Fibromyalgia. The mysterious “made up” illness

This time of year is filled with spooky stories and mysteries, so let’s take a minute and talk about the mysterious illness that haunts you on a daily basis. You know the one I am talking about. That diagnosis you get when you have been to all of the specialists, run all of the tests, and still feel as though you don’t have any answers. That’s right, you have fibromyalgia.

Another doctor’s appointment

Another set of questions. What brings you in today? What is your pain score on a scale of 1-10? What is hurting? What have you been doing differently? Another opportunity to explain how you feel overwhelmed, in pain, out of control, and mentally foggy. Yet despite your best efforts to talk about how you are feeling, you are not being heard.

You are being told…

o   Your test results are normal

o   The x-rays are normal

o   You need to learn to live with it

o   It is all “in your head”

Going to the doctor can be overwhelming enough as it is. Rushing in, checking in, waiting. Finally, being rushed back to the exam room, weight check, blood pressure check, more waiting. You finally get your opportunity to see the provider. You have a list ready and know what you want to say. But you aren’t given the chance. You feel as though your concerns are strewn aside and you wonder if things are really “in your head”. Well trust me, they aren’t!

Fibromyalgia is not…

o   Imaginary

o   In your head

o   “Made up”

People with Fibromyalgia may experience…

o   The Startle Specter 💥 – Unpredictable symptoms that sneak up on you — pain, stiffness, dizziness, or exhaustion with no clear reason why. It’s like living in a haunted house where something’s always ready to jump out and say “boo.”Unpredictable symptoms (you may have good days and bad days)

o   The Energy Vampire 🧛‍♀️ – fatigue that drains your energy no matter how much you rest. Both physical and emotional exhaustion can go hand in hand with fibromyalgia.

o   The Fog Spell 🌫️ – cognitive difficulties (“fibro fog”) that make concentration vanish.

o   The Sleep Curse 💤 – nonrestorative sleep, insomnia, or disrupted rest, Sleep disturbances

o   The Phantom Pain 👻 – widespread pain without visible cause, known as musculoskeletal pain.

o   The Sensory Siren 🔮 – Heightened sensitivity to light, sound, touch, or even temperature changes. Bright lights sting, loud noises startle, and a simple hug might feel like sandpaper. 

Each of these “ghosts” might show up alone or bring friends, leaving you feeling like your own body is full of jump scares. The haunting is invisible — but the experience is all too real.

The Mystery No One Can See: Why Fibromyalgia Is So Misunderstood

Just because others may not be able to “see” your illness, does not mean that you are not suffering. When people do not understand your symptoms, this can impact your mood and emotions in a negative way.

The reality is…

o   Your nervous system plays a major role in fibromyalgia and how the pain signals in your brain are being processed

o   Small sensations can be overwhelming and painful

o   Your brain is sending pain signals more often and with more intensity than it should

Because your brain is sending more pain signals throughout your body you experience additional stress, depression, and anxiety. All of these can in turn increase your pain, creating a vicious cycle that seems impossible to break.

Facing the Fear: How to Take Back Control, what can you do?

o   Allow yourself some grace

o   Engage in self-care

o   Listen to your body and look for patterns

o   Gentle movement and stretching (small movements can make a big difference)

o   Prioritize rest and keep consistent sleep routines. Read more about therapy for insomnia here. 

o   Focus on connection and support (friends, family, online communities, therapy)

Ready to Stop Feeling Haunted by Pain?

While fibromyalgia may seem like a mountain that you are not prepared to climb, with the right support and connections, it can become manageable. Finding your community and having compassion with yourself can help you to lead a balanced, fulfilling life. Therapy can help to support you on your journey, as well as teach you skills to manage pain and stress. You don’t have to navigate this journey alone. Dr. Pimble specializes in therapy for chronic pain. Schedule a consult today!