A Built-In “Off Switch” for Chronic Pain — And Why It Matters Now

For those of us living with chronic pain, the idea of a future cure can feel like a cruel promise. We’ve heard it all before: “someday,” “soon,” “in the pipeline.” But this new research offers something different — not just hope, but a real, biological mechanism in the brain that could be targeted to turn pain down. Not in theory. In practice.

A stylized illustration of the human brain with a glowing hub in the brainstem,
symbolizing the newly discovered “off switch” for pain.

What Did They Find?

A team of scientists led by Dr. J. Nicholas Betley at the University of Pennsylvania discovered a group of brain cells that act like an “off switch” for long-lasting pain. These cells live in a part of the brainstem called the lateral parabrachial nucleus (lPBN), and they’re activated when pain becomes chronic — the kind that doesn’t go away even after the injury heals.

But here’s the twist: these same cells also respond to things like hunger, fear, and thirst. When your brain decides survival is at stake — like when you're starving or in danger — it can actually suppress pain by flipping this internal switch.

How Does It Work?

The key player is a molecule called neuropeptide Y (NPY). When your brain is focused on something urgent (like finding food or escaping danger), NPY is released. It binds to special receptors (called Y1 receptors) on these brainstem neurons, and that quiets the pain signals before they reach the rest of your brain.

In other words: your brain already knows how to turn off pain. This research shows us where and how it does it.

Why This Matters for People in Pain

• It proves chronic pain isn’t “just in your head” — it’s in your brain’s wiring. That’s validating.

• It gives scientists a real target — these Y1R neurons — for developing new treatments.

• It opens the door to non-drug therapies — like behavioral tools (e.g., meditation, exercise, therapy) that might influence this pain circuit.

• It could lead to better diagnostics — using brain activity as a biomarker to prove and track chronic pain.

When Will This Help?

This isn’t a pill you can pick up tomorrow — but it’s not just a distant dream either. The discovery gives researchers a clear path: find ways to activate or mimic this “off switch” safely in humans. That could mean new medications, brain stimulation techniques, or even behavioral therapies designed to tap into this system.

So while it’s not a cure yet, it’s a concrete step — and one that finally focuses on the brain’s role in pain, not just the body’s.

Read the full research report at Penn University

Does Activity Pacing Really Help with Fibromyalgia? A Study Says Yes

 If you live with fibromyalgia, you’ve probably heard the advice: “Just pace yourself.” But what does that actually mean—and does it work?

A UK study tested a new way of teaching activity pacing to people with chronic pain and fatigue, including those with fibromyalgia. The results are promising and could help you better manage your symptoms.

What Is Activity Pacing?

Activity pacing is a strategy to help you balance activity and rest. Instead of pushing through pain or crashing after doing too much, pacing teaches you to:

• Break tasks into smaller chunks

• Take regular rest breaks

• Plan your day around your energy levels

• Avoid the boom-and-bust cycle

But here’s the catch: pacing advice can vary wildly depending on who you ask. That’s why researchers created a standardised activity pacing framework—a consistent way for healthcare professionals to teach pacing.

What Did the Study Do?

The study took place in a UK NHS pain clinic and included 107 adults with conditions like fibromyalgia, chronic fatigue syndrome, and chronic back pain.

Participants joined a six-week rehabilitation program that followed the new pacing framework. Researchers tracked changes in symptoms like:

• Pain

• Fatigue (physical and mental)

• Depression and anxiety

• Self-confidence

• Physical and mental function

• Quality of life

They also looked at how well patients stuck with the program and how satisfied they were.

What Were the Results?

• 77% of eligible patients joined the study

• 89% attended at least five sessions

• Satisfaction scores averaged 9 out of 10

• Symptoms improved during the program

• Improvements were still noticeable three months later

In short: pacing helped. People felt better, functioned better, and learned how to manage their symptoms more effectively.

READ THE STUDY RESULTS

Things to Try When You Have Fibromyalgia

36 things to try when you have Fibromyalgia.

Fibromyalgia is a complex condition that affects every part of life—pain, fatigue, sleep, mood, and cognition. While there’s no universal fix, there are many strategies that can help you feel better, function more fully, and reclaim your energy. Here’s a comprehensive list of things to try, backed by research and real-life experience.

1. D-Ribose

This naturally occurring sugar helps fuel your cells. Studies by Dr. Jacob Teitelbaum showed energy boosts of 45–61% in fibromyalgia and chronic fatigue patients. Available as a supplement, many find it improves stamina and mental clarity.

