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. 

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.

---

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)

---

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.