feel hot.

menthol oil for fibromyalgia

5- Give Menthol and Camphor a try

Menthol is awesome. It is one of those natural and safe remedies your great-grandma used to cure everything!

When applied to pain sites, menthol cools down the skin really quickly and tends to numb the nerve endings. It may not work on the cause of the pain, but it relieves the symptoms fast, and sometimes that is exactly what you need.

You can use menthol in many different forms.

I like essential oils. I dilute menthol with what’s called a carrier oil (grape seed oil or jojoba oil – a carrier oil has no specific property and it helps “carry” the essential oil where you want to apply it).

Once diluted, you can apply it to pain sites with a roller container, which is a small bottle with a “marble” at the opening that allows you to “roll” the oil over your skin.

Very much like with the capsaicin above, don’t cover it up and don’t take a hot shower. Also, the effects may be delayed by a few moments, so use caution and be patient.

After all, we know our nervous system is misfiring when we have Fibro pains, so it’s only logical that it would take a bit for the nerve signals to travel back to the brain.

Another natural product I like is camphor. It has the same type of action as the menthol does. It is warm at first, then it is cold. It works wonderfully well on all sorts of aches and pains.

Often, you will find commercial products already made with the right ratio of menthol to camphor to carrier. This eliminates the guess work.

I find mine at the health stores, or the natural food stores and co-ops. If you ask an associate for help, I am confident they will know exactly what you are referring to.

One note of caution: DO NOT apply essential oils directly to you skin. Keep in mind that they are ultra-concentrated and as such extremely potent.

It could hurt you! Think about it this way: taking a hot shower is relaxing, but you wouldn’t take a shower with boiling water. Moderate heat is nice. Extreme heat is not. Same with essential oils.

hot and cold packs for fibromyaliga knee pain

6- Use the good of hot and cold packs

Here you have it, folks. Captain Obvious is giving you advice now.

Kidding aside, and as blatantly evident as it might be, the good old hot and cold therapy still works. Who would have thunk it, right?

I guess there is some scientific science stuff behind it, like heat reduces inflammation and cold numbs the nerve-response signals. But who cares? All you need to know is that it works!

You can alternate hot and cold therapy every two hours. I’ll be honest with you: cold therapy never did much for me. I like menthol and camphor as stated before, but because they combine the two almost instantaneously.

But my oh my, do I love me some hot therapy! I actually made this sock and rice thing at home. I’m sure you’ve heard of that before. I took a long sock, filled it with rice, and I sewed it shut – you could always just make a tight knot.

It’s a knee-high sock, so it’s pretty long. When I feel tense or I have localized pain, I stick it in the microwave you about three minutes (note: your microwave may be different from mine, so I would suggest started with 30 seconds and going Jonny increments of 30 seconds until you find the right time for your own appliance).

Once the rice warms up, I just wrap it around my neck, or fold it to put it behind my back, or even wrap it completely around my knee or my wrist.

It helps me tremendously. Just make certain it’s not too hot, because after a few seconds on your skin, it will feel very warm.

On a side note, there are tons of products available out there that combine hot and cold therapies in sprays, pomade sticks, patches, wraps, etc. I’m afraid this one is a trial and error one, where you will have to find your own personal favorite.

7- Meds aren’t always evil 

Yeah, I know. Medications are kind of taboo for a lot of us. We have tried anything and everything under the sun to try to feel better.

But here is the thing: if I am offered a medication that could potentially make me feel better, then I will try it.

Honestly, some of the drugs I have taken in the past just didn’t do it for me. Still, I believe that the best approach to wellness is a balanced combination of holistic, eastern and western practices.

All three types of medicinal practices have positive, fully documented track records. That’s good enough for me to give it a try.

Like with everything else, you probably shouldn’t blindly pop pills. I mean, if you do research on everything else, obviously you will want to research meds as well.

Remember that an effective Fibro Warrior is an informed Fibro Warrior. Always be proactive.

Now about that question burning your lips: what meds do I recommend?

Well… Are you kidding me?! I’m not a medical doctor or an expert on anything. I’m not qualified to tell you what medications you should or shouldn’t take. That decision is between you and your medical doctor.

And if you must know, I take a tricyclic antidepressant, a nerve blocker and pain killers. Now go do your own research and be thorough. What works for me may not (and most likely will not) work for you.

find fibromyalgia doctor

8- Find a good doctor 

That one goes hand in hand with the point above. Finding the right doctor for you may be tough. I’m not saying you should go doctor shopping so you can get the answers you want. No, no, my friends. I’m saying find the right doctor for YOU. You need to find that one person you can trust with your life. Literally.

Where it gets tricky is when you consider that some doctors are still stuck in 1823. They don’t read research papers. They don’t look through professional publications. They simply don’t think that there is anything they don’t know.

And that is a problem.

Chances are, and regardless of how preposterous this may sound, you will encounter some time in your lifetime an actual doctor (with a real diploma, and all) who does not believe that fibromyalgia is real.

I know. That’s crazy talk. But sadly it is reality. I once saw a neurologist who told me that fibromyalgia was made up. A neurologist, people.