2. Palmitoylethanolamide (PEA)

PEA is a fatty acid amide that supports the endocannabinoid system and may reduce pain and inflammation. It’s available over the counter and has shown promise in chronic pain conditions including fibromyalgia.

3. Low Dose Naltrexone (LDN)

Originally used to treat addiction, LDN at low doses may help regulate the immune system and reduce pain sensitivity. Many fibro patients report improved sleep and reduced flare-ups.

4. Myofascial Massage

This gentle, sustained-pressure technique targets connective tissue and muscle knots. It can relieve pain, improve mobility, and reduce tension without triggering post-massage soreness.

5. Reflexology

By stimulating pressure points on the feet, reflexology may help balance the nervous system and reduce pain perception. It’s a relaxing, non-invasive therapy worth trying.

6. Allergy Testing

Hidden food sensitivities or environmental allergies can exacerbate fibro symptoms. Identifying and eliminating triggers may reduce inflammation and fatigue.

7. Hydrotherapy

Moving in warm water can improve circulation, reduce stiffness, and ease pain.

8. Hyperbaric Oxygen Therapy (HBOT)

HBOT involves breathing pure oxygen in a pressurized chamber. Some studies suggest it may reduce fibro pain and improve cognitive function by enhancing tissue oxygenation.

 9. Aerobic Exercise

Gentle aerobic activity (walking, swimming, cycling) 2–3 times a week can improve pain, fatigue, and mood. Start slow, increase gradually, and expect some short-term discomfort before long-term gains.

10. Strength Training

Light resistance training can help combat fatigue and improve muscle tone. Combine with endurance exercises for best results.

11. Mindfulness & Meditation

Practicing mindfulness can help reduce stress, improve pain tolerance, and calm the nervous system. Even 10 minutes a day can make a difference.

12. Exergaming

Video games that involve movement—like Wii Fit or VR fitness—can be a fun, low-impact way to stay active and engaged.

13. Whole-Body Vibration

Using vibration platforms alongside traditional exercise may reduce fatigue and improve physical function.

14. Balneotherapy

Soaking in mineral-rich baths—like Epsom salts or hot springs—can soothe pain and boost energy.

15. Sleep Hygiene

Better sleep = better everything. Stick to a routine, avoid stimulants before bed, and create a calming sleep environment.

16. Raw Vegetarian Diet

A mostly raw plant-based diet may help reduce fatigue and inflammation. Think fresh veggies, fruits, nuts, and seeds.

17. TENS Units

These portable devices deliver electrical pulses to relieve pain and fatigue. Affordable and widely used.

18. Transcranial Magnetic Stimulation

Noninvasive brain stimulation that may reduce fatigue and improve mood.

19. Electroconvulsive Therapy

Though controversial, ECT has helped some patients with severe fatigue and depression.

20. Cortical Electrostimulation

Another brain-based therapy showing moderate improvement in fatigue.

21. Sensory Motor Rhythm Treatment

A neurofeedback technique that helps regulate brain activity and reduce fatigue.

22. Low-Energy Laser Therapy

Mixed results for fatigue, but promising for pain relief.

23. Pulsed Ultrasound & Interferential Current

These therapies may help with morning fatigue and muscle stiffness.

24–30. Medications That May Help

Some prescription drugs have shown promise in reducing fatigue and improving quality of life:

• Duloxetine (Cymbalta)

• Milnacipran (Savella)

• Fluoxetine (Prozac)

• GHB/Sodium Oxybate (Xyrem)

• Pramipexole (Mirapex)

• Quetiapine (Seroquel)

• Raloxifene (Evista)

31. Acetyl L-Carnitine

An amino acid supplement that may improve mental clarity and energy.

32. Pacing & Planning

Use the “energy envelope” approach—plan your day around your energy levels to avoid crashes. Prioritize, delegate, and rest before you’re exhausted. Find out more about pacing here.

33. Multidisciplinary Care

Work with a team—rheumatologists, physiotherapists, psychologists—to address all aspects of fibromyalgia. A holistic approach often yields better results.

34. Yoga

Gentle yoga sequences tailored for chronic illness can ease pain, fatigue, and depression. It’s a calming way to reconnect with your body.

35. Acupuncture

A course of acupuncture treatment has been proven many times to significantly help reduce the pain of fibromyalgia. 

36. The Guaifenesin Protocol for fibromyalgia

It is a strict dietary restriction of salicylates and the use of guaifenesin, an expectorant medication. Some people say this cuts their fibromyalgia pain a lot. 

What’s your go-to strategy for managing fibromyalgia fatigue? Is it on the list? Share your tips in the comments and help others find relief!

