Christine has been experiencing mysterious chronic pain since she was a teenager. It feels like her joints are grinding across each other, occasionally locking up so she cannot move. A few years ago her hip locked up in the middle of the night so she went to the emergency room. Doctors brushed off her pain as sciatica, telling her to go home and ice her hip. When that didn’t help she sought out a primary care provider to dig deeper. Although this may seem like a normal next step, for Christine it was a huge leap.
During her childhood, Christine’s mother did not trust doctors and did not allow her daughter to seek medical care unless it was an extreme emergency. This meant that Christine did not have her own primary care provider until she was 24 years old. An added difficulty is that Christine no longer has any blood relatives she can ask about medical history. She has done her best to piece her history together, but there are huge gaps in her knowledge.
In this episode of the Major Pain podcast, Christine discusses her diagnostic journey so far. Her care team has discovered that she has unusually progressive osteoarthritis for her age, leading them to believe there may be an underlying condition affecting her body. She is now exploring the possibility that she may have Ehlers-Danlos syndrome (EDS), since she experiences hypermobility, translucent skin and heart-rate spikes after standing. Although there are days her health gets her down, she reminds herself that one bad day does not equal a bad life, and continues to advocate for answers.
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