Tag: fibromyalgia

  • What Is Fibromyalgia? (And What It Isn’t)

    What Is Fibromyalgia? (And What It Isn’t)

    Why this question matters

    You’ve been living with pain for months, maybe years. It shifts around your body – your neck one day, your hips the next, your hands the day after that. You’re exhausted in a way that sleep doesn’t touch. Your brain feels thick and foggy. You’ve had blood tests, scans, referrals. Everything comes back “normal”.

    And yet you’re not fine. Not remotely.

    Maybe your GP has mentioned fibromyalgia. Maybe you’ve typed “chronic widespread pain” or “what is fibromyalgia” into Google at 2am, trying to make sense of it all. Maybe someone has suggested it’s stress, or that you just need to get fitter, and a small part of you is wondering if they’re right.

    Here’s the thing: fibromyalgia is real. It’s recognised by the NHS, by NICE guidelines, and by pain specialists across the UK. The pain you feel isn’t imagined, it isn’t weakness, and it isn’t your fault.

    So what is fibromyalgia – and just as importantly, what isn’t it?

    What is fibromyalgia? A plain-language definition

    Fibromyalgia is a long-term pain condition where your nervous system becomes oversensitive to pain signals. It’s as if the volume knob on your pain system has been turned up too high. Sensations that wouldn’t usually hurt – a light touch, everyday movement, even the weight of clothing or bedding – can feel painful, uncomfortable or strangely “too much”.

    Medically, fibromyalgia sits under the umbrella of chronic widespread pain. That means pain affecting several parts of the body (both sides, above and below the waist) for at least three months. In current NICE guidance it’s grouped within chronic primary pain – pain that has become a condition in its own right, rather than being explained by obvious joint damage, inflammation or a single injury.

    In fibromyalgia, your brain, spinal cord and nerves process information differently. The alarm system is on a hair trigger. That doesn’t make the pain any less real. It simply means the main issue sits in how the nervous system works, rather than in something that shows up on a scan or a standard blood test.

    This isn’t about “thinking yourself into pain”. The system that’s meant to protect you has become over-protective. Once those pathways are reinforced over months or years, they can be very persistent.

    How fibromyalgia feels in real life

    Fibromyalgia almost never shows up as “just aches”. It usually arrives as a cluster of symptoms that don’t fit neatly into a single box.

    The pain itself often feels deep and muscular, as though you’ve done a tough workout you never actually did. It can feel like joint pain even when the joints themselves aren’t inflamed or damaged. Some people describe burning, shooting or stabbing sensations. Others notice that even a hug, a waistband, or lying on one side in bed feels surprisingly sore. The pattern shifts: shoulders might be worst one week, lower back or hips the next, or sometimes it seems to be everywhere at once.

    Then there’s the fatigue – not just feeling tired, but a bone-deep exhaustion that doesn’t lift with a lie-in. People say it’s like waking every day with only 10% battery, no matter how early they went to bed.

    Sleep itself is usually part of the problem. Many people fall asleep only to wake repeatedly, or sleep through the night but wake feeling completely unrefreshed. Doctors call this non-restorative sleep: your brain never quite drops into the deeper, restorative stages often enough, so you wake feeling as if you’ve barely slept at all.

    “Fibro fog” adds another layer. Losing words mid-sentence. Walking into a room and immediately forgetting why. Reading the same paragraph three times and still not taking it in. Mixing up dates, names or simple tasks you’d normally do on autopilot. It’s frightening, especially when you worry about things like dementia, but in fibromyalgia it’s usually part of the wider picture of chronic pain, poor sleep and a constantly over-busy nervous system.

    Many people with fibromyalgia also notice their senses feel dialled up. Background noise in a café, bright lights in a supermarket, strong smells or changes in temperature can all feel overwhelming. IBS-type gut symptoms, bladder urgency, headaches or migraines, dizziness, restless legs and muscle twitches are common travelling companions.

