Melanie Lampro

I carry this invisible weight; on the outside, I might look fine, but the view from the inside out tells a very different story.

The diagnosis was delivered more than a decade ago, though the signs came earlier. At first it felt like random bruises but with no marks, a draining ache that came and went like a mean shadow, or a rawness on my skin with no rash to explain it. Eventually, the word fibromyalgia gave me a frame to understand it, but it didn’t make it easier to live with.

This blog follows the same rhythm as Flareability, the free colouring book and self-help guide I created alongside it. It isn’t a manual, and it isn’t about perfection. It’s a set of reflections, reminders, and small truths from someone who has been there. A space to say: you’re not alone.

The spark for writing this came from a simple question someone asked me on X.

Have you got any tips on how to manage it, or is it very much an individual thing? I have a friend dealing with it and is trying medication, but it seems very much trial and error for her.

Our resulting exchange made me pause. I’ve mentioned my fibro a lot in passing over the years, but never really tackled it head-on. This blog is me doing that.

If you want a ‘quick read’ version of this blog, head over to my ‘The Skinny’ series.

First Diagnosis and the Rest That Followed

My first diagnosis wasn’t fibromyalgia. It was anxiety and depression. That came long before. Then irritable bowel syndrome (IBS) joined in, and finally fibro. The three prod each other along. Antidepressants are sometimes prescribed for pain, sleep, and headaches too, so maybe they help in the background.

I’ve also lived with dyslexia (reading and writing differences) and dyscalculia (number and maths differences) for as long as I can remember. Synaesthesia (cross-wired senses) colours things further. And then cancer decided to crash the party at one point; that was a riot. Some of these conditions overlap. Some clash. They work against and despite each other, but rarely in synch. Together they make up the strange schematic of how my brain and body work.

What a Flare Feels Like (For Me)

A flare is different from the everyday pain. It ramps everything up.

My ‘normal’ begins with the mystery of my malfunctioning joints. Mornings seem to be the absolute worst for this. Sometimes I’m cornered into a cramp for up to twenty minutes, knees and elbows locked in agonising pain, unable to move.

By this point, Restless Legs Syndrome and paraesthesia (odd skin sensations such as tingling, prickling, or crawling) have usually kept me awake half the night. The persistent niggling in the small of my back has been with me since childhood but deemed imaginary. For years it was further written off as hallucinations, a known side-effect of some antidepressants, especially when one type convinced me I had ants crawling across my forearms. Now I know its name, but knowing doesn’t make it easier to live with.

Temple tenderness adds another layer. It isn’t a headache. It’s a burning, stretched sensation, as if my brain is exposed and raw. Sometimes it feels like my skull itself is fragile, as if my fingers might push straight through. Wild, I know, but that’s the reality of it. Even sound hurts. Yes, you read that right: sound hurts. Horrific in any case; impossible when you’re a musician.

I used to experience debilitating migraines (I don’t any more, but that’s another story), and the remembered pain of those, with the accompanying sound intolerances, is very similar to my fibro experiences.

Eating and drinking can be uncomfortable too. Sometimes my fingers spasm so hard I have to prise them off a cup with the other hand. Other times my hands shake, spilling drinks before I can even get them to my mouth. I also get jaw clicking, especially when chewing. Interestingly, my son (who has Crohn’s disease, not fibro) also has this, though his is more extreme. I’ve often wondered if his symptoms overlap with fibro, because there are known links between fibro, Crohn’s, and temporomandibular disorders.

Not that either one of us really wants to add yet another diagnosis to the list…

Because chewing can set off temple and jaw pain, I sometimes rely on softer foods (yoghurt, porridge, or ice-cream), especially on flare days. Other times, when the pain is more manageable, I’ll indulge my love of chewy textures. It’s always a balance between what I want and what my body allows. On those days, my pudding habit works in my favour.

And then there’s the exhaustion. It isn’t tiredness. It’s bone- and brain-deep, a hollowing-out that leaves me unable to think straight or form sentences. I can’t get comfortable.

