A little-known disease left me trapped inside my own body

A woman has shared her harrowing experience of feeling “trapped inside her own body” after being afflicted by a perplexing and rare illness that initially left doctors puzzled.

Rebecca Louise Love was eventually diagnosed with Guillain–Barré syndrome, a severe condition that targets the nerves. This syndrome can affect sensory perception, movement, and vital functions such as breathing and heartbeat.

This condition typically begins by attacking the arms and legs before it extends to other areas of the body.

The 29-year-old mother of two and makeup artist from the UK first noticed an unusual sensation, akin to pins and needles, in her feet. This persisted for about a week before she recognized a noticeable decline in her strength.

Rebecca described her struggle; she found herself unable to rise from the sofa, had difficulty getting out of the bath, endured intense pain in her back and pelvis, and eventually faced challenges even with walking.

Seeking answers, she visited the emergency room but was discharged after a few hours without any concrete diagnosis or solutions.

But one day later, she said the pain became so severe she ‘could not move at all.’

‘I went to [the emergency room], had a few tests taken, and after several hours I was sent home,’ Rebecca told NeedToKnow recently.

Rebecca Louise Love was diagnosed with Guillain–Barré syndrome, a serious condition that affects the nerves, senses, movement and essential functions like breathing and heartbeat

Rebecca Louise Love was diagnosed with Guillain–Barré syndrome, a serious condition that affects the nerves, senses, movement and essential functions like breathing and heartbeat

She had to spend eight weeks in the hospital after the disease left her unable to walk and with difficulty breathing and swallowing

She had to spend eight weeks in the hospital after the disease left her unable to walk and with difficulty breathing and swallowing

‘The following day, I called my [doctor], and they prescribed me a couple of painkillers and said if the pain persists after four weeks, to call them again.

‘The [next] day, when I woke up in the morning, I could not move at all, and every time I tried to, it was pain as I’ve never felt before.

‘I ended up calling an ambulance, and that’s when I was admitted to the hospital.’

Once she was admitted to the hospital, Love’s condition worsened rapidly.

‘I was unable to sit up or move my arms or legs,’ she recalled. ‘My children would come to visit and hug me, and I couldn’t even hug them back.

‘They gave me a lumbar puncture, which, in all honesty, I can’t even remember because I was in so much pain.’

Soon, her face became paralyzed, leaving her ‘barely’ able to talk.

Her vision became blurred and she struggled to breathe and swallow food or water, so she was moved to the ICU.

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Rare Neurological Disorder Leaves Patient Trapped in an Unseen Prison

‘I was unable to sit up or move my arms or legs,’ she recalled. ‘My children would come to visit and hug me, and I couldn’t even hug them back’

She had to relearn how to stand and walk again, and ultimately spent eight weeks in the hospital recovering before she finally went home

She had to relearn how to stand and walk again, and ultimately spent eight weeks in the hospital recovering before she finally went home

‘Because I was unable to swallow, I had a feeding tube fitted and was taken off fluids,’ she revealed.

‘My breathing was getting worse, and I was put on oxygen, and if it was to continue, they were potentially going to have to put me [into a medically induced coma].’

Love was ultimately diagnosed with Guillain–Barré syndrome and started treatment using immunoglobulin therapy.

According to MayoClinic, it’s a ‘condition in which the body’s immune system attacks the nerves’ and cause weakness, numbness or paralysis.

The exact cause is not known and while there is no known cure, several treatment options can ease symptoms and help speed recovery, per the publication.

Recovery was slow for Love, with each step becoming a huge milestone.

She said: ‘I still could not close my eyes or blink or smile. I also couldn’t move my mouth or my legs and arms.

‘My symptoms were similar to those associated with having a stroke. Eventually, I was able to use my hands first, but felt like I had dinosaur arms.

The exact cause for Guillain–Barré syndrome is not known and while there is no known cure, several treatment options can ease symptoms and help speed recovery

The exact cause for Guillain–Barré syndrome is not known and while there is no known cure, several treatment options can ease symptoms and help speed recovery

‘Everything was a struggle … but with the help of the physio team, once I was learning to accept what was happening to me, I started to gain confidence and a little strength, despite how much muscle had deteriorated.

‘Each week felt like a huge milestone, and seeing myself do things again felt amazing.’

She had to relearn how to stand and walk again, and ultimately spent eight weeks in the hospital recovering before she finally went home. 

‘I’ve tried to push myself to get my independence back. I am not my “normal” self as I still struggle with some daily tasks, have pain often and still can’t feel my feet properly as there’s constant pins and needles,’ she concluded.

‘But at least I can walk again, I have appointments to attend still, and it may be a long process until I am my full self again, but it’s taught me so much about myself and life, and I know now to 100 percent listen to my body.’

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