    Taken together, it can feel as if your whole system is turned up too loud.

    How is fibromyalgia diagnosed?

    There isn’t a single blood test, scan or “marker” that diagnoses fibromyalgia. That doesn’t mean it’s vague or made up – it means diagnosis is based on patterns rather than one lab result.

    In practice, a diagnosis usually comes from three strands woven together:

    Your story and symptoms. Your clinician will listen for pain affecting multiple areas of the body for at least three months, alongside things like fatigue, unrefreshing sleep and brain fog.

    A physical examination. Your GP or specialist will check painful areas, look at how the pain is distributed and make sure there are no obvious signs of joint inflammation, neurological disease or another clear explanation that would point in a different direction.

    Tests to rule out other conditions. Blood tests help exclude things like thyroid disease, inflammatory arthritis, anaemia or vitamin deficiencies.

    Normal blood tests do not mean the pain is “just anxiety” or “in your head”. They simply show that those particular problems aren’t present.

    Some GPs are confident diagnosing fibromyalgia themselves; others refer on to rheumatology or pain clinics. Whichever route you take, a good diagnosis should feel like someone has finally joined the dots with you – not like you’re being dismissed.

    What fibromyalgia isn’t

    Because fibromyalgia doesn’t show up clearly on standard tests, a lot of myths have grown around it.

    It isn’t “all in your head”.
    The brain and nervous system are central to fibromyalgia, but that doesn’t make the pain imaginary. Brain imaging studies show differences in how people with fibromyalgia process pain and sensory information. The pain is real; the wiring just works differently.

    It isn’t classic arthritis.
    Fibromyalgia doesn’t damage or deform your joints or bones. You can absolutely feel joint pain, stiffness and aching, but if you have visible swelling, warmth or deformity in a joint, that needs separate assessment. Some people live with both fibromyalgia and an inflammatory or mechanical joint problem – but they’re not the same condition.

    It isn’t laziness or a lack of fitness.
    Most people with fibromyalgia have pushed through for a long time before anyone names what’s going on. Chronic pain naturally leads people to move less, which can cause deconditioning over time – but that’s a consequence, not the root cause. You didn’t bring this on yourself by being “unfit”.

    It isn’t simply stress or depression.
    Stress and mood absolutely influence pain, and long-term pain feeds anxiety and low mood in very understandable ways. But fibromyalgia isn’t just “stress in disguise”. It’s better understood as a condition of nervous-system sensitisation, sometimes with mood and stress layered on top, rather than as a purely psychological problem.

    Why does fibromyalgia happen?

    The honest answer is that we don’t yet have a single, simple explanation. Fibromyalgia seems to develop from a combination of factors that add up over time.

    There may be a genetic vulnerability – fibromyalgia and related pain conditions run in families. On top of that, many people develop central sensitisation: over months or years, the nervous system becomes more and more protective, until it starts reacting as if everyday sensations are dangerous.

    There’s usually a trigger, or a cluster of triggers. For some people, fibromyalgia appears after a physical injury, an operation, an infection or a period of severe illness. For others, it follows a stretch of intense life stress – bereavement, relationship breakdown, work pressure – or a long spell of poor sleep and burnout. In many cases, several of these threads are tangled together.

    Hormones seem to play a role too. Fibromyalgia is more common in women, and some people notice their symptoms fluctuate with their menstrual cycle or around perimenopause and menopause. That doesn’t mean oestrogen changes are the whole story, but they’re likely part of it.

    There’s also growing interest in gut–immune–nervous system connections. Many people with fibromyalgia also live with IBS-type gut symptoms, and research is exploring whether changes in the gut microbiome and low-grade inflammation might interact with the pain system. At the moment, it’s safer to describe these as possible contributors rather than simple causes or cures.

    What we know with confidence is that fibromyalgia is a real neurobiological condition that emerges from a mix of biology, life events and environment. It’s not about being weak, negative or somehow failing to cope.

