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Dear Fibromyalgia, London (2026)

09/09/2026

When the Scan Looks “Normal,” but the Pain Is Still Real

Imagine living with back pain day after day. Sitting hurts. Standing too long hurts. Sleep becomes difficult because finding a comfortable position feels almost impossible.

Eventually, you have tests or imaging done, hoping for an explanation.

Then you hear: “We don't see anything that explains this level of pain.”

For someone living with fibromyalgia, those words can be deeply frustrating. But a lack of obvious structural damage doesn't mean the pain is imaginary.

Fibromyalgia is associated with changes in the way the nervous system processes pain. One concept researchers often discuss is central sensitization, in which the central nervous system becomes unusually responsive to sensory signals. In simple terms, the body's pain “volume” may be turned up, making sensations more intense or persistent than expected.

This helps explain why pain severity doesn't always match what can be seen on an X-ray or scan.

Back pain can be especially challenging because nearly everything involves the spine—getting out of bed, sitting at a desk, driving, cooking, walking, or simply trying to relax. When fibromyalgia is part of the picture, pain may also occur alongside stiffness, fatigue, poor sleep, and increased sensitivity.

However, persistent back pain shouldn't automatically be assumed to be fibromyalgia. New or worsening pain—particularly when accompanied by weakness, significant numbness, bowel or bladder changes, fever, or other concerning symptoms—deserves medical evaluation.

Sometimes the hardest part of invisible pain isn't only experiencing it.

It's trying to explain why you're hurting when there is nothing obvious for someone else to see.

A normal-looking scan can be reassuring in some ways, but it doesn't erase a person's experience.

Have you ever been told that your tests looked normal even though you were experiencing significant pain? How did that make you feel?

08/09/2026

When a “Normal” Stomach Sensation Feels Anything but Normal

Dinner wasn't unusual. The portion wasn't huge. Nothing seemed obviously wrong.

Yet shortly afterward, his abdomen began to feel painfully uncomfortable. What started as fullness became pressure, cramping, and a sensation so intense that concentrating on anything else became difficult.

He found himself wondering, “Why does my stomach react so strongly?”

For some people living with fibromyalgia, digestive problems can be another complicated part of daily life. Fibromyalgia frequently overlaps with gastrointestinal conditions such as irritable bowel syndrome (IBS), and researchers have studied visceral hypersensitivity—increased sensitivity to sensations coming from internal organs—as one possible piece of the chronic-pain puzzle.

Normally, digestion creates sensations as food moves through the gastrointestinal tract. Most people barely notice many of these signals. But when visceral sensitivity is heightened, pressure, stretching, gas, or other digestive sensations may be experienced as much more uncomfortable or painful.

That doesn't mean ordinary digestion itself is necessarily causing severe pain, nor does every stomach problem come from fibromyalgia.

Abdominal pain can have many causes, including IBS, constipation, food intolerances, infections, medication effects, gallbladder problems, ulcers, and numerous other conditions. New, severe, persistent, or worsening abdominal pain—particularly when accompanied by symptoms such as repeated vomiting, fever, bleeding, fainting, or significant unexplained weight loss—should receive medical attention.

Living with fibromyalgia can sometimes feel like having the volume turned up on sensations throughout the body. When that sensitivity reaches the digestive system, something as routine as finishing a meal may become stressful and unpredictable.

And that can affect more than appetite. It can influence sleep, social plans, confidence about eating away from home, and overall quality of life.

If you live with fibromyalgia, do digestive symptoms become noticeably worse during your flare-ups, or do they seem to follow their own pattern?

07/09/2026

When Chronic Pain Can’t Silence What You Love

There are moments when chronic illness changes the rhythm of an entire life.

The body that once moved without much thought may begin asking for more rest. Energy becomes something to protect. Pain can turn ordinary responsibilities into challenges, and the future may suddenly look different from the one you had imagined.

For a singer, performer, artist, worker—or anyone deeply connected to what they do—that change can feel especially personal.

Living with fibromyalgia can mean navigating widespread pain, fatigue, sleep difficulties, cognitive symptoms, and unpredictable days. Sometimes the hardest part isn't simply experiencing the symptoms. It's wondering whether you'll still be able to do the things that make you feel most like yourself.

