Tag: ME/CFS

  • PEM-safe sleep tools for fibromyalgia and ME/CFS insomnia

    PEM-safe sleep tools for fibromyalgia and ME/CFS insomnia

    If you live with fibromyalgia or ME/CFS, you’ll know that sleep problems aren’t just about struggling to drift off. You might finally fall asleep at 3am only to wake feeling like you haven’t slept at all. Or you collapse into bed exhausted, yet your body refuses to switch off that frustrating “tired but wired” state that so many of us recognise. The sleep disturbance in these conditions runs deeper than ordinary insomnia, and it’s tangled up with pain, nervous system dysregulation, and the ever-present threat of post-exertional malaise.

    Here’s what can make things worse: well-meaning advice designed for otherwise healthy people with insomnia. Standard sleep programmes often encourage restricting time in bed, pushing through daytime tiredness, and increasing activity to “build sleep pressure.” For someone with post-exertional malaise (PEM), following that advice can trigger a crash that sets you back for days or weeks. If you’ve ever felt worse after trying to fix your sleep, you’re not imagining it, and you’re certainly not alone.

    In this guide, we’ll walk through a set of PEM-safe sleep tools that work with your body’s limits instead of against them.

    For a deeper look at how fibromyalgia affects sleep, see What is fibromyalgia? (and what it isn’t).

    This guide takes a different approach. We’ll explore PEM-safe sleep tools that work with your body’s limits rather than against them. You’ll find gentle adaptations from evidence-based insomnia therapies, nervous system calming techniques that don’t require energy you don’t have, and honest information about sleep aids. Nothing here promises a cure, but these supports can make difficult nights a little more manageable.

    Key takeaways

    • PEM changes the rules: Standard insomnia advice assumes you can “push through” tiredness to build sleep drive. With fibromyalgia and ME/CFS, this approach can trigger crashes and worsen symptoms, so everything here is adapted with that in mind.
    • Pacing comes first: Protecting your energy envelope throughout the day is the foundation of better sleep. You can’t optimise nighttime rest if you’re already in energy debt.
    • Borrow gently from CBT-I: Cognitive Behavioural Therapy for Insomnia has helpful elements, particularly the cognitive tools and sleep environment work, but its sleep restriction component isn’t safe for people with PEM.
    • Low-risk supports exist: Nervous system calming techniques, environment adjustments, and certain supplements may help, though evidence varies and nothing works for everyone.
    • Know when to seek help: Persistent sleep problems, suspected sleep disorders, or worsening symptoms warrant a conversation with your GP or specialist.

    Why standard insomnia advice can backfire with PEM

    Cognitive Behavioural Therapy for Insomnia (CBT-I) is the gold-standard treatment for chronic insomnia in the general population. It works remarkably well for many people, and understanding why helps explain why it can be problematic for us.

    Standard CBT-I has four main components. Sleep restriction therapy limits time in bed to match actual sleep time, deliberately inducing mild sleep deprivation to increase “sleep pressure.” Stimulus control asks you to get out of bed after 15-20 minutes of wakefulness and only return when sleepy. Cognitive restructuring addresses unhelpful thoughts about sleep. And sleep hygiene covers the usual advice about caffeine, screens, and bedroom environment.

    The conflict lies primarily with sleep restriction and stimulus control. These techniques require you to intentionally build up tiredness and push through daytime sleepiness to consolidate sleep. For someone without PEM, this creates a temporary dip in daytime function that resolves as sleep improves. For someone with ME/CFS or fibromyalgia with PEM, sleep deprivation is a known crash trigger.

    The 2021 NICE guideline for ME/CFS (NG206) explicitly warns against any programme based on “fixed incremental increases” in activity, and emphasises that rest is “part of all management strategies.” The guideline recognises that people with ME/CFS need daytime rest periods, the opposite of what strict stimulus control demands. Getting in and out of bed repeatedly when you can’t sleep may itself use energy that triggers symptoms.

    This doesn’t mean we should dismiss CBT-I entirely. The cognitive elements addressing anxious thoughts about sleep and reducing the pressure we put on ourselves can be genuinely helpful. The key is knowing what to adapt. We can borrow the gentler tools whilst protecting ourselves from the components that could cause harm. For more on how sleep disruption interacts with symptom flares, see our guide to fibromyalgia sleep flares and PEM.

    PEM-safe sleep tools: foundations for better rest

    These PEM-safe sleep tools for fibromyalgia and ME/CFS insomnia respect your energy limits whilst creating conditions that make sleep more likely.

    Protect your 24-hour energy envelope

    The energy envelope is a core concept from ME/CFS management, now reflected in NICE guidelines. It means staying within your available energy rather than spending more than you have. When you exceed your envelope during the day, you’re more likely to be both exhausted and wired by bedtime and more likely to experience PEM that disrupts sleep for days afterward.