    How is fibromyalgia treated? A realistic overview

    There is no quick cure for fibromyalgia. Anyone promising to “fix” it in a month with a single supplement, boot camp or detox is overselling. But that doesn’t mean there’s nothing to be done.

    Most people who find a better balance with fibromyalgia do so through a combination of approaches that gradually turn the nervous system’s volume down and make life more liveable. The aim is “better and more manageable”, not perfection.

    Understanding and validation.
    Simply having a clear explanation – “this is fibromyalgia; this is how it works” – is surprisingly powerful. Knowing that your pain comes from nervous-system sensitivity rather than hidden damage can reduce some of the fear and confusion that automatically dial pain up. Being believed matters too. A GP or specialist who says, “Yes, this is real and it’s tough, but there are things we can try,” makes a huge difference.

    Pacing rather than boom-and-bust.
    Many people with fibromyalgia recognise the boom-and-bust pattern: a slightly better day appears, you rush to catch up on everything, and then you crash hard for days afterwards. Pacing is about stepping off that rollercoaster. It means spreading activity more evenly, building in rest before you’re desperate for it, and working out what feels like a sustainable “baseline” level of activity for you right now. From there, you can experiment with very gentle increases.

    If you notice post-exertional malaise (PEM) – where even modest physical or mental activity makes you significantly worse for a day or more – the approach needs to be especially cautious, more akin to ME/CFS-style pacing than to classic graded exercise. The key is respecting the limits your body currently has, not pushing through them because you “should” be able to.

    Sleep support.
    Non-restorative sleep is such a core piece of fibromyalgia that any improvement here tends to ripple out into pain, fatigue and brain fog. Helpful strategies include keeping a fairly consistent wake-up time (even after a bad night), getting some daylight soon after waking, creating a short wind-down routine in the evening and looking at anything else that might be disrupting sleep – from medication timing and pain to worries that hit hardest at 2am.

    Cognitive behavioural therapy for insomnia (CBT-I) is one of the most evidence-based treatments for long-term sleep problems, and it can be adapted for people with chronic pain. It doesn’t suit everyone, and it does require some effort, but for some people it makes a real difference to sleep quality over weeks and months.

    Movement within your limits.
    Movement helps pain, mood, sleep and general health – but only if it’s done in a way that your system can tolerate. For fibromyalgia, “no pain, no gain” is usually the wrong approach. For some people, helpful movement looks like short, gentle walks, stretches or water-based exercise. For others, especially when symptoms are severe, it might start with very small, structured movements around the house or in a chair.

    The key is to work with your body, not against it: start low, go slow, and watch how your symptoms respond over the next 24–72 hours rather than just in the moment.

    Emotional and psychological support.
    Living with long-term pain is emotionally hard work. Therapies such as CBT or acceptance and commitment therapy (ACT) can help people find ways to live alongside symptoms, reduce the intensity of distress, and make room for things that still matter to them. That doesn’t mean your pain is “just psychological”. It means your brain, body and emotions are all connected – and if one part is under constant strain, it’s helpful to support the others.

    Medication – where it fits, and where it doesn’t.
    Medicines sometimes take the edge off fibromyalgia symptoms, especially when used alongside the approaches above, but they’re rarely a complete solution on their own.

    In NICE guidance for chronic primary pain, the main medicines considered are certain antidepressants, such as amitriptyline or duloxetine. These are used at lower doses than for depression and may help calm overactive pain pathways and sometimes improve sleep.

    Other medicines, such as pregabalin or gabapentin, are generally reserved for people who also have clear nerve-type pain or another neuropathic pain condition, and usually under specialist advice. NICE is cautious about starting these purely for chronic primary pain.

    On the other hand, long-term opioids (like codeine or tramadol), benzodiazepines, and using paracetamol or NSAIDs as stand-alone treatments are not recommended for chronic primary pain in general. They may still have a role for other conditions you might also have – for example inflammatory arthritis – but they’re not good long-term tools for fibromyalgia-type pain on their own.