The flares are when everything amplifies, and even the subtlest of stimuli set the imaginary Flare-O-Meter dancing. Even the brush of a hand or a breath on my skin feels unbearable. I can’t be close to people at all, it’s agony. For a naturally affectionate person who deals in hugs aplenty, this is torture. It’s like the worst flu you ever had (times ten) whilst simultaneously being crushed under a small elephant.

A flare doesn’t just drain me. It flays me alive.

Finding Ways Through

To manage symptoms, I reach for simple remedies: a hot pad from the microwave, a warm shower if my skin isn’t playing up, gentle stretching, or pressing on sore points. It’s a bit like wobbling a loose tooth when you were a kid; it hurts, but strangely soothes too.

Cooling balms, aromatherapy oils, CBD balm, or Epsom salts all help take the edge off. They don’t cure anything, but they matter.

And when my thoughts tangle or my hands won’t cooperate, I lean on AI. I’ve written more about fibro fog elsewhere, but in short: it’s been a lifeline, saving me hours of typing and helping me keep creating, even on the hardest days. On low-spoon days I keep things simple: overnight oats instead of cooking, paper plates when the sink feels like Everest, gum when tooth care is too much. These aren’t forever fixes, just bridges. I’m mindful some options are disposable, which isn’t as green as I’d like, but sometimes it’s the compromise that gets me through.

Bodies are messy. I tend towards dehydration, so I have to remind myself to drink a lot, then I’m back and forth to the bathroom like a yo-yo, which isn’t ideal with a body that moves like a B-movie zombie on a good day and a pelvic floor that’s only just hanging on to life itself. I’m folding gentle pelvic-floor work into my morning routine, tucked between stretches and that odd ‘fizzing body’ check-in, in the hope that I can remedy this before a trip to the loo becomes more like a twisted escape-room puzzle.

Speaking of… the bathroom in my new home wasn’t really up to scratch when I moved in. No shower, just a bath I’d been strongly advised not to climb into by an occupational therapist (OT) after a couple of tumbles at the previous house. At first I had to rely on one of those rubber sprays that fit over the sink taps (there wasn’t even hot water to the bath). Eventually this was fixed and a basic mixer shower fitted. I added a bath board and a shower stool, plus an extra suction bracket lower down on the wall so I can adjust the shower head.

But the bathroom itself is tiny, built before showers were standard, and the walls aren’t fully tiled. Every rinse damages the paint. A wet room would make far more sense (I dream of a wet room), but for now I make do. The lower shower-head bracket lets me set the water before I step under, and the stool means I can sit through the stingy bits and stand only if I feel steady.

This isn’t complaining; it’s simply an honest observation of the little fixes I’ve found to get by. These small hacks aren’t just for me, they’re the kind of tips I share when friends ask how to support me or someone else, or even help themselves have an easier time of it. Sometimes it really is the simplest adjustments that make a day more bearable.

Clothes and Comfort

I’ve been asked more than once if I “ever wear anything else”, because people notice when I turn up in the same outfit often. One time, I overheard someone mocking another person for wearing almost identical clothes every day, and for a second I felt embarrassed, because that could just as easily have been me they were talking about. I briefly let their judgement in and it was grim.

But here’s the truth: I do wear almost the same clothes every day. That’s because I know what feels comfortable. If something works, I’ll buy several of the same set so I always have clean clothes, even on days when I can’t face the laundry. If I want to change it up, I’ll accessorise. This isn’t laziness or lack of imagination. It’s survival.

Fitness at My Own Pace

People sometimes say, “You’re just unfit.” Yes, I am. But I wasn’t always, and the pain was there even when I was fitter. That said, movement definitely helps, and I’d encourage anyone who can to keep active. Walking and swimming are brilliant options. Since I’m not exactly in a position to build an Olympic-sized heated pool in the back garden, I’m currently debating a walking pad instead… though that decision isn’t going smoothly either.

What I can do now matters more than what I could do ten or twenty years ago and I won’t be giving in, I just need to make adjustments.

It’s easy for others to assume I should be able to do more. I used to go to the gym three days a week, but that’s no longer practical. Now I build movement in differently: gentle stretching, short walks, small goals. Have I made progress? Yes. Have I ever slipped back into bad habits? Definitely. The difference now is I don’t beat myself up about it. Fibro does that plenty for me.

