I’m 22 years old. Prior to the vaccine, I was on the way to becoming an amateur photographer whilst living on a sheep farm, which meant I did a lot of physical work. I also trained on the side with some weightlifting, as sheep aren’t light and I needed to be in peak performance to complete daily tasks. I was so busy that I didn’t have time for much else, and my health and fitness were perfect.
My intuition told me something wasn’t right about the vaccine, but because I lived in Victoria and was out on the farm, I was already isolated from society. With the restrictions in place, it meant I was even more isolated than usual. I also needed to attend my sister’s year-six graduation. These were the rules, and I love my siblings so much more than anyone can understand. I just wanted to be there for her.
I got the Pfizer vaccine on 29 October 2021 in my left arm. I didn’t feel anything immediately after, other than a sore arm. It wasn’t until about two hours later when I was food shopping with my mum when both of my hands started going stone cold. My mum held my hands and told me it was like touching a dead body. I knew something was wrong. We went straight home and I took one Panadol and one Nurofen, which the doctor told me to do if anything came up.
One-and-a-half hours later, I started feeling a pinching sensation in my left elbow. The pain was an eight out of ten, and my left hand started turning purple. I didn’t panic and I thought that this would pass, so I rested well into the evening and went to sleep as usual. The next day, I woke up and the purple colour had faded. I was fine the whole next day, but took it easy just in case.
It wasn’t until the next day that I woke up and both of my hands were a deep dark purple and feeling stone cold/numb. As you can imagine, I started to get a bit freaked out and my mum took me to the emergency department. On arrival, we spoke to the triage nurse and explained to her what had happened. I mentioned that I just had the vaccine, and she didn’t pay too much attention, but they took me in straight away. My mum wasn’t allowed to come in due to COVID restrictions, so I was alone the entire time.
They ran tests – bloods, an ultrasound and an ECG. The results came back clear, and the only thing they could do was start Googling. They openly admitted they had never seen anything like this before. I was given a very rough verbal diagnosis of Raynaud’s Syndrome, which is an autoimmune disorder related to Guillain-Barre syndrome (GBS). They didn’t really know how to treat me. They sent me home five hours later and told me if it got worse to come back.
I went home and the level of pain increased in my left hand, spreading into my right hand and later my feet. My feet started going numb to the point that I was unable to feel the ground. It was on this day that I got a headache I can only describe as a migraine in the back of my head and towards the upper part of my neck, which literally has not left, even nine months later. My hands also started to seize up and curl inwards like a claw, and then my hands started tremoring constantly like I had Parkinson’s disease. On top of all of this, the purple colour spread into all of my extremities, including my feet, starting with my toes. All of these symptoms appeared and increased over a 12-hour period.
The next day, I woke up and the colour of my extremities had deepened yet again. Now I was unable to walk or use any of my limbs without assistance. I couldn’t shower, I couldn’t eat, I couldn’t do anything, I was basically a baby again. The brain signals to my extremities weren’t working. Later that day, I started experiencing heart palpitations and a racing heart. It was time to go back to the emergency department.
On arrival, they wouldn’t allow my mum to come in with me once again because of the COVID “precautions”. But on arrival my mum told the triage nurse that this was from the vaccine. The nurse responded with silence. They took me in and ran tests – bloods, a stroke test, a urine test, blood pressure and a heart monitor. The results came back showing I had a very low iron level. Everything else came back clear, but they still admitted me overnight giving me Panadol and Nurofen every two hours to manage my pain, which didn’t help at all!
The next day, I woke up still in pain. They did the usual observations. Two medical doctors and one medical student came down and saw me. He stood there and told me that he wasn’t sure what was going on, and confidently said that I would be fine in a few weeks. My mum rang the hospital and enacted the Mental Health Act, and was then able to come into the hospital with me.
While my mum was sitting with me, the intern who stood with the doctor returned with my discharge papers. They stated, “Unknown neurological problem, recovery expected in a few weeks”. They let us use the wheelchair to escort ourselves, and we left empty-handed without answers.