    Medication is very individual: what helps one person does little for another, and side effects often limit what’s realistic. The goal is to find the smallest effective dose of the simplest regimen that gives you some relief without too many downsides, and to combine that with non-drug strategies.

    Can fibromyalgia get better?

    Fibromyalgia doesn’t follow a single script. Some people find their symptoms are fairly steady over time. Others notice waves and phases – better stretches followed by flares. A smaller group see quite marked improvement over the years.

    It isn’t always relentlessly downhill. With the right mix of pacing, sleep support, movement within limits, emotional support and, where appropriate, medication, many people find that their pain becomes less overwhelming, crashes become less intense or less frequent, and life starts to feel a little more spacious again.

    You may not get back to how things were before fibromyalgia appeared. But it’s entirely reasonable to hope for more good days, shorter flares, and a life that feels more like yours again, rather than something ruled entirely by pain.

    Quick answers to common questions

    Is fibromyalgia real?
    Yes. It’s recognised by the NHS, by NICE, and by pain specialists and researchers worldwide. Studies show measurable differences in how people with fibromyalgia process pain and sensory information.

    Is fibromyalgia an autoimmune disease?
    At the moment, fibromyalgia isn’t classed as an autoimmune disease. Classic autoimmune illnesses involve the immune system directly attacking tissues, which isn’t what we see in fibromyalgia. It’s better thought of as a condition of nervous-system sensitisation, although there may be some immune and inflammatory involvement that researchers are still unpicking.

    Can fibromyalgia be cured?
    There’s currently no cure. But symptoms can be reduced and better managed with the right mix of self-management, medical support and time. The focus is on improving quality of life rather than chasing a complete disappearance of every symptom.

    Will exercise help, or make me worse?
    It depends very much on how it’s done and on whether you also experience post-exertional malaise. Gentle, well-paced movement within your limits helps some people over time. For others, especially where activity reliably causes big delayed crashes, the priority is careful pacing and energy management first, with tiny movement experiments built in very gradually.

    Is fibromyalgia connected to gut health or hormones?
    Both seem to be part of the wider picture. Many people with fibromyalgia have IBS-type symptoms, and hormonal changes (for example around perimenopause) can influence how symptoms feel. Supporting gut health and hormone balance can help as part of a bigger plan, but they’re unlikely to be magic bullets on their own.

    Disclaimer: This article provides general information about fibromyalgia and is not a substitute for individual medical advice. If you’re experiencing chronic pain, fatigue or other worrying symptoms, please speak with your GP or a specialist. Everyone’s situation is different, and what works for one person may not work for another.

    Next read: If you’d like to understand why sleep is such a big deal in fibromyalgia, read our guide to fibromyalgia and sleep


    Key resources & references

    Written by Stems From The Gut
    Created by someone living with fibromyalgia, chronic pain and messy gut issues. I write in plain English to help you feel more informed and less alone. You can read more about who we are and how we use evidence on the Authors & Medical Stance page.

  • Welcome to the Stems From The Gut blog

    Welcome to the Stems From The Gut blog

    Living with fibromyalgia or chronic primary pain can feel like navigating a fog with no map. One day you’re managing; the next you’re flaring and can’t remember why. Your GP might have given you a diagnosis, but not much explanation. Online, you either find miracle cures that don’t work or complicated research you can’t make sense of when you’re exhausted.

    That’s where Stems From The Gut comes in. This is a fibromyalgia chronic pain blog that explains the science behind your symptoms in plain English, without over-promising or overselling. It’s here to help you understand what’s happening in your body – especially the gut–brain connection – so you can make informed choices that actually fit your life.

    You’re not looking for another person telling you to “just try harder”. You’re looking for realistic, evidence-informed support. That’s exactly what you’ll find here.

