My name is Lara-Jade, I am 26 years old and live in South Australia. In March 2013 I was diagnosed with Guillain-Barre Syndrome (GBS). It started off one day waking up with a cramping pain in my calf muscles.
Over a week, this worsened and I began to feel a tingling feeling in my legs as though they were asleep and it stared to become hard to walk. I presented to the hospital on two occasions, which ended with them sending me home and saying it was stress-related. I knew it wasn’t stress-related and that something was not right. Over the next week my mobility began to decrease and it started to become hard to breathe until one day, while getting out of the shower, my legs gave way and I collapsed, unable to get back up.
I was admitted to the Royal Adelaide Hospital emergency department and the neurology team there knew straight away what it was and diagnosed me with Guillain-Barre Syndrome (GBS).
GBS is a rare autoimmune disease (affects one in 100,000 people) where the immune system attacks the nervous system, destroying nerve linings which control the messages from the brain to the muscles to contract. They explained to me that the symptoms were going to get worse and that I was to be sent straight to ICU. Within hours, the paralysis from my feet had spread all the way to my chest.
I was unable to move my feet, legs and upper torso. There was an intense tingling sensation in my whole body and a severe aching pain all over and I began to struggle to breathe. I felt as if I wanted to be sick all the time. Luckily I was started on IVIG treatment immediately which would go for five days and IV injections to relieve the nausea.
The pain was so intense anything that touched my body would hurt, even the bed sheets on my toes would cause extreme pain. I was unable to sleep for days as there were nurses and doctors coming in and out to do all kinds of tests on me, including a lumbar puncture. At this point I thought I was not going to make it.
I remember being in the ICU for 2 1/2 weeks before finally being moved to the neurology ward where I stayed for a few days. Once in the neurology ward, although the pain had not gone ,I began to be able to move my legs and even sit myself into a chair. Due to this improvement, they sent me to a rehabilitation hospital where I stayed for three months.
During my time in the rehabilitation hospital, I was put on medication to help with the tingling sensation and aching pain. I continued the IVIG treatment once every two to four weeks which helped improve my mobility.
I considered this a “wonder drug” as I would rapidly improve a few days after the transfusions. I participated in rehabilitation activities every day including physiotherapy, hydrotherapy, occupational therapy, and gym. I learned to walk and do everyday tasks all over again. It felt like I had had everything taken away from me… From one day being so normal to not being able to sit, stand, walk, etc. In my head I still believed I could do these things. For example, being able to walk used to be such a simple task.
Things slowly and gradually started to improve, and then I relapsed back to being paralyzed from the chest down. I was devastated. Everything I had worked so hard for, and I had to do it all over again. At this point I was re-admitted back to the hospital where I was then diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP – affects one in 400,000 people). Unfortunately I relapsed about three to four times, but I was determined to be able to walk again. I was sent back and forth from the hospital to the rehabilitation hospital.
Every time I tried to explain to the doctors how I was feeling (e.g. pain, nausea, tingling, burning, or memory loss), they never seemed to understand. It was so hard to explain to friends and family because all anyone can ever see is that you look fine but inside you feel as though you are dying. I began to connect with a group of people online all over the world to gain more knowledge on my condition, and I believe this has been the only thing that has got me through the experiences. I don’t believe anyone will ever understand CIDP unless they have experienced it.
I pushed through and finally was sent home after four months in hospital. I am now able to walk and do most daily tasks. Unfortunately I still suffer from severe pain and continue my medications along with IVIG monthly. CIDP has had a huge impact on my life– and what I wouldn’t give to just feel normal again! There are good days and bad ones, and at times it gets frustrating and tearful. All we can do is have hope. I hope that the world can become more aware of this illness, so that we can get help to those who need it.