    Practical pacing for better sleep includes planning rest periods throughout the day rather than saving all your rest for nighttime. It means stopping activities before you feel exhausted, and recognising that cognitive and emotional activities use energy too not just physical ones. On days when you’ve had unavoidable exertion, adjusting expectations rather than trying to “catch up” with extra activity can help protect your sleep.

    NICE NG206 recommends agreeing “a sustainable level of activity as the first step, which may mean reducing activity.” This isn’t about being lazy it’s about preventing the boom-and-bust cycles that wreck both daytime function and nighttime rest. Your energy envelope fluctuates, and learning to read your own limits is part of living well with these conditions.

    A softer wind-down routine

    A consistent evening routine signals to your body that sleep is approaching, but with fibromyalgia or ME/CFS, the routine itself needs to be low energy.

    About two hours before bed, begin dimming lights and reducing screen exposure. Blue light suppresses melatonin production by up to 85%, so switching to lamps, candles, or low lighting helps your body’s natural sleep signals emerge. If you need screens, blue light blocking glasses or night mode settings can reduce the impact.

    About one hour before bed, settle into a simple sequence of calming activities. This might include listening to gentle music or an audiobook, very light stretching only if tolerated, a warm drink (not caffeine), or simply sitting quietly. The key is consistency; the same activities in roughly the same order help your nervous system recognise the pattern.

    Avoid anything stimulating during this window: work tasks, difficult conversations, distressing news, or physically demanding activities. Even seemingly passive activities like watching an intense television drama can activate your stress response. Think “boring and gentle” rather than “engaging and interesting.”

    Make the sleep environment kinder

    Your bedroom environment can either support or sabotage sleep. Small adjustments can make a meaningful difference, particularly when you’re managing pain alongside insomnia.

    Temperature matters more than many people realise. Research suggests 15-19°C is optimal for most people, though fibromyalgia can cause temperature sensitivity in both directions. Aim for neutral, neither too hot nor too cold, with layered bedding you can adjust during the night. Breathable natural fibres help regulate temperature better than synthetic materials.

    Darkness supports melatonin production. Blackout curtains, blinds, or a sleep mask can help if light pollution is an issue. If you need to get up during the night, use dim nightlights rather than bright overhead lights to avoid suppressing melatonin.

    Sound management might mean white noise to mask disruptive sounds, earplugs for noise sensitivity, or simply ensuring your bedroom is as quiet as possible. Whatever approach you choose, consistency helps, as the same sounds (or silence) each night builds a sleep association.

    Bedding for pain deserves careful thought. A mattress that provides pressure relief whilst supporting your spine, pillows appropriate for your sleeping position, and positioning aids like a pillow under the knees for back sleepers can all reduce nighttime pain. Weighted blankets have some evidence for calming the nervous system, though they’re not right for everyone.

    Calm pain and symptoms before bed

    Managing pain before bed can prevent it from keeping you awake or waking you through the night. If you take pain medication, timing it appropriately (with your prescriber’s guidance) so it’s working when you’re trying to sleep makes sense.

    Non-pharmacological options include heat or cold therapy for localised pain, getting into a comfortable position before you settle rather than lying awake shifting, and using relaxation techniques (covered below) that can indirectly reduce pain perception. The goal isn’t eliminating pain for many of us; that’s not realistic, but reducing it enough to let sleep happen.

    Borrowing gently from CBT-I without triggering crashes

    We’ve established that full CBT-I isn’t appropriate when PEM is a factor. But several elements can be safely adapted.

    Cognitive techniques are perhaps the most transferable. Many people with chronic illness develop unhelpful thoughts about sleep: catastrophising about the consequences of a bad night, putting pressure on themselves to fall asleep, or lying awake worrying about symptoms. Working on these thought patterns, perhaps with support from a psychologist familiar with chronic illness, can reduce the mental arousal that keeps us awake.

    Sleep environment optimisation translates directly. Creating positive associations between your bedroom and rest, keeping the room dark and cool, removing distracting electronics, and reserving the bed primarily for sleep and rest (not work or screens) are all compatible with pacing.

    Gentle stimulus control requires significant modification. Rather than getting out of bed and staying active until sleepy, you might simply roll over and rest without pressure, practice breathing exercises whilst lying down, or do a gentle body scan. The goal shifts from “only associate bed with sleep” to “associate bed with rest and calm” recognising that lying quietly has value even without sleep.

    What to avoid: Any fixed schedule that ignores symptom fluctuation. Any instruction to reduce time in bed or push through daytime tiredness.

    For more on how sleep disruption interacts with symptom flares, see our guide to fibromyalgia sleep flares and PEM.