One day I’d love to work with a trainer again, even gently, but for now it’s stretch, rest, walk, rest, small wins.

Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’

Mary Anne Radmacher

The Crash After ‘Normal’

That’s the part no one sees: the collapse after dipping a toe into the mundane that most people don’t give a second thought to. I might tackle my overgrown front garden one day, proud of myself for managing it. But the next ten days could be lost to pain, exhaustion, and recovery.

Pacing is everything, but it’s a constant balancing act. Too much, and I crash. Too little, and I stiffen up. There’s no perfect rhythm. Just trial, error, and acceptance.

I pace social activities, too. I barely drink alcohol or caffeine now. It’s tempting because they dull pain and increase energy, but the payback is brutal. So going for an espresso is a rare treat and a night out with friends even rarer, when I do venture into the big wide world, I have already planned my exit route and I don’t beat myself up for leaving early. Gigs are always the hardest. I want to support every band on the bill, but sometimes I have to accept that I cannot. That crushes me every single time.

Fog and Finding Words

Fibro fog (confused thinking and poor memory linked with fibromyalgia) tangles me up. Some days I lose a simple word like ‘door’ for ten minutes. Dyslexia joins in, twisting spelling and order. Add in aching hands that resist typing, and it could easily be enough to silence me.

That’s where AI steps in, as my most recent unofficial personal assistant. It isn’t about replacing my voice; it’s about giving me a way to use it. I can spill out jumbled notes, half-formed sentences, or even just a list of words, and AI helps shape them into something readable. Somehow it understands my odd spelling, my muddled hints, and deciphers them with uncanny accuracy.

Before fibro worsened, I used to write, draw, and paint prolifically. Creative expression has always been part of who I am. But pain in my hands and body made it harder to physically do these things without discomfort. Typing for long stretches is tough, and even holding a paintbrush can feel like a battle.

Now, AI is a lifeline. Typing short prompts or speaking thoughts into a computer saves me hours of painful keyboard time. It means I can still create, still share stories, ideas, and art, without pushing my body past its limits.

AI is not a substitute for my voice, it’s a way for me to keep using it.

Self-Care That Fits

I use aromatherapy as a scented signal that it’s time to settle. Lavender and petitgrain work well for me, but chamomile, clary sage, or even a touch of cedarwood can make a calming blend too. Nights are tricky, so I keep a few rules: don’t stay up late (not always easy when your alter-ego plays in a rock band), and don’t eat late.

Bedtime stories on Insight Timer help (it’s OK, they have grown-up tales if you don’t fancy Little Red Riding Hood, but I like the fairy tales so I often pick them). If it’s 5am and sleep still won’t come, I make tea, open a window, and listen to the birds. Rest counts, even when sleep doesn’t. And yes, my dog usually ends up tucked under my arm.

A cosy snooze around 2pm saves me later. A small thermos by the bed spares me from getting up when everything protests. Little things add up.

Creativity isn’t a luxury, it’s how I cope. Music, writing, sketching; they keep me grounded. Walks when I can, bandmates and friends reminding me I’m still more than my conditions, and a dog who never leaves my side.

Randomly overheating is its own battle. Hot weather makes it worse. A cooling balm takes the edge off, but sometimes the simplest things help most. I love an old-fashioned hand fan. Cold flannels in the fridge, a spray bottle with water, or keeping the blinds down in the heat. Small hacks, but they keep me going.

Teeth, Scalp and Skin

Tooth care got harder after chemo. Bleeding gums, lost teeth, the lot. Chemo also accelerated dental problems that were already made harder to manage with fibro fatigue. It left me juggling not only sensitive gums but the sheer energy cost of keeping on top of dental routines.

Most days it’s an electric brush, gum-health toothpaste, water-flosser, interdental brushes, and a gentle mouthwash. On the worst days I switch to a softer brushing option and keep gum and mouthwash handy.

Jaw clicking and scalp sensitivity are part of my fibro, too. I’ve already written about temple pain earlier, but here’s how it plays out in everyday care: brushing my teeth, washing my hair, even pinning it back can turn into painful tasks. Holding my arms up is exhausting, so I often sit on my shower stool when I wash my hair, and on bad days I’ll use a soft band just to keep my hair off my face.