Disclaimer: I am not a medical professional, and I am not recommending any specific treatment. I have personally only tried some of these therapies. This article is for informational purposes only and is based on published research. Always consult with a qualified healthcare provider before starting any new treatment. Different approaches work for different people, and what helps one person may not help another.

Amazon Affiliate Disclaimer: Some of the links in this post are Amazon affiliate links, which means I may earn a small commission if you buy something through them—at no extra cost to you. I only share products I think might be useful or interesting, but please do your own research before making a purchase. Thanks for supporting the site!

What helps you stay hopeful on tough days?

Lying in bed on a bad day. 

On tough days, I’ve found that hope doesn’t always come in big, dramatic moments—it often shows up quietly.

Sometimes it’s a message from a friend who just gets it. Or a walk outside where the air feels gentle and the sky reminds me that everything changes. Other times, it’s reading someone else’s story and realizing I’m not alone in this. Or understanding that there is a whole community of people out there who also live with chronic pain and try to support each other when they can. 

I’ve learned to look for small wins: getting out of bed, making a cup of tea, writing a few lines in my journal. Those tiny acts remind me that I’m still moving, still trying, still here.

Sitting on the verandah with a cup of tea on tough days can be a good achievement. 

And honestly, giving myself permission to rest—without guilt—has been one of the most hopeful things of all. It tells me I’m worthy of care, even when I’m not at my best. Someone said to me, "just give yourself grace for all you have lived through" and after so many years of chronic pain that really resonated with me. 

Also remembering that I have been through many flare ups of symptoms before and this too shall pass. 

Sometimes I need to talk and I reach out to the many helpful call lines where I live in Australia like Sane Mental Health or Lifeline. That helps me get my thoughts more in order and have contact with a non judgemental listener. 

What helps you stay hopeful? I’d love to hear. Please let me know in the comments. 

You might also like to read:

• Do you allow yourself to ask for support?
• Self care strategies that help me manage pain
• Natural treatments for fibromyalgia

Fibromyalgia Self-Care Strategies That Help Me Manage Pain

Living with fibromyalgia has taught me to listen to my body in ways I never expected. Pain isn’t just physical — it’s emotional, relational, and deeply personal. Over time, I’ve gathered a toolkit of self-care strategies that help me feel more grounded, less overwhelmed, and more in control of my day. These aren’t cures, and they don’t erase the hard days, but they help me move through them with a little more grace.

If you’re navigating fibromyalgia too, I hope something here resonates with you.

1. Pacing Over Pushing

I used to push myself through pain, thinking I had to keep up or prove something. Now I pace. I break tasks into smaller steps, rest before I crash, and let go of guilt when I need to pause. 

TIP: use timers and visual checklists to stay on track without burning out. It’s not laziness — it’s wisdom.

2. Gentle Movement That Feels Safe

Some days, even stretching feels impossible. But when I can, gentle movement helps loosen the stiffness and calm my nervous system. I’ve found comfort in slow walks, restorative yoga, and even just swaying to music in my kitchen. I keep a “flare day movement menu” — short, low-impact options that feel doable when everything hurts. 

TIP: start stretching each morning while lying in bed. The mattress and pillow supports you and you can do slow and small movements like turning your head from side to side to reduce neck pain etc.

3. Protecting My Sleep

Sleep is sacred, and fibromyalgia makes it elusive. I’ve created a bedtime routine that helps: no screens after 9pm, herbal tea, magnesium, and painkillers if needed. It’s not perfect, but it’s progress.

TIP: The temperature of your room really matters. Work out what is right for you in each season. 

4. Calming My Nervous System

Mind-body practices have been a lifeline. I use guided meditations (especially ones made for chronic pain), breathwork, and journaling to help me process the emotional weight of living with fibromyalgia. Even two minutes of deep breathing can shift my pain response. I remind myself: my body is not the enemy — it’s asking for care.

TIP: Find an app or a Youtube video you like and listen to it for guided meditations or breathwork. 

5. Nourishing Myself Without Pressure

Food can be complicated, especially when energy is low and sensitivities are high. I aim for anti-inflammatory meals when I can — leafy greens, berries, omega-3s — but I also give myself grace. Hydration helps, and I keep easy snacks nearby for days when cooking feels impossible.

TIP: Greek yoghurt, nuts and fruit is a great easy go to on high pain days. 

6. Tracking What Hurts (and What Helps)

I keep a simple pain journal to notice patterns. Weather changes, stress, certain foods — they all play a role. Tracking helps me feel less confused and more empowered. It also gives me language to advocate for myself with doctors and loved ones.