    Any approach that treats rest as something to eliminate. The 2021 NICE ME/CFS guideline is clear that sleep management should be “personalised” and must “take into account the need for rest in the day.”

    If you work with a sleep therapist, explain your condition and PEM clearly. A good practitioner will adapt their approach; one who insists on standard protocols despite your concerns may not be the right fit.

    Nervous-system soothing that respects PEM

    The “tired but wired” state common in fibromyalgia and ME/CFS reflects genuine nervous system dysregulation. Research shows that people with these conditions often have higher sympathetic (stress) activation even during sleep. Calming the nervous system isn’t just about relaxation, it’s about shifting your physiology toward rest.

    Extended exhale breathing is perhaps the most accessible technique. Simply making your out-breath longer than your in-breath activates the parasympathetic (rest and digest) nervous system via the vagus nerve. Try breathing in for 2-4 counts and out for 4-8 counts, whatever feels comfortable. Five minutes of this whilst lying in bed requires minimal energy and can genuinely shift your state. If counting feels effortful, simply focus on a slow, gentle exhale.

    Grounding techniques interrupt anxious thought loops by bringing attention to present moment sensation. The 5-4-3-2-1 technique asks you to notice five things you can see (or remember seeing in your room), four you can feel (the weight of blankets, the pillow beneath your head), three you can hear, two you can smell, and one you can taste. This can be done with eyes closed, entirely from bed, and requires no physical effort.

    A worry pad by the bed gives racing thoughts somewhere to go. When worries surface, jot them down briefly and promise yourself you’ll address them tomorrow. This simple act of externalising concerns can reduce the mental effort of trying to hold onto them and can break the cycle of rumination that keeps the stress response active.

    Self-compassion practice may feel uncomfortable at first, but evidence links self-compassion directly to better sleep. When you notice self-critical thoughts (“Why can’t I just sleep like a normal person?”), try placing a hand on your chest and offering yourself kindness: “This is hard. I’m doing the best I can.” Research shows this kind of supportive self-talk triggers parasympathetic activation and reduces cortisol, the opposite of the stress response that keeps us wired.

    The key with all these techniques is gentleness. If any practice feels like effort or creates frustration, it’s not helping. Start with just one approach, practise it consistently for a few weeks, and add more if it’s working without draining you.

    What about melatonin, magnesium and other sleep aids?

    People with fibromyalgia and ME/CFS often explore supplements and sleep aids, hoping to find something that helps. The evidence is genuinely mixed, and it’s important to approach this area with realistic expectations.

    Melatonin has the most promising evidence for fibromyalgia specifically. Several small studies have found improvements in sleep quality, pain, and quality of life. For ME/CFS, the picture is less clear. A 2021 review found insufficient evidence to recommend it. Some research suggests people with fibromyalgia may have altered melatonin production, which could explain why supplementation helps some people. However, melatonin interacts with numerous medications including anticoagulants, antidepressants, and sedatives, and quality varies between products since supplements aren’t tightly regulated.

    Magnesium has theoretical benefits; it’s involved in muscle relaxation, nervous system function, and sleep regulation, and some studies have found lower levels in people with fibromyalgia. However, the evidence specifically for sleep improvement is limited. Different forms of magnesium have different absorption and effects, and high doses can cause digestive upset. If you’re considering magnesium, discussing it with your GP or pharmacist is sensible, particularly regarding interactions with other medications.

    Other supplements marketed for sleep (valerian, 5-HTP, L-theanine, CBD) have varying and generally weaker evidence. 5-HTP in particular carries significant risks if combined with antidepressants due to the possibility of serotonin syndrome; this combination should be avoided without specialist guidance.

    Pharmaceutical sleep aids require careful consideration. The 2021 NICE guideline for chronic primary pain (NG193) notes that opioids and standard hypnotics are not recommended for fibromyalgia. Low-dose amitriptyline is sometimes prescribed for fibromyalgia with sleep disturbance and may help some people, though it comes with side effects. Any medication decision should be made with your prescriber, considering your full picture.

    The honest summary: no supplement or medication reliably fixes sleep problems in fibromyalgia or ME/CFS. Some people find some things helpful. Many of us are medication sensitive and need to start any new approach at low levels. Nothing replaces the foundations of pacing, environment, and nervous system support, but these additional tools may offer modest benefit for some people when used cautiously.

    When to talk to your GP or specialist

    While this guide offers self-help tools, some situations warrant professional input.