The one person who is supposed to understand nerve disorders. And once, I saw a rheumatologist who told me that the only thing that was causing my symptoms was my chest.

I’m not kidding. He literally told me I needed a boob reduction. For real, y’all. I’m a C cup. I did not see any of them after that first visit.

In other words, it is super important for you to find a doctor or specialist who understands you and takes you seriously. And always remember: no one knows your body better than you.

Get quality sleep for fibromyalgia

9- Get yourself some quality sleep

Oh is this one just overlooked way too often! Quality sleep is not sleeping with the TV on or sleeping on the couch. Quality sleep is not dozing off for 10 minutes here and there. Quality sleep is certainly not sleeping on a cement block or in a cotton candy nest.

So what is quality sleep, you ask?

Simple. Quality sleep starts with an environment conducive of restful reparative time. The ideal room has darkening shades to cut out street lights if necessary. The room should be quiet and at a comfortable temperature.

Personally, I like my room at 62 to 64 in the winter. I keep my windows wide open in the summer, but I live in a rural area with no foot/car traffic nearby, so that helps.

Experts have also linked better sleep to a good mattress. Here is the thing though: a good mattress for me may not be a good mattress for you.

For this one, you’re going to have to pretend you’re back in elementary school, and you’re the star of Goldilocks and the Three Bears. Don’t hesitate to try those mattresses out at the store and find the one that is just right.

Many Fibro Warriors also suffer from co-morbidities such as Restless Leg Syndrome and Insomnia. Make sure you develop a plan with your health care advise to get those other factors in check so you can get the best possible night’s sleep.

And last but not least, unplug before you enter your bedroom. It has been shown that the artificial light coming from our omnipresent smartphones and electronic devices tricks our brain into thinking our circadian cycle is reversed.

The effect is, to put it simply, that once we slip under those covers and check Facebook one last time for the evening, our brain interprets the light as daytime and keeps us up later than we should.

For honesty’s sake, I am absolutely terrible at this one. I am that person who gets so exhausted that she drops her phone on her face. And then picks it up and opens up Candy Crush…

10- Dive into a new hobby

I’ll say that I have not really had a chance to try this one out. I understand the concept, which is occupy your mind to divert your thoughts from the Fibro, but realistically, that just hasn’t been practical for me.

I’m busy. I’m always running (figuratively speaking, of course – I haven’t actually ran since middle school!). I just don’t have the time to pick up a brand new hobby.

But here is the thing: maybe that’s why I need to pick up a new hobby. Maybe the idea behind this concept is that I would actually slow down enough to learn something new, which could in turn alleviate some of my symptoms.

I think I just had an epiphany. I just may try to learn a new language or something. I’ll keep you posted on that!

11- Boost your dopamine levels

Boost my dopa-what? Your dopamine! I know you’ve heard that word before. But it took me a little while to understand what that actually is. So in case you’re like me, and you’re unsure of what it is, here you go.

According to dictionary.com, dopamine do·pa·mine (dō’pə-mēn’) is a monoamine neurotransmitter formed in the brain by the decarboxylation of dopa and essential to the normal functioning of the central nervous system. Got it? Yeah, me neither.

Let’s try again. According to urbandictionary.com, dopamine is the chemical in your brain that makes you feel and do happy things. Ok, now I get it!

Dopamine is essentially a teeny tiny molecule that is released when certain actions trigger them.

Eating chocolate and exercising, for example, both release considerable amounts of dopamine in your system.

When dopamine travels from one part of your brain to another, it gives you a nice feeling of contentment and happiness.

Now as a bonus, dopamine has the amazing side effect of blocking the molecules that transmit pain signal. See where I’m going with this? More dopamine = less pain signals!

Don’t quote my science on that, because I’m not an expert or anything, but truthfully, knowing that something as small as dopamine can make me feel better was a game-changer for me.

In practicality, what does that mean? Here are a few things you can do: intake less caffeine, limit sugars, avoid stress, stick to a routine, and do things you like! Easy peasy!

12- Take a nap

Now, I’m narcoleptic (a medical condition that makes my body fall asleep unexpectedly, at the most inopportune times). So taking naps is kind of my go-to remedy for everything!

Seriously, though, for the majority of people out there, and especially for Fibro Warriors, taking a short nap may help you refuel and allow you to finish the day strong.

There is no shame in being tired. It comes with the fibromyalgia package deal. Don’t be afraid to cut your day with one or two short naps if needed. It is much better to miss 20 minutes twice a day to regenerate your batteries than to be stuck in bed for three days because you pushed yourself too much.

But remember: everything in moderation. Sleep.org tells us that the ideal map to feel refreshed and ready to tackle the rest of the day is 20 minutes. So don’t forget to set that alarm clock to get you out of bed before the nap makes more damage than good.

If you sleep too long, you may end up waking up feeling groggy and foggy. As Fibro Warriors, we have enough of that fogginess without adding on to it with a bad routine!

