This woman thought she had a common cold—you won’t believe what doctors found inside her head!
- Replies 0
Imagine feeling so exhausted that even standing up becomes a challenge. That’s how Amy Wood, a former fashion buyer and the life of the party, felt when she started experiencing extreme fatigue.
What she thought was just a common cold soon spiraled into something far more terrifying—and the shocking diagnosis she received would completely change the course of her life.
This is the story of how a simple viral infection turned into a medical mystery that no one saw coming.
Trust us, you won’t believe what doctors found inside her head!
From a "Common Cold" to a Rare Diagnosis
In 2017, Amy’s life changed when her daughter Willow brought home glandular fever from nursery.
While Willow bounced back quickly, Amy, then 31, found herself facing an exhausting battle with extreme fatigue that never seemed to end.
She describes it as a level of exhaustion she never thought possible—her heart racing with the simplest movements and her legs giving out after standing for only minutes.
Weeks turned to months, and Amy’s condition only worsened. She found herself crawling to her daughter’s room at night, too weak to walk, and felt trapped in a constant haze of exhaustion that kept her bedridden, far from the active life she once led.
Seeking Answers Beyond Chronic Fatigue Syndrome
Amy was first diagnosed with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS)—a condition notorious for causing overwhelming tiredness.
But this diagnosis didn’t seem to explain the severity of her symptoms.
So, determined to find out what was really going on, she traveled to Barcelona in 2022, where a specialist delivered the surprising news: craniocervical instability (CCI), a rare condition where the skull isn’t securely attached to the spine.
The Road to Recovery: A Costly and Complex Path
Treating CCI isn’t simple or cheap. Amy was faced with the possibility of “brutal” surgeries or costly stem cell injections. Surgery in Spain would set her back nearly $100,000, while in the US, it could reach $250,000.
To make matters more complicated, Amy also needs an operation to release her tethered spinal cord, which could cost between £17,000 and £20,000.
But despite the financial strain and physical toll, Amy remains determined. In 2023, she launched her own clothing brand, Not Dead Apparel, featuring witty slogans that capture her sense of humor.
Phrases like “Tired Girl’s Club,” “Live. Laugh. Lie Down,” and “Wish You Weren’t Here” appear on caps, t-shirts, jumpers, and bags, reflecting both her journey and her lighthearted spirit.
Fighting Social Isolation and Losing Herself
Perhaps the hardest part of Amy’s condition is the social isolation it brings. “I used to be the life and soul of the party,” she shared, lamenting how her illness has disconnected her from her vibrant former self.
Beyond her health, this condition has stolen her sense of identity. To help ease the emotional and financial burden, Amy has set up a GoFundMe page to cover her medical expenses. She’s also using the profits from her brand to fund her surgery costs.
Amy’s journey is a stark reminder of the unpredictable nature of health, the importance of self-advocacy, and the incredible strength of the human spirit.
Her story—from misdiagnosis to discovering a rare, life-altering condition—underscores the need to seek second opinions and never stop searching for answers when something doesn’t feel right.
Amy's story is a powerful testament to strength in adversity and the creativity born from struggle. Have you or someone you know faced a journey of misdiagnosis and discovery? Share your experiences and strategies for coping with chronic conditions in the comments below!
What she thought was just a common cold soon spiraled into something far more terrifying—and the shocking diagnosis she received would completely change the course of her life.
This is the story of how a simple viral infection turned into a medical mystery that no one saw coming.
Trust us, you won’t believe what doctors found inside her head!
What seemed like a harmless cold revealed a rare and life-altering condition. Image Source: Pexels / Anna Shvets.
From a "Common Cold" to a Rare Diagnosis
In 2017, Amy’s life changed when her daughter Willow brought home glandular fever from nursery.
While Willow bounced back quickly, Amy, then 31, found herself facing an exhausting battle with extreme fatigue that never seemed to end.
She describes it as a level of exhaustion she never thought possible—her heart racing with the simplest movements and her legs giving out after standing for only minutes.
Weeks turned to months, and Amy’s condition only worsened. She found herself crawling to her daughter’s room at night, too weak to walk, and felt trapped in a constant haze of exhaustion that kept her bedridden, far from the active life she once led.
Amy Wood's journey from a misdiagnosed illness to uncovering a rare condition highlights her resilience and determination. Image Source: UNILAD / Amy Ironside Wood.
Seeking Answers Beyond Chronic Fatigue Syndrome
Amy was first diagnosed with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS)—a condition notorious for causing overwhelming tiredness.
But this diagnosis didn’t seem to explain the severity of her symptoms.
So, determined to find out what was really going on, she traveled to Barcelona in 2022, where a specialist delivered the surprising news: craniocervical instability (CCI), a rare condition where the skull isn’t securely attached to the spine.
The Road to Recovery: A Costly and Complex Path
Treating CCI isn’t simple or cheap. Amy was faced with the possibility of “brutal” surgeries or costly stem cell injections. Surgery in Spain would set her back nearly $100,000, while in the US, it could reach $250,000.
To make matters more complicated, Amy also needs an operation to release her tethered spinal cord, which could cost between £17,000 and £20,000.
Not Dead Apparel: Amy's creative way of turning adversity into style and support for her medical journey. Image Source: Not Dead Apparel Store.
But despite the financial strain and physical toll, Amy remains determined. In 2023, she launched her own clothing brand, Not Dead Apparel, featuring witty slogans that capture her sense of humor.
Phrases like “Tired Girl’s Club,” “Live. Laugh. Lie Down,” and “Wish You Weren’t Here” appear on caps, t-shirts, jumpers, and bags, reflecting both her journey and her lighthearted spirit.
Fighting Social Isolation and Losing Herself
Perhaps the hardest part of Amy’s condition is the social isolation it brings. “I used to be the life and soul of the party,” she shared, lamenting how her illness has disconnected her from her vibrant former self.
Beyond her health, this condition has stolen her sense of identity. To help ease the emotional and financial burden, Amy has set up a GoFundMe page to cover her medical expenses. She’s also using the profits from her brand to fund her surgery costs.
Amy’s journey is a stark reminder of the unpredictable nature of health, the importance of self-advocacy, and the incredible strength of the human spirit.
Her story—from misdiagnosis to discovering a rare, life-altering condition—underscores the need to seek second opinions and never stop searching for answers when something doesn’t feel right.
Amy's story is a powerful testament to strength in adversity and the creativity born from struggle. Have you or someone you know faced a journey of misdiagnosis and discovery? Share your experiences and strategies for coping with chronic conditions in the comments below!