    Consider speaking to your GP if:

    • Your sleep problems persist despite trying these approaches for several weeks
    • You suspect an underlying sleep disorder such as sleep apnoea (loud snoring, gasping awake, excessive daytime sleepiness beyond your usual fatigue)
    • You have symptoms of restless legs syndrome (uncomfortable leg sensations and urge to move, particularly at night)
    • Your sleep difficulties are worsening significantly or affecting your ability to function
    • You’re considering prescription sleep medication or have questions about supplements and interactions
    • You’re experiencing worsening depression or anxiety alongside sleep problems

    Your GP or specialist may offer:

    • Assessment for sleep disorders (potentially including referral for sleep studies)
    • Review of current medications that might be affecting sleep
    • Discussion of medication options appropriate for your conditions
    • Referral to a psychologist experienced in chronic illness for adapted CBT-I
    • Referral to ME/CFS or pain specialist services

    Remember that NICE guidelines emphasise personalised, multimodal approaches. There’s no one-size-fits-all solution, and finding what works often requires patience and professional support.

    Key resources and references

    Disclaimer

    This article provides general information about sleep and chronic illness for educational purposes only. It is not intended as medical advice and should not replace consultation with your GP, specialist, or other qualified healthcare professional. Everyone’s situation is different; what helps one person may not suit another, and some approaches may not be appropriate for your circumstances. Always discuss new supplements or significant changes to your sleep approach with a healthcare provider, particularly if you take other medications or have additional health conditions. If your symptoms are worsening or you’re concerned, please seek professional support.

    Written by Stems From The Gut

    This article was written by someone who lives with fibromyalgia, chronic pain, and gut issues. At Stems From The Gut, we believe in plain-English, evidence-aware information that respects the reality of living with chronic conditions—no toxic positivity, no “just push through” attitudes, and no pretending that simple solutions exist for complex problems. We do our best to align with current clinical guidelines whilst acknowledging their limitations. For more about our approach, see our Authors & Medical Stance page.

  • Fibromyalgia body clock

    Fibromyalgia body clock

    If you live with fibromyalgia, it can feel as though your body clock has a mind of its own. Many people talk about a “fibromyalgia body clock” that runs on a completely different timetable to everyone else. Not very helpful when your body seems to be running on a completely different timetable to everyone else.

    This is not another generic list of sleep tips. Instead, we are zooming in on your body clock, your circadian rhythm, and looking at how timing (when you sleep, wake, move and see light) can gently support pain, fatigue and brain fog alongside everything else you are already doing. We will also be honest about what the research actually shows, and where we are still making educated guesses.

    What you will take away from this

    Fibromyalgia seems to mess with the body clock in ways that matter. When your sleep and wake rhythms get disturbed, pain, fatigue and mood often spiral. The strongest signal from the research is not about magic gadgets or expensive supplements; it is about regularity. When you wake up and the difference between your daytime and nighttime patterns seems to matter more than chasing perfect sleep.

    Tools like CBT-I (cognitive behavioural therapy for insomnia), morning light and low dose melatonin can help some people feel more in control, but they sit alongside everything else. They are adjuncts, not cures.

    If you also have ME/CFS or clear post exertional malaise, pacing and energy envelope management stay front and centre. Any timing tweaks need to work around that reality, not override it.

    Here is the reassuring bit: you do not need perfect routines. Tiny, sustainable shifts in timing can still make a difference when you are working with what your body can actually manage right now.

    Meet your body clock (and why it matters for fibro)

    Deep inside your brain, in a tiny cluster of cells in the hypothalamus, sits your master clock. It keeps roughly twenty four hour time, responds to light (especially in the morning), and helps coordinate hormones like cortisol and melatonin. It also influences body temperature, gut motility, immune signalling and even how you process pain.

    Most people’s internal clocks naturally run a touch later than twenty four hours. Without something to anchor them, they gradually drift later and later. For many of us, that anchor is morning light plus a fairly consistent wake up time.

    In fibromyalgia and related pain conditions, several studies have noticed a familiar pattern. People are more likely to prefer evenings, describe themselves as “night owls”, show bigger day to day swings in when they fall asleep and wake up, and have altered rhythms of melatonin and cortisol. That does not prove cause and effect, but it fits what many people with fibromyalgia describe: days and nights gradually sliding out of sync, pain and fatigue flaring when sleep becomes chaotic.

    What research actually says about the fibromyalgia body clock

    The evidence base is still small, but a few themes are emerging that can help us make better informed guesses.

    Morning light and a fixed wake time

    In one four week trial, people with fibromyalgia were divided into two groups. One group had bright morning light therapy, the other dimmer light. Both groups were also given a stable wake up time and some simple advice about bedtime.

    Both groups improved. Pain, mood, day to day function and sleep quality all got better, and the bright light group did not clearly outperform the dim light group. The researchers concluded that regular sleep and wake timing was probably doing most of the heavy lifting, rather than the intensity of the light itself.

