Top Three Hidden Reasons Your Fibromyalgia Symptoms Aren’t Getting Better 

If you had to name the top three reasons why people don’t improve, what would those would be?

One of my student coaches asked this question in our Certified Fibromyalgia Coach^® training program, and I think it's a great question.

Not just for students or coaches, but for you too.

If you've been trying all the things and you're still stuck — it's time to look at the hidden reasons holding you back.

There are plenty of obvious reasons why fibromyalgia symptoms don't improve. Having a doctor that doesn't know what to do with you, for example.

The things we're talking about today are much sneakier.

They're the hidden reasons that can keep you from feeling better.

Some of these are things you can change yourself. Some may require a little help. But all of them are things I've seen over and over again working with fibromyalgia patients.

Reason #1: You’re Not Listening to Your Body

Now, before you roll your eyes — hear me out. This one is absolutely more complicated than it sounds and I get that.

You and your body might have had a divorce.

It's so common for people with fibromyalgia to check out from the neck down. We're in so much pain, and have so much fatigue, that we almost have to check out in order to survive and get through the day.

At a certain point, though, we have to start checking back in. If we don’t, we'll never be able to improve.

So — what does it look like when you're not listening to your body?

Sometimes It's Conscious

Sometimes, we consciously choose not to listen. When you have three kids under the age of five at home, for example, you may not be able to sit down and rest like you're body is asking you to — because you’ve got to do what you’ve got to do. It's the season of life you're in — and sometimes that’s what has to happen. It is what it is, right?

Or maybe you’re in active denial. You know you shouldn’t but you’re choosing to do things anyway — because you're not ready to accept what it means to live with fibromyalgia. Maybe you don't want to accept you aren't as young as you used to be or that your body doesn't like doing those things any more.

Sometimes It's Unconscious

Often, we don't even know we're not listening to our bodies.

For example, maybe you're still acting as if you’re living in the same body you've always had and can do the same things you always did.

That's where this gets really sneaky. Unconscious, by definition, means you aren't aware you're doing it.

Newsflash, folks — you are not living in the same body. Literally. Your cells have all changed over. You are a different organism.

You are not the same person you were in your twenties — and you’re not the same person you were before fibromyalgia. 

That doesn’t mean your life is over or that we can’t get some of that back — we absolutely can — but we also can’t be in denial over the fact that life is different now. We are now in a body that has different needs.

If you find yourself thinking, “I should be able to do this,” or “I used to be able to do this,” or “Why can’t I do what I’ve always done?” — that's denial. And it is absolutely holding you back from getting better.

Another unconscious way we get tripped up is simply a lack of awareness. You're in a new body with new needs and new limitations — and we’re not always aware of what those changes are.

One of the assignments I give my students and clients is called The Book of You — or writing your body's owner's manual. In this assignment, you'll make notes of your unique needs and what it’s like living in your body. Maybe you jot down that you’re really not at your best until 11:00 AM. Or maybe you write down that driving in traffic is terrible for your nervous system, gives you a headache, and makes your fibro pain worse. Whatever those things might be for you, make a note of them. Write them in your Book of You.

Reason #2: Something Else Is Going On

The second reason I see people getting stuck is that there's something else going on — another illness or condition that’s either undiagnosed or undertreated.

So many times, people come to me because they've tried all the typical fibromyalgia treatments and nothing is working. When that happens, I start wondering what else is going on.

When someone is diagnosed with fibromyalgia, starts feeling better, then gets stuck and can't get past the plateau, it's usually because fibromyalgia isn't the whole story.

If you are trying all the fibro things and none of them are helping — it might be more than fibromyalgia.

Sometimes It Hasn't Been Diagnosed Yet

Here's two examples from my own life...

I was doing pretty well, and then a third of my hair fell out. I was tired all the time. My doctor did more testing and discovered that I have an autoimmune thyroid condition, Hashimoto's. Discovering that, we were able to treat it, and I was able to get over that hump. But if that had never been diagnosed, I might still be stuck in that place.

I also discovered that I have upper airway resistance syndrome — a condition kind of like sleep apnea. (I was literally waking up 45 times an hour, all night long.) If my doctor hadn't uncovered that, I would still be struggling to get a good night’s sleep — and I'd probably still be in pain.