But adapting doesn't always mean giving up.

Sometimes it means rebuilding your routine around what your body can manage. It means pacing yourself, allowing recovery time, accepting support, changing expectations, and finding new ways to protect the things that bring meaning to your life.

There may be setbacks. There may be days when rest wins. There may even be moments when you wonder whether returning to something you love is possible.

Yet passion can survive alongside limitation.

You don't have to perform at yesterday's pace to prove that something still matters to you. Progress can be slower, quieter, and less predictable than before—and still be progress.

Chronic illness may change how you pursue what you love, but it doesn't automatically erase why you love it.

Sometimes courage is simply saying: “This still matters to me, so I'm going to find my way forward.”

Has chronic illness ever forced you to change how you pursue something you deeply love? What helped you keep going?

06/09/2026

When Your Neck Never Seems to Get a Break

She woke up and immediately knew it was going to be one of those days.

Before she even lifted her head from the pillow, her neck felt heavy and stiff. Turning to check the clock sent an aching sensation across her shoulders. By breakfast, she was already rubbing the same tender spot she had rubbed a hundred times before.

There was no dramatic injury. No obvious explanation anyone could see.

Just pain—persistent, exhausting, and very real.

Neck and shoulder discomfort can be especially frustrating for people living with fibromyalgia. Fibromyalgia is associated with widespread pain, tenderness, fatigue, sleep disturbances, and changes in how the nervous system processes pain signals. For some people, the neck and upper shoulders become particularly troublesome areas.

And neck pain rarely stays neatly contained to one moment of the day.

It can make working at a computer uncomfortable. Driving may become tiring when turning your head hurts. Looking down at a phone can aggravate stiffness. Then nighttime arrives, and finding a comfortable sleeping position becomes another challenge.

Poor sleep may leave you more exhausted and sensitive to pain the following day, creating a difficult cycle: pain interferes with sleep, and inadequate sleep can make coping with pain even harder.

Gentle approaches may help some people, including carefully paced movement, comfortable positioning, relaxation techniques, or heat when appropriate. But there is no single solution that works for everyone, and anything that noticeably worsens symptoms should be reconsidered.

Most importantly, having fibromyalgia does not mean every episode of neck pain is automatically caused by fibromyalgia. New or severe pain, pain following an injury, progressive weakness or numbness, fever, or other concerning symptoms should be medically evaluated.

Sometimes people hear “fibromyalgia” and assume the pain is exaggerated because they cannot see an injury.

But invisible does not mean imaginary.

The person quietly rotating their shoulders during a conversation may be trying to manage an ache that has followed them from the moment they opened their eyes.

Does neck and shoulder pain affect your sleep or daily routine during a fibromyalgia flare, and what helps you feel more comfortable?

05/09/2026

When Every Breath Feels Harder: Fibromyalgia, Dryness, and the Symptoms We Shouldn’t Ignore

Living with fibromyalgia can sometimes feel like collecting symptoms you never expected.

One day, widespread pain takes center stage. Another day, overwhelming fatigue makes getting through normal responsibilities difficult. Then you may notice something completely different—a dry nose, irritated throat, stuffiness, or the uncomfortable sensation that breathing simply doesn't feel as easy as it normally does.

It can be tempting to connect every new symptom directly to fibromyalgia, but the picture is often more complicated.

Some people with fibromyalgia report dryness involving the mouth, eyes, or nasal passages. However, dryness can have many possible explanations, including medications, allergies, dehydration, environmental conditions, or another health problem. Fibromyalgia itself is primarily recognized for widespread pain, fatigue, sleep disturbance, and cognitive symptoms rather than as a condition that directly damages the lungs or nasal passages.

That's why new or persistent breathing difficulty should never automatically be dismissed as “just fibromyalgia.”

Shortness of breath, nasal obstruction, chest discomfort, or other respiratory symptoms may have causes unrelated to fibromyalgia and deserve appropriate medical attention—especially if symptoms are sudden, severe, worsening, or accompanied by chest pain, fainting, or significant difficulty breathing.