    Melatonin: modest help, not a miracle

    Some older trials in fibromyalgia, and newer work in mixed chronic pain groups, suggest melatonin can modestly improve sleep quality and slightly reduce pain scores for some people, especially over the first few weeks. The effects often fade after about six weeks, though. Doses and formulations vary wildly from study to study – anywhere from one to ten milligrams, immediate release or slow release. We still do not have clear long term safety data or a single “best” dose.

    There is also one small trial in ME/CFS that used one milligram of melatonin plus zinc over sixteen weeks and found improvements in fatigue and quality of life. Promising, but not yet replicated.

    Melatonin is not suitable for everyone, particularly if you take several other medicines or live with epilepsy, bipolar disorder or more complex health conditions. It can cause morning grogginess, vivid dreams and, less commonly, mood changes. In the UK it is usually prescription only, which is another reason to talk it through with your GP or pain clinic first rather than experimenting on your own.

    CBT-I for insomnia

    For people with fibromyalgia who also have clear insomnia, CBT-I – a structured talking therapy focused on sleep patterns, thoughts and behaviours around sleep tends to outperform generic “sleep hygiene” advice. It also does better than standard CBT for pain when the main target is broken sleep.

    Improvements in pain and mood tend to be smaller than the sleep gains, but they can still be meaningful for some people.

    NICE does not currently recommend melatonin or light boxes specifically for fibromyalgia because the evidence is limited. Instead, guidance leans towards multimodal care: pacing, gentle movement within limits, psychological support where appropriate, and CBT-I for those with true insomnia.

    The big idea: give your body clock a daily anchor

    The most realistic change most of us can make is not fancy or expensive. It is about giving your fibromyalgia body clock a few consistent time signals every day, so it knows what counts as day and what counts as night.

    Those anchors might be getting up at roughly the same time most days, seeing natural light not too long after waking, keeping most of your eating, movement and social contact in the daytime, and making your evenings visibly and sensibly “quieter” with softer light and less stimulation.

    You do not need to hit all of these. Even one or two clear anchors, done gently and consistently, can start nudging your system in a kinder direction.

    Step 1: Choose a realistic wake up window

    For many people with fibromyalgia, especially those without post exertional malaise, the single most powerful shift is choosing a regular wake up time and sticking to it on most days.

    If your current pattern is all over the place, it is usually unhelpful to suddenly decide you will get up at seven every morning. Instead, look back over the last week and notice when you naturally wake if nobody is forcing you. Use that as your starting point. If you tend to wake somewhere around half past eight or nine, choose a half hour window in that range and aim to be out of bed within that window on most days.

    If you also live with ME/CFS or clear post exertional crashes, your anchor might need to be softer and later. The aim is gentle regularity, not dragging yourself out of bed in the middle of a crash just to “protect your rhythm”. You can always experiment with edging your window earlier by fifteen or thirty minutes once things feel more stable.

    Step 2: Use light as your “on switch” gently

    Light is the main signal for your master clock, but you do not need specialist equipment to begin with. If you can, open the curtains soon after you wake and spend ten to twenty minutes near a window with a drink. On better days you might manage to step outside, even if it is just onto a balcony or front step.

    If mornings are your worst time and you tend to wake very late, start from where you are rather than where you think you “should” be. If you usually first see daylight at one in the afternoon, aim to see it at half twelve for a week, then experiment with shifting that earlier in small steps – only if your body tolerates it.

    Some people use a bright light box, particularly in winter. These can be helpful in conditions like seasonal affective disorder. In fibromyalgia, though, the best evidence so far suggests that having a regular morning light routine mattered more than hitting a particular brightness. You can treat any gadget as a possible helper, not a cure.

    If you have a history of bipolar disorder, significant eye disease or you take medicines that make your skin or eyes more sensitive to light, speak to your doctor before using a light box.

    Step 3: Create quiet cues for “night mode”

    Evenings are about giving your brain clear signals that it is time to wind down. This does not require a long complicated routine, it is more about drawing a line between “day” and “evening”.

    That might look like switching from the main ceiling lights to lamps about an hour before bed, choosing lower stimulus activities such as an audiobook, podcast, familiar television or a paper book instead of fast scrolling, and keeping your largest meals earlier in the evening so you are not trying to sleep on a very full stomach.

    Some people with insomnia find blue blocking glasses helpful for a couple of hours before bed, especially if they use screens a lot. Most of the research for these is in general insomnia rather than fibromyalgia specifically, but they are relatively low risk and not usually expensive if you want to try them. Using the night mode or warm colour settings on your phone, tablet or laptop is a simple, free step in the same direction.

    If you already have a basic wind down routine, you do not need to add lots of extra steps. The main thing is that your brain can tell, most nights, when day has ended and night has begun.

    What about melatonin, light boxes and other circadian “hacks”?

