Today, we’re talking about pain, specifically fibromyalgia’s brand of it.
Pain, as we generally know it, can be separated into three separate types. Firstly, we talk about something called nociceptive pain. This is the pain that we’re thinking of when we’re thinking of pain, as in this is what we feel with the bone-on-bone joints rubbing on each other, pain from a cut or scrape on our skin, or in most cases, an issue with one of our organs like gallstones or kidney stones (the worst!)
There’s a second type of pain most of us know called neuropathic pain. Following the word it’s derived from, it’s this pain arising from nerve irritation or nerve inflammation. Most commonly we’ll see this one associated with diabetes, pinched nerves coming from our back (e.g. sciatica!), autoimmune diseases like lupus or Sjogren’s, and various other causes.
In either case, pain receptors in our skin, joints, or along nerves send signals up the chain of our spinal cord to the brain that tells us how much something should hurt. Pinch your finger, it shouldn’t hurt – hit it with a hammer, you should be leaping out of your chair.
So we know nociceptive and neuropathic pain very, very well, but… then there’s the third and wholly different category of pain, one we don’t always recognize or understand well – centralized pain (also known as nociplastic pain). It gets far way too little attention but deserves far, far more. Centralized pain occurs when a usual nerve sensation hits our brain but gets perceived as more painful than it should be, and in reality has no business doing so. For example, a normal touch on our skin generates that same signal like described above and then carries it up the spinal cord to our brain, that touch telling our brain something about where we are in space and what’s touching us. When there’s centralized pain in the mix, those usual, normal signals might not just feel like a touch, our brain might tell us it’s a burning sensation, or worse, it’ll tell us it thinks an ice pick just went through our skin!
These sensations can range from mild, like adding a slight bit of pain to a light touch all the way to severe, where there’s a constant, agonizing amount of pain.
Said a bit differently, centralized pain is making pain louder, it’s like turning up the volume on normal nerve signals like you’d turn up an electric guitar amplifier to sound louder as you strum the strings. Imagine everyone else is listening to the volume of the guitar at a 2 or 3 out of 10 – like a quiet strumming of a guitar in a small room. Those with centralized pain can have that amplifier cranked up to a 5, 6, 7, or even 10 out of 10, translating to more and more pain the louder the amplifier gets. Someone without centralized pain stubs their toe and feels like they just stubbed their toe; someone with their amplifier cranked to 10 stubs their toe and will feel like someone just ran an ice pick through the entire foot, multiple times for hours, days.
If that’s not bad enough, it’s a pain that’s invisible. If you scrape your knee or even break a bone, it’s pretty obvious to anyone around you that you should be hurting. If we have neuropathic pain, others might not see it with the naked eye but we can usually detect what’s happening most the time—when we look at an MRI in a bad back with sciatica, for instance, we can see that nerve root being pinched. But… when it comes to centralized pain, it’s the most frustrating for everyone—those suffering most of all—because all of the scans, all of the blood tests, all the eyes out there, nothing at all will ever find anything that should be causing pain where there can be so, so much pain. It’s an invisible suffering.
At the end of the day, when we’re talking about centralized pain, we’re almost always talking about fibromyalgia. Fibromyalgia is a syndrome with centralized pain (without another cause) as its hallmark, often being associated with a smattering of other nonspecific, seemingly unrelated symptoms like brain fog, abnormal nerve sensations, gut issues, headaches, and/or often crushing fatigue.
It still remains, despite being 2024, one of the most poorly-recognized and poorly-appreciated disorders in medicine. Those with fibromyalgia can live with constant, invisible pain and often go years (I’ve seen a decade before!) before finally reaching a rheumatologist and hitting on the right diagnosis
What makes fibromyalgia and its centralized pain worse?
When talking about fibromyalgia, there’s a few factors we find are related and might worsen symptoms, pain at the forefront of those
- Insomnia or unrestful sleep. Having insomnia seems to be the most common unifying driver, affecting some 60-65% of individuals with fibromyalgia (see my previous post on the importance of sleep and fibromyalgia).