Living with a chronic illness often means learning an important balance: understanding your usual symptoms while remaining attentive when your body begins behaving differently.

You know your everyday baseline better than anyone. When something feels noticeably different, speaking up matters.

Chronic illness awareness isn't about assuming every symptom has the same cause. It's about listening carefully to the body, asking questions, and seeking appropriate care when something changes.

If you live with fibromyalgia, have you experienced unusual nasal, mouth, or eye dryness—and what has helped you manage it?

04/09/2026

When Even a Gentle Touch Hurts

Imagine getting dressed in the morning and feeling your shirt against your skin as if it were painfully rough. A hug that should feel comforting becomes uncomfortable. You finally lie down to rest, yet even the pressure of the mattress or blanket feels like too much.

For some people living with fibromyalgia, this can be part of everyday life.

One possible explanation is allodynia—pain triggered by something that normally wouldn't be painful, such as light touch, clothing, or mild pressure. Fibromyalgia involves changes in how the nervous system processes pain signals, which can leave some people unusually sensitive to sensations others barely notice.

That's why saying, “But I barely touched you,” doesn't necessarily describe what the other person actually felt.

The difficult part is that this sensitivity can interfere with ordinary moments. Choosing clothes may become about comfort rather than appearance. Physical affection may need to be gentler. Sitting in one position for too long can become uncomfortable, while getting restful sleep may be challenging when the body already feels hypersensitive.

Symptoms also vary. Not everyone with fibromyalgia experiences allodynia, and sensitivity can change from one day to another. New, severe, or unexplained pain should also be discussed with a healthcare professional rather than automatically attributed to fibromyalgia.

The image carries a powerful message: chronic pain isn't always about doing something strenuous. Sometimes simply existing in your own body can feel exhausting.

And when someone says that clothing, touch, or even resting hurts, what they may need most isn't skepticism or comparison. They may simply need to be heard.

Have you ever experienced a time when ordinary touch or clothing became surprisingly painful because of fibromyalgia?

03/09/2026

When Your Own Skin Won’t Let You Forget It’s There

She promised herself she wouldn’t scratch again.

But the itching returned.

First came the dryness—a tight, uncomfortable feeling that made her constantly aware of her skin. Then came the irritation. She scratched without thinking, felt relief for a few seconds, and soon noticed another red mark.

By bedtime, she wasn’t only uncomfortable. She was frustrated.

For some people living with fibromyalgia, skin-related symptoms and heightened sensory sensitivity can add another difficult layer to everyday life. People may report itching, burning, tingling, tenderness, or unusual sensitivity to touch. Dry skin itself can also itch, and repeated scratching can further irritate or damage the skin.

What seems minor to someone else can become exhausting when it happens repeatedly.

Imagine trying to sleep while your skin keeps demanding attention. Imagine clothing rubbing against an already sensitive area. Imagine concentrating on work or enjoying a conversation while resisting the urge to scratch.

Over time, that constant discomfort can affect more than the skin. Persistent symptoms can interfere with sleep, concentration, mood, confidence, and the ability to relax. When chronic pain and fatigue are already present, one more source of discomfort can feel enormous.

But there is an important reminder: not every rash, itch, dry patch, or area of redness is caused by fibromyalgia.

Allergies, eczema, medication reactions, infections, environmental irritation, and many other conditions can cause skin symptoms. New, severe, spreading, persistent, or unexplained changes deserve appropriate medical evaluation rather than automatically being labeled “fibro skin.”

Sometimes chronic illness means learning the difference between a familiar sensitivity and a symptom that needs another look.

And sometimes the hardest part isn't the scratching itself—it’s the emotional exhaustion of dealing with one more sensation your body refuses to ignore.

If you live with fibromyalgia, do you experience itching, dryness, burning, or unusually sensitive skin during your difficult days?

02/09/2026

Awareness Turns Isolation Into Connection

Chronic illness can make a crowded room feel incredibly lonely.

You may be surrounded by people and still feel as though nobody truly understands what it means to wake up exhausted, manage persistent pain, cancel plans you genuinely wanted to attend, or smile while your body is quietly asking you to stop.

That is exactly why awareness matters.