    For adults, small doses of melatonin, often in the one to three milligram range, can shift the body clock slightly earlier if taken at the right time, usually one to two hours before your intended bedtime. In some fibromyalgia and chronic pain studies, this has led to better sleep and modest reductions in pain in the short term.

    At the same time, it is not a cure for fibromyalgia, and it is not right for everyone. It can cause grogginess, vivid dreams and occasionally changes in mood, and it can interact with other medicines. Because melatonin is prescription only for adults in the UK, it is best thought of as something to explore with your GP or pain team as a time limited trial, not something you put yourself on indefinitely.

    Bright light therapy boxes sit in a similar category. They can be helpful in certain circadian rhythm disorders and seasonal affective disorder, but in fibromyalgia the clearest message so far is that a regular morning routine matters more than a particular lux number. For people with ME/CFS we do not yet have strong evidence that bright light therapy improves post exertional symptoms or core fatigue, and it is not a specific NICE recommendation. If you do experiment, it is wise to start gently and keep an eye on boom and bust patterns, where a brief improvement leads to a big uptick in activity and then a crash.

    Blue blocking glasses and software night modes fall into the “low risk helper” category. They can make it easier for some people to fall asleep and stay asleep, especially in our very screen heavy evenings, but they are unlikely to transform fibromyalgia on their own.

    If you live with PEM or ME/CFS as well as fibro

    Many people reading this sit somewhere on a fibromyalgia ME/CFS Long Covid overlap. You might recognise delayed crashes after effort, have very limited energy to spare, or face days when getting out of bed at all feels like climbing a mountain.

    In that context, pacing and energy envelope management remain non negotiable. Any body clock work needs to be gentle enough that it does not trigger post exertional malaise. It is completely fine if your wake window is later than average, if it has to flex on crash days, or if family, caring roles or appointments mean your timing is far from textbook.

    A useful way to picture this is to imagine body clock work as sandpaper rather than a hammer. You are smoothing out a few rough edges, not remodelling the whole structure. If any suggestion in this article feels as though it would tip you into a crash, it is simply not the right step for you at the moment.

    Making this doable when you are already exhausted

    When you are dealing with chronic pain, fatigue and brain fog, even small changes can feel like a lot. It helps to treat this as a series of tiny experiments rather than a big lifestyle overhaul.

    You might begin with one simple anchor, such as opening the curtains within fifteen minutes of waking most days, or sitting in your usual spot by a window with a drink for ten minutes. Set a reminder on your phone, or leave a note where you will see it, so you do not have to hold it in your head.

    On more difficult days, the only realistic goal might be to keep today’s wake time within an hour of yesterday’s, if that is possible. If you share a home, you could ask a partner, family member or housemate to help with easy cues, opening the curtains or switching to lamps in the evening at an agreed time.

    If a week or two goes off track, that is not failure. It is simply information about what your body and life are like at the moment. You can always restart from where you are, not where you were.

    When to talk to your GP or specialist

    Self help changes can be useful, but they are not a substitute for proper assessment. It is worth speaking to your GP or specialist if you have had very little sleep for months despite trying basic changes, if someone has noticed loud snoring, gasping or pauses in your breathing at night, if you wake unrefreshed with morning headaches, or if your mood has dropped very low or you are having thoughts of self harm.

    It is also sensible to get medical advice before using melatonin or bright light therapy if you have a history of bipolar disorder or psychosis, or if you are already taking several medicines that make you drowsy.

    In that appointment, you can ask about referral options for services that offer CBT-I, whether melatonin might have a role in your specific case, and whether any of your current medicines might be making your body clock later or your sleep worse.

    Next read: Pain and crashes fit together; have a look at our guide to fibromyalgia and sleep.

    Key resources and references

    If you would like to read more or share information with your GP, these are good starting points:

    NICE guideline NG193 on chronic primary pain in over sixteens, which includes fibromyalgia.

    The Royal College of Physicians guidance on diagnosing fibromyalgia.

    The Burgess trial on morning light and stabilising sleep and wake timing in fibromyalgia.

    The DREAM-CP trial led by Galley and colleagues, looking at modified release melatonin in severe chronic pain.

    Recent reviews of CBT-I in people who have both fibromyalgia and insomnia.

    Disclaimer

    This article offers general information about fibromyalgia, sleep and circadian rhythms. It is not a substitute for individual medical advice. If you are experiencing chronic pain, fatigue or other worrying symptoms, please speak with your GP or a relevant specialist. Everyone’s situation is different, and what helps one person may not be right for another.

    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 how we use evidence on the Authors and Medical Stance page.

