Chronic Pain and Painsomnia The Never-Ending Series No One Asked For

Ah, chronic pain—like that one medical TV series you thought would be a limited-run drama, but somehow it’s dragging into its 17th season, with no signs of cancellation and an increasingly absurd plot. Except instead of shocking cliffhangers or a dramatic love triangle, you get:

• Doctors who don’t believe you

• Pain that changes location like it’s trying to avoid capture

• And the thrilling possibility of being mistaken for a drug seeker

No credits, no payoff, just you and your heating pad co-starring in a medical mystery that no one seems keen to solve.

If you’re living with chronic pain—really living with it—you’ll know it’s not just about the physical sensation. It’s the mental strain, the constant self-doubt, the logistical nightmare of managing appointments and side effects, and the slow, creeping erosion of who you thought you were. I’m not telling you anything new—but maybe I can help you feel a little more seen.

So let’s talk about what actually helps, what’s total nonsense, and how to survive a healthcare system that sometimes treats your suffering like a bad attitude.

Your Pain Is Real (Even When No One Believes You)

Let’s start with the bit I wish someone had said to me in Year One: Your pain is real. Period. End of sentence.

It doesn’t need to show up on a scan to be valid. You don’t need a visible bruise, a walking aid, or a doctor's note stapled to your forehead. If you say it hurts, it hurts. And yet—when you live in a body that doesn’t “perform” illness in ways others expect, the burden of proof gets dumped on you.

I remember once rating my pain at a 6 and getting that look—you know the one, where the doctor quietly questions your entire reality. But when pain becomes your default, your tolerance shifts. What someone else might call “emergency-level” pain, you start calling “Tuesday.”

You are not exaggerating. You are adapting.

Learning the Language of Pain (aka: Medical Charades)

I had no idea how important it was to describe my pain clearly—until I didn’t, and things got missed. Turns out, if you say “it really hurts” in five different tones, that doesn’t count as clinical data.

Pain scales feel laughable when you’re in it every day, but they can help bridge the gap between how it feels and how it’s understood. Here are the most common ones I’ve run into:

• Numerical Rating Scale (NRS): 0 to 10. For me, 0 is winning the lottery and 10 is “emergency room but make it casual.”

• Verbal Descriptor Scale (VDS): Mild, moderate, severe, “somewhere between a migraine and being hit by a lorry.”

• Visual Analogue Scale (VAS): A line you point to. Great when even speaking feels like a marathon. (NHS guide to pain scales)

Keeping a pain diary has honestly been one of the best tools I’ve used—not just for doctors, but for myself. It lets me spot patterns I wouldn’t otherwise notice, and more importantly, it reminds me I’m not imagining things.

Pain Management: Not Just Leaflets and “Have You Tried Yoga?”

Raise your hand if you’ve ever been handed a wellness brochure when what you needed was actual intervention. Yep. Same.

Some GPs still treat pain like it’s a phase or a character flaw, but thankfully, there are better approaches—when you can access them.

Here’s what actual pain management should include:

• A full pain assessment: Not just “Where does it hurt?” but When? How? What makes it worse? Sometimes they even ask what it feels like emotionally, which felt weird the first time but—turns out—it’s relevant.

• Physical therapies: I know. Exercise sounds laughable when walking to the loo feels like a triathlon. But gentle, guided movement can prevent things from seizing up entirely.

• Psychological support: I resisted CBT at first—like, what was it going to do, teach me to think the pain away? But it’s not about that. It’s about rewiring how your brain reacts to pain, reducing how much space it takes up in your head.

• Complementary therapies: I’ve had some relief from TENS machines, heat pads, and the occasional acupuncture session. Not cures. But sometimes “a bit better” is enough to get through the day.

• Self-management strategies: Pacing, planning, prioritising. You become part project manager, part detective, part fortune teller. (NHS Pain Management Programmes)

  
  

Enter: Painsomnia, the Midnight Masquerade of Misery

Ah yes, painsomnia — because pain wasn’t content with ruining your mornings, it had to go for the full 24-hour takeover. It’s insomnia caused by chronic pain. And yes, it’s as fun as it sounds.