    What you’ll find on this fibromyalgia chronic pain blog

    This blog focuses on fibromyalgia and chronic primary pain, plus overlapping conditions like ME/CFS and Long COVID. The posts cover the topics that actually matter when you’re living with these conditions:

    Sleep and circadian rhythm. Why your sleep is disrupted, how that affects pain and fatigue, and what might genuinely help without requiring heroic effort.

    Gut health and the gut–brain–immune connection. How your digestive system, nervous system and immune system talk to each other, and why that matters for fibromyalgia symptoms. This isn’t about promising gut-healing cures; it’s about understanding the biology so you can make sense of your experience.

    Flares, pacing and nervous-system support. How to recognise your patterns, work with your limits instead of fighting them, and manage the boom-and-bust cycle that so many of us fall into. No graded exercise plans, no “push through the wall” advice – just pacing that respects post-exertional symptom worsening.

    Gentle lifestyle ideas that respect energy limits. Small, practical adjustments to movement, food, rest and routine – things you can actually do when you’re already exhausted.

    Everything is written with the understanding that you’re managing a real, physical condition. Not “all in your head”, not something you can positive-think your way out of.

    Who this is for (and who it isn’t for)

    This blog is for you if you’re tired of feeling dismissed. If you want explanations that respect both the science and your lived experience. If you’re fed up with conflicting advice that ignores how severe your fatigue or pain actually is.

    It’s for people who want plain-English help understanding fibromyalgia, chronic pain and why their body responds the way it does – without the hype or the judgement.

    It isn’t the right blog if you’re looking for quick miracle cures, or if you want someone to tell you that you just need to exercise more and think positive. Those approaches don’t work for fibromyalgia and chronic primary pain, and this blog won’t pretend they do.

    How we talk about evidence and safety

    Every post on Stems From The Gut is evidence-informed and, where relevant, aligned with NICE guidelines and current research. That means the information you read here is based on what the science actually says – not exaggerated, not twisted to sell you something.

    At the same time, this blog is honest about uncertainty. Fibromyalgia research is still developing, and there’s a lot we don’t know yet. When the evidence is unclear or mixed, the posts will tell you that.

    This is general information, not personal medical advice. It can’t replace speaking with your GP or specialist, and you should always check any changes to your routine or treatment with your own doctor first. But it can help you have more informed conversations with them.

    Where to start

    If you’re new here, you can read more on the About page to learn about the story and aims behind Stems From The Gut. It explains why this blog exists and what it’s trying to do.

    Head to the Articles page to browse posts on fibromyalgia, sleep, flares, gut–brain topics and more. Start wherever feels most relevant to what you’re dealing with right now. You don’t need to read everything at once – come back when you have the energy.

    A gentle closing note

    Living with fibromyalgia or chronic pain doesn’t mean you’re lazy, weak or failing. It means you’re managing a complex, often invisible condition that affects multiple systems in your body. That takes enormous effort, even when no one else can see it.

    This blog is here to help you feel a little less alone, and a bit more equipped to understand what’s happening. One small step at a time, at your own pace.

    If you’re not sure where to begin, start with the basics below, or browse everything on the Articles page.

    Where to Start

    • Begin with our overview: What Is Fibromyalgia? (And What It Isn’t)
    • Then explore Fibromyalgia and Sleep: Can Fixing Your Sleep Really Help Pain and Exhaustion?
    • When you’re ready, read Fibromyalgia Sleep and Flares: How Bad Nights Turn Up Pain and PEM to understand why bad nights can trigger crashes

    Key resources & references

    NHS – Fibromyalgia overview

    NICE guidance on chronic primary pain (NG193)

    NICE guidance on ME/CFS: diagnosis and management (NG206)

    Versus Arthritis – Fibromyalgia

    Fibromyalgia Action UK (FMA UK)


    Written by Stems From The Gut
    Created by someone living with fibromyalgia, chronic pain and messy gut issues. I write in plain English to help you feel more informed and less alone. You can read more about who we are and how we use evidence on the Authors & Medical Stance page.