13- Put yourself first 

Oh, but Servanne, my kids need me and the laundry needs to be done and the stove hasn’t been deep cleaned in ages and my mother-in-law is coming over so I need to make a nine-course dinner by 5 pm! How could I possibly put myself first?

Well, my fellow Warrior, let me explain it to you in a different way. If you’ve ever been on a plane, you will know exactly what I am referring to. If you have never been on a plane, well I guess you will just have to trust me!

When you are on a plane and it starts moving, a flight attendant comes on the loudspeaker and explains the safety procedures.

When they get to the part where they talk about the oxygen masks dropping from the ceiling, they always say that if you are traveling with someone who needs your assistance, you should always place the oxygen mask on yourself first before you help your travel companions.

Life is your airplane, folks. Fibromyalgia is that dreaded drop in cabin pressure. And just like on a plane, you need to take care of yourself first, because if you don’t, then you will not be able to help anyone else.

Your kids will be ok eating mac and cheese two nights in a row; the laundry is not going anywhere, and there’s always the dollar store if you run out of clean socks; who in the world is going to do a white glove inspection of your stove; and if your in-laws are worth your love, then they will be ok eating mac and cheese with the kids.

14- Keep a journal

That is something I would never in a million years be able to do. I’m not disciplined enough. But some Fibro Warriors swear by it, so here goes to nothing.

Keeping a journal may help you keep track of what works and what doesn’t work for you. The idea behind the journal is to see what foods or activities may trigger flare-ups.

It could be that certain foods are harder to break down for your body, and end up taking up more energy to process than the energy it gives off, leaving you exhausted. Or maybe some forms of exercise are wearing you out too quickly, or affect your joints too strongly.

Another factor to watch out for may be potential stressors in your life. Maybe you think meeting your college roommate Tina for coffee is fun, when in reality it subconsciously reminds you of how she backstabbed your bestie that one time. You may not even know that you don’t like Tina.

For me, I know who my Tina is, and the moment I removed her from my address book, I’ve felt a weight lifting off my shoulders. I did not need a journal for that. But to each his own, and it just may be your thing to keep journals. I’m more a list kind of gal.

15- Listen to your body 

Oh don’t look at your screen like that. You know exactly what I’m saying. Of course you know you need to listen to your body. That’s Fibro 101. Duh.

But do you actually do it? Do you actually take the time to stop and self-assess your needs and capabilities?

When you’re in the middle of doing something and you feel that pull in your back, or that ache in your arms, do you stop and tell yourself you’ll pick up where you left off tomorrow? Or do you power through it because it needs to be done?

I bet you understand this point a bit better now. We all know we need to be in tune with our bodies. That’s common sense. But I’m afraid this is one of those “easier said than done” things.

Yet it is primordial to sustain a good quality of life. It comes back to the fact that you should not deplete your energy resources all at once, or you will suffer the consequences dearly.

I’ll admit it without shame: I am not a good listener when it comes to respecting my body’s limits. Way too often, I will just do “one more thing,” “the last one,” “I’m almost done…” Why? Because I lack discipline, that’s why.

I’m not very good at self-limitations. So I need to enlist the help of my family sometimes. I need reminders that things can wait.

I forget that people love me for me, not for how clean my house is or how wrinkle-free my shirts are. I try to block out the memory of that one time when I shampooed the living room rug and I wasn’t able to get out of bed the next day.

Those are my first 15 DOs when you have fibromyalgia. The next 14+1 are coming up soon.

What do you think of these DOs so far? Have you learned anything new? Have you tried some or all of these? What were your experiences like?

And now for a bit of fun: what do you think the next 14 DOs are? What do you think the +1 will be? Try to guess and let’s see if we share a brain!

I’d love to hear from you guys in the comments!

Continue to part 2

About the author

Servanne Edlund

Servanne Edlund

Narcolepsy. Ankylosing spondylitis. Fibromyalgia. The perfect trifecta to sleep through life! As a mom of two teenagers, I need to keep going - so I have found coping mechanisms to overcome the hurdles placed on my path.

2 Comments

  • I see you have been around the block a few times with this fibro stuff I thoughly enjoyed what you have learned and tried and by the way I always check on what is new with Fibro news. Can not wait to hear more,

  • One of my favorite doctors ever, explained the hobby to me. She said that engaging your brain in “kinesthetic” things you enjoy is similar to meditation. Some of us don’t meditate well because it’s hard to shut off the brain. But things like knitting, painting, woodworking, etc can be similar to meditation as it focuses your mind and increasing the dopamine – because you are enjoying. She also said that singing to music can do the same thing.

    I love this article because it helps me remember some things I tend to forget. One of the hardest things about fibromyalgia has been trying to remember all the things I should be doing each day to help me feel better and all of the different medications, supplements, etc. Like morning meds, fiber later, proteins for breakfast, noon meds, don’t forget the cashew milk, when do you take the new medication (that kept me awake last night), night meds, night ritual to help me sleep which includes multiple steps, don’t forget showering, going to warm water therapy, getting sunshine, getting movement throughout the day, and the full time job, too. And I know I forgot stuff in there.

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