I thought this would be a good topic to write about because when I was first suffering with symptoms of Guillain-Barre Syndrome I did what most other desperate people in pain do, I googled it. Since the first symptom I noticed was severe lower back pain that’s what I focused on. Lots of conditions came up like sciatica, a trapped nerve, anxiety, repetitive strain injury, but not Guillain-Barre Syndrome.
The very first sign that something was wrong was a sudden and very painful sore throat. It developed whilst I was on holiday abroad and I immediately put it down to the fact I had been sleeping under a fan because it does sometimes happen with me. It was much more severe than the usual run of the mill sore throat but it came as quickly as it went and after a few days I was back home and I felt fine. I should mention that maybe a week before my holiday I had been in a bit of a panic because my period was unusually late (by around a week) although I’m not entirely sure that was connected to later events but still it’s worth mentioning. I had also been bitten by a mosquito whilst on holiday (as I frequently am) and again this may or may not be connected. I know Guillain-Barre Syndrome has been reportedly linked to Zika virus which can be passed on through mosquito bites.
So fast forward 2 weeks and I’d had no other causes for concern so far as I remember. I had returned to work after my holiday and continued life as normal. Then all of a sudden I woke one morning with a slight pain in my back, as if I’d perhaps slept funny on it. Over the next few days the back pain didn’t improve, in fact it was getting worse. Bad enough for me to visit the doctor and take time off work. The doctor assumed I’d pulled it maybe lifting something heavy. I assured him that I’d not lifted anything out of the ordinary but regardless he sent me on my way with some prescription pain killers. I wasn’t convinced that he’d solved the mystery but what could i do? I started taking the painkillers but the pain continued to worsen.
A few days passed and I began to notice my legs were becoming very tired and weak. The back pain was relentless too. It was out of hours so I called the emergency doctor. Something didn’t feel quite right and I was sure the doctor had the diagnosis wrong. The emergency doctor sent an ambulance to my home. The paramedics were puzzled as to why I seemed in so much pain and were concerned that perhaps the prescription pain killers were causing my leg weakness because that was listed as a side effect on the packet. I was taken to the hospital and instructed not to take any more of those pain killers. I was given new pain relief medication and sent home.
Over the next day or two the back pain continued to worsen and my legs continued to weaken. I was so desperate to resolve the back pain that I attended a private chiropractor appointment. She thought maybe it was a trapped nerve but none of the methods she was using to resolve it were working. She did comment that never before had she seen a patient having such difficulty holding themselves up and walking as poorly as I was. I went home disheartened and feeling desperate to resolve things.
At home the back pain worsened to the point I was unable to sleep for more than 30-45 minutes at a time. My Dad at this point had moved into my home because I was unable to manage for myself. During the night I was pacing around my bedroom (fighting against my weakened legs) trying desperately to ease the back pain. It was excruciating, by far the worst pain I’d ever experienced. My Dad said he felt like I’d been in labour for days on end! It must have been very distressing for him to watch. All this was happening so quickly I was frightened for what was next. The pain had overwhelmed me and I couldn’t cope with it any longer. I rang the emergency doctor and again the ambulance arrived. The paramedics once again puzzled with my symptoms. What was most concerning to them was my pain score. I rated it an 8-9/10. They were sufficiently concerned to put me in the ambulance and take me back to hospital.
At the hospital numerous doctors examined me. One after the other, all seemingly with no clue as to what was going on with me. The doctors questioned had I noticed any other symptoms other than leg weakness and severe back pain. Had I had any toilet issues? Actually, yes I had. I’d noticed things down there seemed a little numb and tingly when I was wiping. I hadn’t really been concerned, I just thought it was because of my back problem. My arms also had weakened and when they examined me I couldn’t lift them very high. Then they asked me to smile and frown. I hadn’t noticed but one side of my face was becoming paralysed. When I frowned there were no creases on one side of my forehead. When I smiled, one side of my mouth didn’t smile as wide as the other. Something was very wrong.
Luckily for me there was a neurology specialist from a bigger hospital present that day examining another patient. He was called in to see me because the other doctors were unsure what to do with me. He knew straight away what was wrong. He’d seen it before. Guillain-Barre Syndrome.
The second those words came out of his mouth my entire world changed. I was kept in hospital for 10 days and given regular doses of morphine throughout the day and night to help with the pain along with a 5 day course of IVIG to help me rebuild my immune system. I was very lucky that my breathing remained unaffected so my stay in hospital was short compared to some. Three years later and I’m still recovering. I’m left with many residual pains and weaknesses that affect my everyday life. Online information doesn’t seem to be widely available regarding the long term effects of the illness. I’ve had to learn, mainly from speaking to other fellow sufferers that it’s extremely common to not make a full recovery.
Guillain-Barre Syndrome is a rapidly developing auto-immune disease and can be life threatening, so it’s very important to be aware of the symptoms and seek medical help immediately. The symptoms that I experienced are as follows:
A recent history of a respiratory infection (this can also be a stomach illness).
Intense lower back pain that worsens at night.
Leg weakness and difficulty walking.
Limited movement of the arms.
Numbness and tingling of the limbs and nether region.
Loss of normal movement of the face (it may be difficult to eat or drink).
I hope in sharing my story that it may help to speed up diagnosis or at least encourage someone to seek immediate medical help if they are experiencing these type of symptoms. Statistics suggest that this illness may affect only 1 in every 100,000 people per year. Awareness is vital to ensure a speedy diagnosis and to give the best chance of a full recovery.
I have written a seperate post titled 10 things I wish I knew about life after Guillain-Barre Syndrome should you wish to read about the residual symptoms I am still dealing with.
Thankyou for reading.