Speaking openly about chronic illness isn't about asking for sympathy. It is about creating understanding and helping people realize that many serious struggles aren't immediately visible. It is also about helping someone who feels isolated discover something incredibly powerful: “There are other people who understand this.”

Connection can change the experience of chronic illness.

Sometimes it happens when someone shares their story and another person replies, “This happens to me too.” Sometimes it's a friend learning why plans have to change at the last minute. Sometimes it's an online community exchanging practical ideas, encouragement, and the reassurance that difficult days don't have to be faced completely alone.

Awareness also reminds us to listen before making assumptions.

A person doesn't need to look sick to be struggling. They don't need to explain every symptom to deserve patience. And needing support doesn't make someone less capable, valuable, or determined.

Every honest conversation can make chronic illness a little less invisible.

Every shared experience can help another person feel recognized.

And every moment of understanding can strengthen a community where people support one another instead of suffering silently.

We may not be able to remove another person's illness, but we can make sure they don't feel forgotten while living with it.

What is one thing you wish more people understood about living with chronic illness?

01/09/2026

When Every Step Feels Bigger Than It Looks

She stood at the bottom of the stairs and stared upward.

Only a few steps.

On another day, she might have climbed them without thinking. Today, her hip was aching before she even lifted her foot.

One step brought a deep soreness. The next made her shift her weight. By the time she reached the top, she wasn’t thinking about where she was going anymore—she was thinking about how much energy it would take to come back down.

That is something people living with chronic pain understand: small movements can become enormous tasks.

Hip pain can affect far more than walking. Standing at the kitchen counter, bending to pick something up, getting out of a chair, climbing stairs, turning in bed, or simply remaining in one position for too long can become exhausting.

For some people with fibromyalgia, pain and tenderness may be felt around the hips and surrounding muscles. Fibromyalgia can also involve fatigue, stiffness, sleep problems, and increased sensitivity to pain, potentially making everyday movement feel much harder during a flare.

But hip pain should not automatically be blamed on fibromyalgia.

The hip is a complex area, and pain can have many causes, including bursitis, tendon problems, arthritis, injuries, referred pain from the back, and other conditions. New, severe, persistent, or worsening hip pain—especially after a fall or when accompanied by significant weakness, swelling, fever, or an inability to bear weight—deserves medical evaluation.

Living with chronic pain often means learning to pace yourself before your body forces you to stop.

Maybe you take the elevator instead of the stairs. Maybe you sit while preparing dinner. Maybe you break one large task into several smaller ones.

Those choices aren't laziness.

They are adaptations.

Someone watching may see you taking ten ordinary steps.

They may never know that your body experienced every single one as a negotiation between pain, fatigue, and determination.

So celebrate the small victories too.

Sometimes getting across the room really is an achievement.

Does hip pain make walking, standing, bending, or climbing stairs difficult for you—and which everyday movement challenges you the most?

31/08/2026

The Shame of Invisible Illness Is a Burden No One Should Have to Carry

Living with an invisible illness can create a painful contradiction: you may look well on the outside while dealing with symptoms that profoundly affect your life.

For people living with conditions such as fibromyalgia, chronic pain and other illnesses that aren't immediately visible, that disconnect can bring embarrassment, guilt, isolation and even shame. You may feel pressure to explain why you canceled plans, need more rest, can't work at the same pace, or struggle with something others consider easy.

But symptoms don't become less significant simply because another person can't see them.

Carrie Ann Inaba has spoken publicly about living with chronic health challenges and the emotional experience surrounding invisible illness. Her words highlight something many people recognize: sometimes the burden isn't only the symptoms themselves—it's also feeling that you have to continually prove that you're struggling.

No one should have to perform wellness for other people's comfort.

More understanding of invisible illness means making room for experiences we can't immediately see, listening without rushing to judgment, and recognizing that someone's capacity can change from one day to the next.

Have you ever felt ashamed or guilty because other people couldn't see what you were going through?

Dear Fibromyalgia

09/09/2026

08/09/2026

07/09/2026

06/09/2026

05/09/2026

04/09/2026

03/09/2026

02/09/2026

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31/08/2026

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