TIP: Do this in your calendar so you know where it is. 

7. Finding My People

Fibromyalgia can feel isolating, but connection is medicine. I’ve found comfort in online communities, support groups, and honest conversations with people who get it. Sharing my story — and hearing others — reminds me I’m not alone. We’re all figuring this out together.

8. Setting Boundaries That Protect Me

This one’s been hard, but life-changing. I’ve learned to say no without apology, to ask for accommodations, and to protect my energy like it’s sacred. Scripts help. My favorite: “I’d love to, but I need to rest today.” Boundaries aren’t walls — they’re bridges to safer, more honest relationships.

TIP: Don't say yes to every request, say "I'll check my diary and get back to you".

Final Thoughts

Fibromyalgia asks us to live gently, intentionally, and with deep self-compassion. These strategies help me feel more like myself — even on the hard days. If you’re reading this, I hope you know: your pain is real, your needs are valid, and you deserve care that honors your whole self.

If you’ve found a self-care practice that helps, I’d love to hear about it. Let’s keep building a toolkit.

You might also like to read:

• Do you allow yourself to ask for support?
• The influence of weather on fibro - a survey
• Natural treatments for fibromyalgia

IMC-1 Fast-Tracked for Fibromyalgia: What You Need to Know

In January 2016, the U.S. Food and Drug Administration (FDA) granted Fast Track designation to IMC-1, a novel combination therapy developed by Innovative Med Concepts for the treatment of fibromyalgia. This designation was based on promising Phase 2 trial results and the urgent need for more effective treatments for this complex, chronic condition.

IMC-1 combines:

• Famciclovir – an antiviral agent

• Celecoxib – a COX-2 selective anti-inflammatory

The therapy is designed to suppress tissue-resident herpes viruses, which may play a role in sustaining fibromyalgia symptoms. 

Some researchers—most notably Dr. Skip Pridgen—have proposed that herpes simplex virus type 1 (HSV-1) may play a role in fibromyalgia by affecting the central nervous system or gut tissue.

The Phase 2 trial (PRID-201) showed improvements in pain, fatigue, and overall symptom burden, leading to the FDA’s decision to fast-track its development.

As of 2023, Virios Therapeutics (now leading the development) received initial FDA feedback on its proposed Phase 3 program, with further toxicology data submitted in May 2023. This marks a continued effort to bring IMC-1 closer to approval and offer new hope to millions living with fibromyalgia.

As of September 2025, IMC-1 is not yet commercially available for fibromyalgia treatment. It remains in the clinical trial pipeline, with ongoing development led by Virios Therapeutics.

What to Expect:

If Phase 3 trials confirm safety and efficacy, IMC-1 could move toward FDA approval and availability—but this process typically takes several years. For now, it’s considered an investigational drug, not something patients can access outside of clinical trials.

Final Thoughts:

So, while the HSV-1 theory is intriguing and worth watching, fibromyalgia remains a diagnosis based on clinical criteria, not viral testing. I am definitely watching but think that this new drug therapy may help a percentage of people with Fibromyalgia but not all. Patients deserve evidence-based care that reflects the full spectrum of their symptoms.

Practical Tips for Weather Sensitivity when living with Fibromyalgia

 Some days, it feels like my body is more attuned to the weather than the forecast itself. A storm rolls in, and suddenly my joints ache, my energy dips, and even my vision feels foggy. 

Living with fibromyalgia means learning to read the sky like a second language—because the weather doesn’t just change the atmosphere, it changes me. 

Over time, I’ve gathered a few practical strategies that help soften the impact. They’re not cures, but they offer a bit of steadiness when everything else feels unpredictable.

Practical Tips: Coping with Weather Sensitivity

• Layered clothing for temperature shifts

• Dehumidifiers or fans during humid spells

• Warm baths or heated blankets in cold weather

• Gentle movement indoors when outdoor conditions flare symptoms

• Tracking symptoms in a journal alongside weather patterns

• Eye protection in wind or bright light: Sunglasses or wraparound glasses can reduce sensory overload.

• Hydration reminders: Weather extremes can dehydrate you faster—setting gentle reminders to sip water may help.

• Weighted blankets for grounding: Especially during barometric shifts, some find comfort in the steady pressure.

• Mindful pacing: On flare-prone days, plan for extra rest and reduce sensory input where possible.

Frequently Asked Questions about Weather & Fibro

Can barometric pressure really affect pain? Some people report increased pain when pressure drops before a storm. While science hasn’t confirmed this universally, anecdotal evidence is strong.