Face washing has its quirks as well, I can’t bear water running down my arms at the sink, so I use a cleansing balm or cream and wipe it away with a muslin cloth or flannel, depending on what my skin can handle.

Work & Finding My Own Path

Holding down a regular 9-5 job just isn’t possible for me. I tried, but I couldn’t be the reliable, always-on employee that companies expect. Even in workplaces with flexi hours and diversity support, the reality is that frequent absence doesn’t make me an attractive hire. No shade, it just is what it is.

Part of the problem is that fibro and other ‘invisible’ conditions don’t fit neatly into the way many workplaces still run. Chronic pain doesn’t clock in and out on a schedule. One day you might be fine, the next you’re floored, and employers often see that unpredictability as unreliability. The law here in the UK (the Equality Act 2010) says disabled people shouldn’t face discrimination, but in reality, bias can be subtle. A patchy sickness record, or even just mentioning health conditions in an interview, can close doors.

Even when ‘reasonable adjustments’ are on the table, it depends on what an employer thinks is reasonable. For some, that might mean home working or flexible hours. For others, it’s a flat no. And because pain is invisible, there’s always that shadow of doubt; if you look fine, you must be fine. That’s an extra weight to carry, on top of the condition itself.

That’s why I turned to working for myself from home. Freelance and contract work wasn’t new to me, but fibro made me realise I needed that flexibility permanently. My journey with TEMPLESPA started back when I was still able to deliver in-person classes. Gradually I needed more support to do that and eventually I shifted almost exclusively to working online because it was more practical for me. Even so, I’ve had to cut back, stepping away from Pinterest, Instagram, WhatsApp, Facebook, and TikTok for now. Instead, I keep things manageable by focusing on X, email, and phone/text.

The same goes for my music. I can still attend rehearsals, play gigs, and record in the studio with Braver than Fiction, but it takes careful management. I’m lucky to have the best bandmates who look out for me and make sure I’m OK.

Fibro may limit how and when I can work, but it hasn’t stopped me from finding ways to contribute, create, and stay connected.

Reflection for readers
If you’re newly diagnosed and struggling with work, know that you’re not alone. Many of us find that the traditional 9-5 simply doesn’t fit our health any more. That doesn’t mean you’re without purpose; it just means finding paths that play to your strengths and wellbeing. Whether it’s flexible work, freelancing, creative projects, or building something of your own, there are ways to adapt.

Sometimes the answer isn’t about pushing harder, but about reshaping work to fit the life your body allows.

For me, the biggest shift was learning that it’s not about ‘pushing through’ (that only made things worse). Instead, I’ve had to pace myself, accept my limits, and be kinder to myself. Work is still possible, but it looks different now. And that’s OK.

In the UK, fibromyalgia is recognised by the Department for Work and Pensions (DWP) as a potentially disabling condition. Many people apply for Personal Independence Payment (PIP), with around 62% of claims succeeding. The process isn’t easy (it can be lengthy and complicated), but it does acknowledge fibro as a genuine and serious condition. Importantly, PIP isn’t an unemployment benefit; it can be paid to people in work as well as those who aren’t.

Being Seen

One that still stings: I asked to use a disabled bathroom in a shopping centre. It wasn’t accessible with my Radar key and I needed to request access at customer services. The staff member looked me up and down and said, “You don’t look disabled.”

No words.

A Shared Voice

It may not sound dramatic, but every adaptation is a form of resilience. I’m probably not saying anything that hasn’t been said before. That’s fine. I’m here to help amplify the collective voice, to add one more story to the many already shared.

Rest is not idleness, and to lie sometimes on the grass under trees on a summer’s day, listening to the murmur of the water, or watching the clouds float across the sky, is by no means a waste of time.

John Lubbock

Flareability isn’t about answers. It’s about honesty. If you’ve read this far, I hope you feel seen. And I hope you know: you’re not alone.