When I was working on getting better, this was my philosophy:

A body is made up of a whole lot of parts. 

If I can make all the parts work as well as possible, then the whole is going to work better.

That's why we can't be afraid to track all those little things down.

There is no one that is more of an expert in your body than you. If there’s something you’re feeling and you’re not sure about it — ask. Talk to your doctors.

If you have a doctor who’s dismissive or not taking you seriously when you say, “Hey, there’s something else going on here” — it’s time to find a new doctor. Period.

Sometimes It's Being Undertreated

I also find that a lot of people have other conditions that are undertreated — largely because those things are being blamed on fibromyalgia. Headaches are a great example. Most people with fibromyalgia have headaches, but migraine, chronic daily headaches, and other types of headaches are separate diagnoses. More importantly, they have their own treatments.

If you’re being told — or if you’re thinking yourself — "Oh, I have fibromyalgia, so of course I get headaches," and you’re not actually pursuing treatment of those headaches, that will hold you back.

One of my students improved about 80% during our three-month class. Could you imagine having only a quarter of the symptoms you have now? If your pain is running at an 8 — an 80% improvement would mean now you're at a 1 or 2. That is huge. 

All she really did was focus on getting her headaches under control. She found a neurologist, tried some new treatments, got those headaches treated — and that improved her fibromyalgia. Since fibromyalgia is an amplifier, it takes whatever you’re experiencing and cranks it up. It turns up the pain, fatigue, and brain fog. 

When you remove anything that could be amplified, the fibro symptoms won’t be as bad.

Sometimes It Can't Be Fixed

The third part of this is a bit harder — some things just aren’t fixable. 

I wish we could fix everything, but we can’t. Degenerative disc disease. Certain injuries. Progressive conditions like osteoarthritis or rheumatoid arthritis. Lupus. Once the damage is done, it’s done. Sometimes, we can’t completely repair it.

If you find yourself in this position, be aware that you're only going to be able to improve so far — because you still have those other things going on.

That’s not a reason to stop trying.
But it is important to know what you’re working with.

Reason #3: You’re Not Ready, Willing, or Able to Do the Work (Right Now)

“The work” is whatever it is you need to do to improve your fibromyalgia. That could be any number of things: Doing less. Resting more. Trying a new supplement or medication. Making an appointment with a new provider. Changing your mindset or your diet. It could be all kinds of things.

I always joke that it was a lot of hard work getting my fibromyalgia in remission — and most of the time, that work looked like rest.

Sometimes your season of life means you can’t rest the way you need to. Maybe you’re single and you can’t stop working. Maybe you’ve got three kids under the age of five and you are the person who has to take care of them.

There may be reasons why you can’t do the work right now — and I want you to know that it is 100% okay if that's where you find yourself. 

It's absolutely okay for you to say, “You know what? This is not the time for me to work on this.”

Once you say that, though, you need to accept the situation and live within it as best you can. Sometimes that’s what we all have to do.

I was fortunate. I was married. My husband’s job paid all the bills. I could stop working when I was so sick and filed for disability. Not everybody can do that.

Past trauma could be another reason right now isn't the right time to do the work.

Sometimes we have to work on the trauma before we can work on the fibromyalgia. 

I’ve had many clients whose pain and fatigue didn’t improve all that much while we worked together — but what happened in their heads and in their hearts changed a lot. Sometimes that’s where we all have to start.

Then there’s the reality that sometimes we’re mentally and emotionally ready, willing, and able — but the resources aren’t there.

The problem could be financial. Many of the things that help improve fibromyalgia are not covered under insurance. They’re things you have to pay for out of pocket — or only a certain amount is covered. In my case, I get a certain number of chiropractor, acupuncture, and physical therapy visits for the year. When I was going every week or every other week, the number of covered sessions wouldn't last through the year. I'd end up having to pay out of pocket.

Action Steps

1. Do a little self-exploration.

Spend some time journaling and thinking through the top three hidden reasons and see where they might apply to you. Does one sound particularly familiar? Do you recognize something in your own life? That’s probably your starting point.

4. Give yourself permission. 

If now is not the right time to work on your fibromyalgia — because of your season of life, limited resources, or other things that need to be addressed first — that’s okay. You have my permission to say "now isn't the time", and stop worrying about it. When the time is right, you can begin again.