Is it worse in winter or summer? It varies. Some feel worse in cold, damp conditions; others struggle with heat and humidity. There’s no one-size-fits-all answer.

Should I move to a different climate? Relocation is a big decision. Some people find relief in milder climates, but others don’t notice much change. It’s worth trialing before committing.

How can I track weather-related flares? Try using a symptom tracker app or a simple journal. Note pain, fatigue, mood, and weather conditions daily for a few weeks.

If you’re weather-sensitive too, I just want to say: you’re not imagining it, and you’re not alone. It’s okay to adapt, to rest, to wrap yourself in warmth or retreat from the heat. These small acts of care are not weakness—they’re wisdom. Fibromyalgia asks a lot of us, but we keep showing up, adjusting, and listening to our bodies with quiet courage. I hope these tips offer a little comfort, and maybe even a sense of solidarity. You deserve that.

You might also like to read:

• The influence of weather on fibro - a survey
• Do you allow yourself to ask for support?
• Self care strategies that help me manage pain
• Natural treatments for fibromyalgia

Fibromyalgia and the Eyes: What We’re Finally Starting to See

 

For many of us living with fibromyalgia, the list of symptoms feels endless—and often invisible. Pain, fatigue, brain fog, sensory overload. But what if some of the discomfort we feel isn’t just neurological or muscular… but ocular?

A new study published in Rheumatology International has confirmed what many of us have long suspected: people with fibromyalgia have significantly higher rates of astigmatism, dry eye disease (DED), and meibomian gland dysfunction (MGD) compared to those without FMS. You can read the full article here. 

What the Study Found

Researchers in Turkey conducted a cross-sectional analysis of fibromyalgia patients and healthy controls. While visual acuity and eye pressure were similar between groups, the FMS group showed:

• Higher astigmatism in both eyes

• 36.6% prevalence of MGD (vs. 4.3% in controls)

• 60.6% prevalence of DED (vs. 21.4% in controls)

These findings suggest that ocular symptoms may be part of the fibromyalgia landscape, not just coincidental complaints.

Why This Matters

Many of us experience:

• Blurred vision

• Light sensitivity (photophobia)

• Eye pain or dryness

• Trouble reading or focusing visually

These symptoms are often dismissed or misattributed. But this research points to autonomic nervous system dysfunction and immune system involvement as possible culprits—both of which are central to fibromyalgia.

It’s not “just in your head.” It’s in your eyes, too.

Connecting the Dots: Irlen Syndrome, Astigmatism, and Sensory Processing

Some in the chronic illness and neurodivergent communities have wondered aloud: could there be a link between fibromyalgia and Irlen Syndrome—a visual processing condition that causes distortions, headaches, and light sensitivity?

While Irlen isn’t an eye disorder per se, it overlaps with many fibro-related symptoms. And with this new data on astigmatism and dry eye, the connection feels worth exploring. Could sensory dysregulation be the thread that ties these experiences together?

What You Can Do

• Ask for a full ocular assessment—especially if you experience visual discomfort

• Track your symptoms and bring them to your provider with language like: “I’ve read that fibromyalgia may increase risk for dry eye and astigmatism. I’d like to explore this further.”

• Consider tinted lenses or overlays if you suspect Irlen-like symptoms

• Validate your experience—even if no one else has named it yet

Fibromyalgia is more than pain. It’s a multisystem condition that affects how we see, feel, and move through the world. This study is one more step toward recognition—and one more reason to trust your body’s signals.

If you’ve felt like “one of those people who has everything and a lot more,” you’re not alone. You’re part of a community that’s finally being seen.

You may be interested in my previous post on The Eyes and Fibromyalgia which explains some ways to reduce eye symptoms and has interesting information from people with these issues in the comments section. 

You might also like to read:

• Do you allow yourself to ask for support?
• Self care strategies that help me manage pain
• Natural treatments for fibromyalgia

Tonmya for Fibromyalgia: What You Need to Know

FAQ for the Fibromyalgia Community

🟣 What is Tonmya?

Tonmya is a new FDA-approved medication for adults with fibromyalgia. It’s a non-opioid, once-daily tablet that dissolves under the tongue at bedtime, designed to reduce pain and improve sleep.

🟣 How does Tonmya work?

Tonmya targets pain and nonrestorative sleep, two core symptoms of fibromyalgia. It’s absorbed quickly through the mouth’s mucosa, bypassing the liver’s first-pass metabolism. This helps reduce side effects and allows the medication to act faster.

🟣 What makes Tonmya different from other treatments?

