The undiagnosed disease is connected to severe muscle pain and affects the heart, according to the user, who shared their story on Reddit.
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A 25-year-old with a rare, undiagnosed neurological disease that keeps them from sleeping shared, “I don’t know how long I have, but can’t see myself making it more than a year.”
In a heartfelt post on Reddit’s Ask Me Anything (AMA) subreddit, user BPD-Recovery detailed their battle with a mysterious neurological disorder, which they likened to Fatal Familial Insomnia.
The Cleveland Clinic describes Fatal Familial Insomnia as “a rare genetic condition causing severe insomnia, memory loss, and involuntary muscle twitching, progressively worsening and life-threatening.”
The issues BPD-Recovery faces all originate from their spine.
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“I’ve had severe muscle pain since I was 16. It started like carpal tunnel syndrome but progressively worsened. Eventually, it was discovered all my muscle issues were stemming from my left shoulder,” they disclosed. That post garnered 11,000 upvotes and more than 1,600 comments.
BPD-Recovery continued, “Now, I cannot breathe normally due to muscle tension. My torso is slightly twisted away from my problem side. My spine causes my sleeplessness. When my back was better, and I could release it, my sleep would immediately resume.”
The Redditor revealed that two years ago, “my spine completely locked up, and I have not experienced normal sleep since.”
The user said that when they sleep, they will “Wake up. Extremely exhausted. Can barely move. Energy comes barely online around 3 p.m. Energy comes fully online around 7 p.m. Feel great then.”
Although their symptoms are similar to Fatal Familial Insomnia, they noted, “There is no name for my condition. I have progressively deteriorated over 2 years. It began with hallucinations, irritability, extreme mood swings, and exhaustion.”
“In the last four months, it’s begun affecting my heart,” the user added. “My nervous system is in bad shape. I have severe dysautonomia, meaning my heart and blood pressure vary erratically between extremely low and extremely high levels. I’ve been in and out of emergency rooms for borderline heart attacks around seven times in the past three months.”
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The struggles extend to cognition too, as they shared, “I have also had to bring people to talk to doctors because I was so delirious. I have been too tired to speak on hundreds of occasions.”
“I regularly zone out and stare at walls. I forget what I did 30 seconds prior. I literally microsleep while awake,” they admitted. “I have strained pasta onto my countertop, hit a parked car in my driveway, called people by the wrong names, forgotten basic words, and done things while saying, ‘don’t do xyz.’”
Although gabapentin (a neurosuppressant) helps marginally, the user admitted, “I am terrified of dying. The cardiac issues are recent, and I think I’m on my last leg.”
The Reddit thread was filled with compassionate commenters suggesting new treatment options—ranging from contacting specialists to trying new therapies—which may have provided BPD-Recovery with some hope.