We went home and my mum made an appointment with my GP. We saw him the next day – he suspected GBS (Guillain Barre syndrome), but also said he didn’t really know what was going on. He mentioned that I could be eligible for an exemption, and wrote down that I was injured by the Pfizer vaccine, but that I needed to see the neurologist first.
We were able to get in quite quickly and saw the neurologist in the same week. I was referred for a nerve conduction study, and at first, he was agreeing with the possible diagnosis of GBS. After the nerve conduction study was completed, he found a neurological deficit on my left-hand side. He admitted me under his care to hospital on the same day. They ran more tests and monitored me, as I still wasn’t able to walk. It had been five days at that stage.
I was given a pre-op form upon admission to the hospital. My mum took me up to the ward, where she was told to leave. The lumbar puncture was meant to be done on the Monday, but instead, she had a medical doctor come into the room on the Friday afternoon and they performed the lumbar puncture without informed consent.
The results came back clear, but we didn’t know this until Saturday morning. The lumbar puncture caused me so much pain. I was told by the treating doctor to drink caffeine, which we found quite strange considering my tremors hadn’t stopped. However, I took their advice, drinking up to six coffees a day and also taking one Panadol and one Nurofen hourly. The truth is, it made no difference at all, and my symptoms and pains were increasing slightly.
That afternoon, the neurologist came back to see me and informed me I was clear of GBS. He then went on to tell me I needed to talk to my subconscious and tell myself I was getting better. Yes, you read that right! I was in hospital for a total of five nights and six days, and I was given a diagnosis of FND (functional neurological disorder). I was told I was severely anaemic, which I have never had a problem with ever before. While I was in hospital, I wasn’t allowed to do anything without the assistance of nurses. I have to give credit to the three nurses who looked after me whenever I needed help going to the bathroom, showering, eating, and everything else.
Two days before I discharged myself, the medical doctor came to inform me that I was no longer able to receive help from the nurses. but the nurses challenged the doctor and told her straight that they were going to look after me, and ignored her request completely. I am extremely grateful for these nurses. If you’re reading this – thank you.
The next day, the medical doctor returned while my mum was present. My mum challenged the diagnosis of FND and explicitly asked what in the vaccine had caused this. The doctor responded that she did not have that information available and refused to talk anymore about the vaccine. We later saw the notes she had written, which stated that my mum was aggressive, which she wasn’t at all. She was just direct because things just weren’t adding up.
That same afternoon the neurological doctor came back and saw me. I questioned him, asking why I was turning purple, could it be blood clotting, and was my heart okay? His answer regarding the purple was, “It happens”. Regarding the blood clots, “It very well could be, but it’s safe”. And regarding the heart he just said, “It’s fine”. After a bout of questioning and it not going anywhere, he had the nerve to tell me I’m 21 and I’m his patient and I don’t need my mum there. I said in a very polite way, “My mum is the one taking care of me, and I know what’s best for me”. My brain fog had set in by that stage, and I was very forgetful without her. After the doctor left, the physio came to assess me on my mobility, and by the next day I had given up all hope that these people were interested in helping me, and I discharged myself.
I went home. Nothing had changed. I was still in a wheelchair and unable to walk, my pain was through the roof, I was losing sleep and it was getting hard to swallow, my appetite was diminishing, my energy levels were at an all-time low. The only pain relief I ever got was from my mum helping me into a hot bath. Despite everything I was going through, my mentals were okay. At least being home meant I was in a safe place. My tremors were still constant, and I couldn’t feel hot or cold through my whole body. My extremities were still purple and would darken if tried to use them. This went on every day for another two weeks before my mum and I booked in to see a new GP.
At first the GP listened, but she was taken aback a bit. She asked me to walk but could see that I couldn’t. She then checked where my headache was coming from by pressure points in the back of my skull, resulting in extreme pain in my eye sockets. At the end of the appointment, she diagnosed me with chronic regional pain syndrome (CRPS), but only in my left hand. She said that she wasn’t sure about anything else and referred me to a hand therapist and a cardiologist.