• First new FDA-approved fibromyalgia drug in over 15 years

• Sublingual delivery (under the tongue) for faster absorption

• Lower risk of long-lasting metabolites that can cause side effects

• Designed to improve sleep quality, which is often disrupted in fibromyalgia

🟣 How effective is it?

In clinical trials with over 1,400 participants:

• Tonmya significantly reduced daily pain scores compared to placebo

• Many patients saw a ≥30% improvement in pain after 3 months

• Improvements were seen as early as week one

🟣 What are the common side effects?

Reported side effects include:

• Mouth numbness or tingling

• Dry mouth

• Drowsiness

• Fatigue

• Canker sores These were generally mild and occurred in a small percentage of participants.

🟣 Is Tonmya safe for everyone?

Tonmya is not recommended for:

• People allergic to cyclobenzaprine

• Those taking MAO inhibitors or within 14 days of stopping them

• People who are pregnant or planning pregnancy, due to potential risks shown in animal studies

🟣 When will Tonmya be available?

Tonmya is expected to be commercially available in the U.S. by late 2025.

🟣 Can I ask my doctor about it now?

Yes. While it’s not yet on pharmacy shelves, you can start the conversation with your healthcare provider. They can help you track availability and assess whether Tonmya might be a good fit for your treatment plan.

Read more in-depth information about Tonmya on this blog.

1. Drugs.com
2. AFSA
3. TONIX pdf

Big News for the Fibromyalgia Community: A New FDA-Approved Treatment Is Here

 

After more than 15 years without new treatment options, there’s finally a breakthrough: the U.S. Food and Drug Administration (FDA) has approved Tonmya™, a new medication specifically for fibromyalgia.

What Is Tonmya?

Tonmya (cyclobenzaprine HCl) is a non-opioid, once-daily tablet that you take under the tongue at bedtime. It’s designed to absorb quickly and help reduce pain while also targeting one of fibromyalgia’s most stubborn symptoms: nonrestorative sleep—that feeling of waking up tired no matter how long you’ve slept.

What Did the Research Show?

Tonmya was tested in three major clinical trials involving over 1,400 people with fibromyalgia. The results were promising:

• People taking Tonmya reported significant reductions in daily pain compared to those taking a placebo.

• Many participants experienced a 30% or greater improvement in pain after three months.

• The medication was generally well tolerated. Some reported mild side effects like mouth numbness, dry mouth, drowsiness, or canker sores.

Why This Matters

Fibromyalgia affects over 10 million adults in the U.S., most of whom are women. It’s a complex condition that causes widespread pain, fatigue, sleep issues, and cognitive challenges. For years, treatment options have been limited and often ineffective. Tonmya’s approval offers renewed hope for those who’ve felt unheard and underserved.

As Dr. Sharon Waldrop, a person living with fibromyalgia, shared:

“This approval is a promising step forward and brings renewed hope to millions.”

When Will It Be Available?

Tonmya is expected to be available in the U.S. by late 2025. If you’re interested in learning more or speaking with your healthcare provider, you can visit Tonix Pharmaceuticals.

If you’ve been living with fibromyalgia and feeling like nothing helps, this news might feel like a small light at the end of a long tunnel. It’s okay to feel cautious, curious, or even hopeful. You deserve options, and you deserve care that sees the full picture of your experience.

My Travel Essentials: What I Always Pack as Someone Living with Fibromyalgia

Planning a trip is overwhelming for me as someone who lives with chronic pain and ongoing health issues. Forgetting even one small thing can make travel much harder than it needs to be. Over time, I’ve learned what really helps me stay comfortable, safe, and able to enjoy my time away. I recently went on a 5 week trip to Europe and this is what I took. 

The Right Bag Matters

Carrying heavy luggage is tough on my body, so I always choose a lightweight suitcase or backpack with smooth-rolling wheels and strong handles. I also prefer bags with compartments—it saves me energy because I don’t have to dig around looking for things when I’m already tired.

Power and Connectivity

A universal adapter and a power bank are must-haves. When I rely on my phone for medication reminders, maps, or emergency contacts, I can’t afford for the battery to die while I’m out. Having backup power gives me peace of mind. I actually forgot a universal adaptor on my recent holiday and it caused unwanted, unnecessary issues in both Bangkok and Europe, which have different plugs. The hotels did not provide universal adapters and I had to pay for taxis and travel to the shop and buy one before I could use my essential CPAP machine, for sleep apnea or charge my phone. 

Essential Documents

Because unexpected things happen (especially with chronic illness), I make sure all my paperwork is organized:

• Passport & visas (with at least six months validity).