  • Fibromyalgia Sleep and Flares: How Bad Nights Turn Up Pain and PEM

    Fibromyalgia Sleep and Flares: How Bad Nights Turn Up Pain and PEM

    You know the pattern if fibromyalgia sleep flares are part of your life. A night spent tossing and turning, staring at the ceiling, or waking every hour. Then morning arrives, and with it comes pain that feels sharper, brain fog that is thicker, and a flu like exhaustion that sits heavy in your bones. It is not your imagination, and it is not weakness. There is a real, measurable connection between broken sleep and the worsening of fibromyalgia symptoms.

    This post builds on an earlier piece about why sleep itself feels so disrupted when you have fibromyalgia. Here, we’re looking at fibromyalgia sleep flares, what happens after a bad night, why pain and fatigue spike, how this connects to post-exertional symptom worsening, and what you can do to navigate the next day without making things worse.

    The reassuring news is that you are not imagining the link between rough nights and rough days. Research shows that poor sleep leaves the nervous system more sensitive to pain, and for people with ME or CFS or Long COVID overlap, inadequate rest can be one of the triggers that tips you into post exertional malaise. Understanding this cycle can help you approach bad nights with self compassion rather than self blame.

    Why a Bad Night Can Make Fibromyalgia Sleep Flares Worse

    When you do not get enough good quality sleep, especially deep, restorative sleep, your nervous system does not get the chance to reset properly. Think of it like a smoke alarm that has become too sensitive. It starts going off at the smallest whiff of toast, not because there is a real fire, but because its threshold has been turned down too low. That is essentially what happens with pain processing when sleep is disrupted.

    In fibromyalgia, this is part of something called nociplastic pain or central sensitisation. Your nervous system has become over protective, and it amplifies pain signals that might feel mild or even go unnoticed in someone without chronic pain. It is not all in your head. It is your alarm system working overtime, trying to keep you safe but actually causing more distress. Poor sleep makes this hypersensitivity worse, because sleep is when the nervous system usually does its housekeeping and turns down the volume on threat detection.

    The good news is that a few bad nights usually cause a temporary spike in symptoms, not a permanent worsening. Your pain threshold might drop for a day or two, making everything feel more intense, but this does not mean you have lost ground forever. Your body is responding to a stressor, in this case lack of sleep, and once you get a bit more rest, things often settle back towards your baseline. It is uncomfortable and exhausting, but it is not a sign that you are failing or that your condition is spiralling out of control.

    Sleep, Flares and PEM or PESE: When Exhaustion Becomes a Crash

    In fibromyalgia, people often talk about flares. These are periods when pain, fatigue, brain fog and other symptoms ramp up significantly and stick around for days or even weeks. They are not random. They are usually triggered by something, whether that is physical over exertion, emotional stress, illness, or broken sleep. A flare can feel like your body has suddenly turned the difficulty dial right up on everything.

    For people who also have ME or CFS or Long COVID, there is an additional layer called post exertional malaise, also called post exertional symptom exacerbation. This is when symptoms get noticeably worse after doing too much. It is not just feeling tired in the moment, but experiencing a delayed crash that can last for days. Too much does not only mean exercise. It can include mental effort, emotional stress, travel, or simply not getting enough sleep for several nights in a row.

    This is where it gets tricky. Broken sleep can act as one of several stressors that push you over the edge into a flare or a PEM episode. Imagine your energy and symptom tolerance as a budget. You might cope reasonably well with one stressor, such as a bad night, or a busy day, or an argument with a friend. When two or three pile up, you hit your limit. A fibromyalgia sleep flare up followed by trying to keep up with your normal routine can be the combination that tips you into a crash.

    It is important to understand that taking care of your sleep is one supportive pillar among others. Pacing, managing stress and supporting your nervous system are also important, but sleep on its own is not a cure. Improving your sleep will not make fibromyalgia or PEM disappear, but it can help reduce the frequency and intensity of flares by keeping one major stressor more under control.

    Planning for After a Bad Night: Pacing, Not Punishment

    After a terrible night, the instinct is often to push through. You feel as if you have lost time, so you need to catch up. There is a to do list staring at you, responsibilities that will not wait, and a nagging voice saying you should be able to manage if you just try harder. But here is the truth. Pushing through after a bad night is one of the quickest ways to trigger a worse flare. Your body is already running on empty, and asking it to perform at full capacity is like trying to sprint on a sprained ankle.

    A more sustainable approach is to think of your days using a simple traffic light system.

    On red days, when you have had a very bad night and feel dreadful, you go into a gentler mode. This means fewer tasks, more rest breaks, and letting go of anything that is not essential. It is not giving up. It is strategic energy management.

    On amber days, when you have had an ok night and feel wobbly but functional, you keep the essentials but drop the non essentials and add extra breaks throughout the day.

    On green days, when you have had a better night, you can consider doing a little bit more, but still within your limits. It is not about making up for lost time.