What is painsomnia? It’s when your body wants to sleep but your pain didn’t get the memo. You’re exhausted but can’t get comfortable. You fall asleep, then wake up every hour. Or worse, you don’t fall asleep at all because your knees have started hosting a rave.

Why does it happen?

• Pain perception increases at night when distractions fade

• Your body can't find a restful position

• Cortisol and inflammation have their own evil little circadian rhythms

• You spiral into anxiety because sleep won’t come, which… also keeps you awake

What can help (and what’s a placebo in a robe)?

• Positioning tools: Body pillows, wedge supports, and bolsters

• Magnesium sprays or gentle topicals: Not miracle cures, but helpful

• Gentle heat therapy or TENS units before bed

• Distraction: Audiobooks, low-stimulation podcasts, white noise

• Low-dose sleep aids (when appropriate): Under medical supervision

• Routine & wind-down rituals: Not glamorous, but essential

Still wide awake at 3AM, glaring at the ceiling like it owes you money? You’re not alone. Painsomnia affects countless people with conditions like EDS, fibromyalgia, arthritis, and more. Track it. Acknowledge it. And yes, complain about it—because you’re allowed to. (Source: Healthline on Painsomnia)

When to Stop Saying “I’ll Be Fine” (Even If That’s Your Default Setting)

“I’ll be fine” is the unofficial catchphrase of every chronically ill person I know. But sometimes, it’s not fine. Sometimes it’s a red flag—and pretending otherwise isn’t strength, it’s survival mode. I’ve done it. You’ve probably done it too. Let’s stop doing it when it really matters.

Signs you should absolutely seek medical help:

• Sudden pain that doesn’t feel like your “usual"

• Swelling, redness or heat in a limb (possible blood clot)

• Loss of bladder or bowel control (yep, call someone)

• Pain with fever or confusion (could be an infection or worse)(Mayo Clinic: When Pain Is a Medical Emergency)

  
  

The Mental Side of Chronic Pain: The Bit No One Warned Me About

Living with pain 24/7? It messes with your head.

There were days I couldn’t tell where my pain ended and my thoughts began. Days I wondered if I was broken, or weak, or making it worse by thinking about it too much. But here’s what I’ve learned: chronic pain is a mental health issue too.

The NHS recommends therapy and support groups—and while it’s not always easy to find the right one, when you do? Game-changing.

What’s helped me:

• Journaling: Even if no one else reads it, I do. And it reminds me I’m surviving things most people couldn’t name.

• Distraction: Hyperfocus on a TV show? Ten-part documentary? That weird rabbit hole on YouTube? Sometimes distraction is mercy.

• Peer support: No one understands like someone who’s been there. It’s not about fixing each other—it’s about recognition. (Mind UK: Chronic Pain & Mental Health)

  
  

Final Thoughts: Chronic Pain Is Real—And So Are You

Let me say it again for the people in the back: You are not faking. You are not being dramatic. You are not broken.

You are doing your best in a body that is asking more from you than most people will ever understand. And you’re still here. Still showing up. Still searching for answers—even if some days, that just means getting out of bed or texting a friend.

So track your symptoms. Ask the hard questions. Demand care that respects your reality. And if you need to scream into a pillow or name your heating pad after a pet—do that too.

I’m not here to tell you it gets easier. But I am here to remind you: you’re not alone in this.

Now, if you’ll excuse me, I’m off to glare at my meds cabinet like it personally offended me. Again.

Resources & Links:

• NHS – Ways to Manage Chronic Pain

• Mind UK – Chronic Pain & Mental Health

• Versus Arthritis – Pain Management

• Mayo Clinic – When to Seek Help for Pain

• Healthline – What Is Painsomnia?

• NHS Pain Management Programmes