I saw the cardiologist first, and that was within the next two weeks. He ran tests – an ultrasound of the heart and left side of my chest. The results came back clear, and there was no follow-up appointment.
The hand therapist appointment was about a month later. We had to drive an hour-and-a-half to see this therapist. After explaining to her all my symptoms, she said, assuming we had a dam, which we do, “Get a walker like an old person, and go for a walk in the dam with the walker”. This made absolutely no sense to me. A person of this stature was telling me to grab a walker when I can’t use my hands, and to walk the walker through the muddy floor of the dam? Maybe suggest a pool at the very least!
She then went on to tell me that because I was 21 years old, I should be able to pull myself together and get organised regarding my injury and following up doctors and physio. This really threw me and I left feeling more frustrated and with more questions. I was feeling very angry and defeated on the way home.
It was later that week and we were now entering the end of the January 2022 school holidays. I had an appointment with a physiotherapist we had found of our own accord, and she was absolutely BRILLIANT! She has been excellent in finding exercises to help me with my walking, and is basically treating me like a stroke patient. She is gentle with me, but she also encourages me to keep on pushing myself.
Moving toward the end of May, I suddenly felt sick in the stomach and raced to the bathroom where I vomited quite a bit of blood. It scared the heck out of me. We raced to the emergency department. This was on Mother’s Day. On arrival, we had to tell them the gist of things and they pulled up my history. For the first time they showed sympathy towards me. They ran tests and bloods, did an ECG, did a heart rate blood pressure monitor test, and found that I was repeatedly going tachycardic and my blood pressure was going up and down. My resting heart rate reached 168 BPM, and my blood pressure was 124 over 90. They also tested me for COVID, and it came back negative. They weren’t sure why I was feeling sick, so they let me go home and said to return if I got worse. Two days later I did another COVID test and it came back positive. I didn’t feel too bad. It just felt like I had a mild flu.
It has now been six months of treatment, and I’m seeing minor improvements. I’m a bit more stable on my legs, and I’m not in the wheelchair as often. I’m able to use a walking stick. My mum has also been diligently researching my condition and started me on an anti-inflammatory and anti-histamine diet. We have been coordinating with a naturopath for the last two months to figure out what’s best for my body.
Currently, there are no answers, and my condition is ongoing. At my worst I was about 10% of my old self, and I’m currently sitting at about 45%. I still experience tremors, numbness in my left leg from my knee down and in both of my arms from the elbows down, I can’t feel hot or cold to the point that my mum has to dress me based on the weather forecast that day. My sleep has improved, but I have a constant pain in the lower part of my skull that connects to my spine, severe brain fog, my hands, knees and feet are still purple, I have extreme muscle atrophy, my hands look like skin and bone, and I’m visibly much thinner.
Since March, I’ve been losing my hair in clumps and my fingernails curl inwards when they grow out. My appetite comes and goes, I don’t remember to eat and it can be a struggle to swallow, which we think is neurological and connected to the vagus nerve. I also have minor noise sensitivity, vertigo-like symptoms, an erratic heartbeat and low blood pressure, minimal shortness of breath.
I’ve left this part of my story till last: From the very beginning, I’ve been experiencing irregular menstrual cycles. Sometimes it comes, and sometimes it doesn’t, sometimes it can be twice a month and when it does come, it comes heavy in the form of blood clots varying in size, the biggest being like the palm of my hand. Every time my period comes, it intensifies all of my symptoms, and I’m now feeling severe pain in my left ovary, which now has me worried about other issues to come, specifically infertility, which I’m yet to investigate.
It has been a long time trying to find the courage to come forward and share my extensive story. I did share a brief story with Gerard Rennick nine months ago. Because it was so early on, the reception wasn’t so welcome from the people who knew me and what I was experiencing – family, friends and strangers, many of whom do not believe that this has happened as a result of the vaccine. This has been disheartening to say the least, even though some of these people have known me my whole life.