    Scaling down your plans after a bad night is not laziness or failure. It is wise self management. You are working with your body rather than against it, and that gives you the best chance of avoiding a full flare or a PEM crash. The goal is not perfection. It is to avoid the boom and bust cycle where you overdo it, crash hard, recover a little, then overdo it again.

    Tiny Tweaks That Help You Survive the Day After

    You do not need a long list of complicated strategies to get through the day after a bad night. Pick one or two small adjustments that feel realistic for your life, and be gentle with yourself. Perfection is not the goal. The aim is to get through the day without making things worse.

    If you wake up feeling wired and exhausted, a quieter, lower stimulation morning can help. This might mean softer lighting, less noise and simpler tasks that do not demand much decision making. Your nervous system is already overwhelmed, so you do not need to add more demand first thing.

    Gentle movement or stretching can help if it feels tolerable, with the emphasis on gentle. This is not about making up for lost time or forcing yourself through a workout. It is about moving in a way that feels supportive, such as a slow walk around the house or some careful stretches in bed. If movement makes you feel worse, rest is absolutely fine too.

    Steady meals and snacks can make a real difference. When you are exhausted, it is tempting to skip meals or survive on sugar and caffeine, but this can leave you even more shaky and foggy. Easy, nourishing food, nothing fancy, can help stabilise your energy without adding to your load.

    It also helps to think realistically about naps. For some people, a short nap earlier in the day, perhaps twenty to thirty minutes before mid afternoon, can take the edge off without ruining night time sleep. For others, naps make falling asleep at night harder. If naps do not work for you, quiet rest or just lying down with your eyes closed can still give your body some recovery time. There is no single right way here. It is about noticing what your body responds to.

    Protecting Future Nights Without Perfectionism

    The goal here is not perfect sleep every single night. That is not realistic for anyone, especially for people living with fibromyalgia or ME or CFS. The aim is to gently shift the odds in your favour, so you have fewer bad nights and the bad nights you do have feel a little less intense.

    Gentle and realistic sleep protecting habits can help. A wind down routine that does not require lots of energy, perhaps dimming lights, putting your phone away and doing something calm, can signal to your nervous system that it is time to move towards rest. Roughly regular bedtimes and wake times, when life allows, can help stabilise your body clock. The key word is roughly. It has to be flexible enough to allow for the realities of chronic illness.

    What does not help is self criticism. Telling yourself that you have failed at sleep only adds stress to a nervous system that is already overloaded. You are doing your best in difficult circumstances, and some nights will simply be rough whatever you do. That is not your fault. The kinder you can be to yourself about sleep, acknowledging that it is hard, that you are trying, and that progress is not linear, the less emotional stress you add to the physical challenge.

    When to Talk to a Doctor About Your Sleep

    Having fibromyalgia, ME or CFS or Long COVID does not protect you from other sleep disorders, and sometimes what feels like typical fibromyalgia sleep may have an additional, treatable cause. It is worth speaking to a GP or sleep specialist if you notice certain signs.

    Very loud snoring, choking sounds, gasping for air, or long pauses in breathing during sleep can be signs of sleep apnoea, which is surprisingly common and can be treated. Uncomfortable sensations in your legs, such as crawling, tingling or an urge to move, or kicking during sleep, might point to restless legs syndrome or periodic limb movement disorder. Both have treatment options.

    If you are experiencing very low mood, high anxiety or any thoughts of self harm, it is vital to reach out for support. Chronic sleep deprivation can worsen mental health, and you deserve help to navigate that.

    Taking a short symptom diary, even just a few days, can make medical appointments more productive. Note when you go to bed, when you wake, how many times you wake during the night, and how you feel the next day. It does not need to be complicated. Rough notes on your phone are absolutely fine.

    You Are Not Lazy: It Is a Real, Rough Cycle

    Needing a quieter day after terrible sleep is not a character flaw. It is a sign that your body is working incredibly hard to manage a complex and exhausting condition. You are not lazy for resting after a bad night. You are being sensible. You are not weak for struggling with pain and fog when you are sleep deprived. You are human, and your nervous system is behaving in exactly the way science says it will in these circumstances.

    The key idea to take away is this. Bad nights can turn up pain and worsen post exertional symptoms, but you are not powerless. Pacing, tiny adjustments and self compassion can soften the impact over time. You will not eliminate bad nights altogether, and you will not always get it right. But every time you choose to scale back after a rough night instead of pushing through, you are breaking the boom and bust cycle a little more.

    If you would like to explore more about fibromyalgia and sleep, or dive deeper into pacing and energy management, there are other posts on this site that may help. Take what is useful, leave what is not, and remember that you are doing better than you think.

    Next read: What is fibromyalgia? (And what it isn’t)

    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.