• Travel insurance that covers pre-existing conditions—this one is especially important for me.

• A list of emergency contacts, including my doctor’s details, my insurance provider, and a family member at home.

• A list of my medications from the doctor in case customs query any tablets.

• Copies of my prescriptions. (My husband has twice now left meds in hotel bathrooms, which has had dire consequences.)

• A letter from my doctor stating that the CPAP machine is an essential medical device. This is so it can be carried as extra hand luggage on top of the air lines hand luggage requirements. 

Health & Medication Kit

This is my most important packing category. I travel with:

• My daily prescriptions and vitamins (kept in original bottles).

• Pain relief options (both medication and comfort items, like heat patches).

• Allergy tablets medication.

• A small first aid kit and hand sanitizer.

• 2 pairs of my prescription glasses. On one holiday I learnt my lesson when my glasses broke and I could not get them fixed and struggled with reading for the rest of the journey. 

• Sunglasses and hat are essential when you do not cope well with glare and bright sun.

• Sunscreen. This was so expensive in Europe I was so glad I remembered to pack my favourite face one which I also used on my body. 

I pack these in my carry-on so they’re always with me. I’ve learned to bring more medication than I think I’ll need—delays happen, and I can’t risk running out.

Clothing That Works for My Body

Comfort is key when you live with pain or fatigue. I pack layers that are easy to slip on and off depending on the weather, breathable fabrics that don’t irritate my skin, or need much ironing and clothes that won’t dig in if I’m sitting for long stretches.

Supportive, cushioned shoes are also non-negotiable. I need footwear that’s kind to my joints, especially if I’m walking more than usual. I usual travel with 2 pairs of joggers and a pair of slip on thongs for beach/pool/sauna. 

I travel light and have reduced my clothing down to 3 t-shirts, 1 dressier blouse, 3 pants, 1 swimming costume and matching sarong, 1dress, and alight weight long sleeve shirt. If there is colder weather I add a heat tech singlet and a puffer jacket and scarf. I stick to one color scheme so that all the clothes mix and match. 

Staying Organized Without Wasting Energy

Packing cubes and travel organizers help me save precious energy. Knowing exactly where my medications, documents, and comfort items are means I don’t waste time rummaging through my bag when I’m already drained. That is so frustrating!

Safety & Security

I carry a money belt so I can keep my passport, cards, and cash close without adding stress about theft. Two of the hotels we stayed in did not have a safe and Air BNB's usually never have a safe. TSA-approved locks on my luggage also make me feel more secure when I can’t keep an eye on my bag.

Comfort & Rest

Because chronic pain often flares when I don’t sleep well, I always pack:

• A sleep mask and earplugs to help me rest on planes or in noisy hotels. I have finally found re-shapeable wax ear plugs that are comfortable.

• A lightweight travel pillow so I can support my neck and back on long journeys.

• Heating strips —for pain relief on the go. I am happy with the non smelly ones recommended by my doctor. 

Hydration & Snacks

Staying hydrated and eating regularly helps me manage energy crashes. I always carry a reusable water bottle and a few healthy snacks (nuts, dried fruit, or muesli bars, protein bars) that don’t need refrigeration. That way, I don’t have to rely on whatever’s available when fatigue hits.

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Travel Essentials Checklist (Chronic Illness & Chronic Pain Edition)

🧳 Luggage & Organization

• Lightweight suitcase or backpack with sturdy wheels/handles

• Packing cubes or travel organizers (save energy and time)

• TSA-approved luggage locks

• Money belt for passport, cards, and cash

🔌 Power & Tech

• Universal adapter (for international trips)

• Power bank/portable charger

• Charging cables in carry-on

📄 Important Documents

• Passport (valid for at least 6 months)

• Visas (if required)

• Travel insurance with pre-existing condition cover

• Copies of prescriptions (paper + digital)

• Emergency contacts: doctor, embassy, insurer, trusted family/friend

• Copies of all documents stored in a safe, separate spot

💊 Medications & Health Supplies

• All prescription medications (in original packaging)

• Extra supply in case of delays

• Pain relief (medication, heat/cold patches, TENS unit if helpful)

• Allergy tablets, motion sickness tablets

• Small first aid kit (band-aids, antiseptic wipes, etc.)