A Hashtag Calendar of Fibro-Related Observances

Hashtags and awareness days often launch locally before going global, thanks to social media’s reach. They build supportive communities, boost visibility, and encourage solidarity online. If you want to support awareness around fibro and chronic pain, here are some dates to know:

True Global Fibromyalgia & Invisible Illness Awareness Days

1. May is Fibromyalgia Awareness Month
   • Founded: Evolved from the specific May 12th awareness day, it’s not tied to a single founder. The concept of a month-long observance was globally adopted to expand on the day’s original purpose
   • Purpose: Raise public understanding of fibromyalgia, reduce stigma, and encourage education and support for those affected. It is a month-long observance of the challenges of the condition, complementing the more specific awareness days
   • Hashtag: #FibromyalgiaAwarenessMonth
2. National Fibromyalgia Awareness Day (May 12th)
   • Founded: 1998, USA, by the National Fibromyalgia Association
   • Purpose: Highlight fibromyalgia, promote education, and support research
   • Hashtag: #NationalFibromyalgiaAwarenessDay
3. International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) (May 12th)
   • Established: 1992, chosen to align with Florence Nightingale’s birthday; she herself is thought to have had a chronic condition similar to fibromyalgia
   • Purpose: Raise awareness of CINDs, including fibro, ME/CFS, MCS, Gulf War Syndrome, and more
   • Hashtags: #CIND, #May12th, #InvisibleIllness
4. World Fibromyalgia Awareness Day (May 12th)
   • Global observance: Shines a light on fibro’s challenges and encourages better care and recognition
   • Hashtags: #WorldFibromyalgiaAwarenessDay, #FibromyalgiaAwareness

Additional Established and Growing Awareness Dates

1. International Red Shoe Day (July 25th)
   • Purpose: A day of visibility and remembrance for invisible illnesses such as fibro, chronic fatigue, and Lyme disease
   • Hashtag: #RedShoeDay
2. Pain Awareness Month (September)
   • Purpose: Raise awareness of chronic pain conditions, including fibro, and advocate for greater empathy, care, and research
   • Hashtags: #PainAwarenessMonth, #ChronicPainAwareness
3. International Day of Persons with Disabilities (December 3rd)
   • UN-recognised global observance: Promotes understanding, inclusion, and the rights of people with disabilities, including those living with chronic or invisible illnesses
   • Hashtag: #IDPD

A Few Fibromyalgia Hashtags

• #Fibromyalgia: Main condition hashtag for awareness, stories, and education.
• #ChronicPain: Connects fibro to the wider pain community (arthritis, migraines, etc.).
• #ChronicIllness: Broad umbrella tag for all chronic conditions.
• #Spoonie: Popular tag based on ‘spoon theory,’ used worldwide.
• #FibromyalgiaAwareness: Advocacy and education, especially active in May.
• #InvisibleIllness: Highlights hidden struggles of conditions like fibromyalgia.
• #SpoonieLife: Focuses on daily life and coping with chronic illness.
• #ChronicFatigue: Used for posts about fatigue, often linked with fibro.
• #FibroWarrior: Empowerment hashtag celebrating strength and resilience.
• #FibroFighter: Similar to #FibroWarrior, highlighting persistence.
• #FibroFriday: Weekly hashtag for Friday discussions and reflections.
• #FunnyFibro: Humor and memes about life with fibromyalgia.
• #UKSpoonie: Connects UK-based spoonies.
• #SpoonieCommunity: Builds support and connection across the spoonie world.

And of course, #Flareability may make it to that list one day, too!

Useful Places to Start (UK Support & Resources)

If you’re looking for more structured support, here are some of the most recognised UK-wide organisations and resources for people living with fibromyalgia:

• Fibromyalgia Action UK (FMA UK) – National charity offering helplines, resources, benefits advice, and support for people with fibromyalgia.
  🔗 https://painuk.org/members/charities/fibromyalgia-action/
• Pain UK – Umbrella charity supporting organisations working with chronic pain conditions, including fibromyalgia.
  🔗 https://painuk.org/
• Fibromyalgia Awareness UK – Campaign-based charity focusing on raising awareness and providing support across the UK.
  🔗 https://www.fibroawarenessuk.org/
• NHS Fibromyalgia Pages – Official UK health information and self-management guidance.
  🔗 https://www.nhs.uk/conditions/fibromyalgia/