- Mental health. Those with any mental health disturbance – depression, anxiety, bipolar disorder, or others – tend to experience centralized pain more often and easier than those without. When these are severe or uncontrolled, fibromyalgia symptoms tend to be worse, too.
- Family history. People with a family history of centralized pain are more likely to experience it themselves. There is undoubtedly some genetic, inheritable link that we don’t fully understand yet. (sadly we don’t know how to change that aspect of it yet, either)
- Finally, it’s often we’ll find this in someone who’s lived through a traumatic event in their lives, ranging from serious car accidents and sexual assault to violent fights or war/combat. I describe these events as planting a seed that can, years down the road, sprout into fibromyalgia. We never fully “get over” serious trauma, but even when it’s something long past that you don’t think about day-to-day, it can still be there promoting fibromyalgia.
Some of these may carry over to the other disorders that experience centralized pain, like ME/CFS (chronic fatigue syndrome), long COVID, and Ehler-Danlos, to name a few – there seem to be some X factor in these conditions that promotes chronic, centralized pain. For instance when we go after insomnia and try to improve sleep in someone with Ehler-Danlos, we often end up with some improvement in pain too. Centralized pain is probably a shared underpinning between these and other disorders, not just fibromyalgia
What can we do about it?
First, so many individuals with fibromyalgia end up going from doctor to doctor looking for a diagnosis or cause of their pain. It does help to find an expert in fibromyalgia who can not only identify what you’re dealing with but ultimately can guide you on the course to improving symptoms. Full remission is possible and does happen. For others, we at least can improve symptoms to help get your daily life into a better spot than it was.
For the things that make centralized pain worse, I generally break these up into modifiable factors (meaning something we can change like sleep habits, stress management, diet, etc..) and nonmodifiable factors (unchangeable factors like our genetics or a past traumatic experience). What we aim to do is work on the reversible lifestyle factors and circumstances – anything we can modify, we generally aim to modify and improve, like optimizing sleep. The nonmodifiable factors like family history and past, traumatic experiences – those we can’t change, and they unfortunately and unfairly tend to linger as a negative effect that pushes against us when trying to improve.
Medications have a role for some but they’re almost always meant to be temporary. They aim to get you in a better state with either less pain day-to-day, better sleep, and often both. Some work on the fatigue aspect and get you the energy to get through the day. Either way, we try to taper off the medications as soon as possible. Some need these for longer if they help keep symptoms controlled when nothing else seems to do the trick.
Supplements do exist and can make a difference in the right person. Some examples include curcumin, palmitoylethanolamide (PEA), omega-3 fatty acids (fish oil), Vitamin D (when low), and a nicely bioavailable magnesium salt like magnesium glycinate when able.
Complementary services can make a huge difference in quality of life – physical therapy and physical activity (at the right intensity!) time and again has been shown to improve fibromyalgia pain and quality of life.
Acupuncture for the right individual can provide a tremendous amount of pain relief and generally gets recommended to most of my patients at least once. Other complementary modalities like yoga, diet changes, counseling, and others are all part of a strategy I use to bring symptoms down until we hit remission.
I’ve long been an advocate for those with fibromyalgia, aiming to increase awareness amongst the medical community and our community at large. That said, it still remains underdiagnosed and undertreated (and in the worst cases, some refuse to treat this at all – even some rheumatologists). If you currently have fibromyalgia or have symptoms you’re concerned could be, I encourage you to reach out to me or another expert who specializes in fibromyalgia to get the best possible care. I also highly recommend those affected and interested to visit (and support!) https://supportfibromyalgia.org/ and https://www.fmaware.org/, two fantastic non-profit patient advocacy groups that serve as a tremendous voice for advocacy and patient education.
For those who live in the San Diego area, particularly in North County in or near Carlsbad, I’m happy to see patients on-site in my Carlsbad office – check my contact page for phone number/email and reach out to learn more. For those in California but outside the San Diego-area, telemedicine is available and can be a great option appropriate for fibromyalgia.