• Hand sanitizer or wipes

• Sunscreen 

👕 Clothing & Footwear

• Weather-appropriate clothing (layering options are best)

• Soft, breathable fabrics that don’t irritate skin

• Comfortable walking shoes with cushioning and support

• sunglasses and hat

• 2 pairs of prescription glasses

😴 Comfort & Rest

• Neck pillow for flights/bus rides

• Sleep mask + earplugs (for noisy/light environments)

• Any small comfort aid (wrap, cushion, or heating pad if space allows)

🥤 Food & Hydration

• Reusable water bottle (stainless steel if possible)

• Healthy snacks: nuts, dried fruit, protein bars, crackers

• Electrolyte packets or rehydration sachets (helpful during flare-ups or fatigue)

📚 Entertainment & Mental Ease

• E-reader or small paperback book

• Downloaded music, podcasts, or audiobooks for downtime

• Journal or notebook (optional but grounding)

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Tip: Keep medications, documents, and comfort items in your carry-on so they’re always accessible.

Tip: Pack more meds and supplies than you think you’ll need—you can’t always get refills easily abroad.

Tip: Build in extra rest time in your travel schedule to avoid flare-ups.

Five quotes about Fibromyalgia

Here are five quotes about fibromyalgia, that capture the experience, challenges, and resilience associated with the condition:

1. “I only get one life, and I will not let fibromyalgia take the joy from living it.”  

   — Morgan Freeman  

 Source: Fibromyalgia News Today  

This quote reflects Freeman’s determination to maintain a fulfilling life despite his fibromyalgia diagnosis following a 2008 car accident.

2. “I get so irritated with people who don’t believe fibromyalgia is real. It’s really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder, all of which sends the nervous system into overdrive. Chronic pain is no joke.”  

   — Lady Gaga  

   Source: Posted by @globetrotteri on X 

Lady Gaga openly discusses the reality of fibromyalgia, highlighting its complex interplay with mental health and chronic pain.

3. “You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless.”  

   — Shelly Bolton, Fibromyalgia: A Guide to Understanding the Journey  

   Source: Goodreads 

Bolton articulates the invisible and relentless nature of fibromyalgia, emphasizing its impact and the lack of a cure.

4. “Fibromyalgia…Imagine waking up every day in pain, not knowing whether you can function. Fibromyalgia requires learning the balance between surrendering and fighting. And no-one even knows you are in a battle.”  

   — Unknown  

 Source: Fibro Wellness Hub  

This anonymous quote captures the daily struggle and invisible battle faced by those with fibromyalgia.

5. “My pain is invisible, so is the pain you inflict when you don’t believe me.”  

   — Unknown  

Source: Fibromyalgia News Today  

This quote underscores the frustration of having an invisible illness and the additional emotional pain caused by disbelief from others.

10 medically backed statements about fibromyalgia

 

Here are 10 medically backed statements about fibromyalgia, based on current medical understanding:

1. Chronic Condition: Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, sleep disturbances, and cognitive difficulties, often referred to as "fibro fog."

2. Central Nervous System Involvement: It is believed to involve altered pain processing in the central nervous system, leading to heightened sensitivity to pain (hyperalgesia) and pain from stimuli that are not typically painful (allodynia).

3. Prevalence: Fibromyalgia affects approximately 2-4% of the global population, with a higher prevalence in women (about 3-6% of women compared to 0.5-1% of men).

4. Diagnosis: Diagnosis is primarily clinical, based on patient history and symptoms, often using the American College of Rheumatology (ACR) 2016 criteria, which assess widespread pain and symptom severity without requiring tender point examinations.

5. Common Symptoms: Beyond pain, common symptoms include fatigue, sleep disturbances (e.g., non-restorative sleep), cognitive issues, headaches, irritable bowel syndrome, and mood disorders like anxiety or depression.

6. No Structural Damage: Fibromyalgia does not cause inflammation or damage to joints, muscles, or connective tissues, distinguishing it from conditions like rheumatoid arthritis or lupus.

7. Potential Triggers: Symptoms may be triggered or exacerbated by physical or emotional stress, infections, injuries, or hormonal changes, though the exact cause remains unknown.

8. Treatment Approaches: Management typically involves a multidisciplinary approach, including medications (e.g., duloxetine, pregabalin), cognitive-behavioral therapy (CBT), exercise (low-impact aerobic), and stress management techniques.

9. Genetic and Environmental Factors: Research suggests a genetic predisposition, with fibromyalgia often running in families, combined with environmental factors like stress or trauma that may contribute to its onset.

10. Comorbidities: Fibromyalgia frequently coexists with other conditions, such as chronic fatigue syndrome, migraines, temporomandibular joint disorder (TMJ), and autoimmune diseases, complicating diagnosis and treatment.

These statements are supported by sources like the American College of Rheumatology, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), and peer-reviewed studies available up to July 2025.