I was previously a fit, happy and active 41-year-old mum. I have had a history of anxiety after difficult pregnancies, where I vomited 24/7 for most of the duration. I worked in disability care and advocacy. I had planned on further study last year, but have had to put that all on hold, because of what’s happening to me.
I would walk or cycle, three to five kilometres regularly, with no problems. The last few years I have had a weird ‘illness’ where I’d feel like I was getting a cold, but then come good after a couple of days. It would never really hit me and I just felt heavily fatigued and flu like. This happened a couple of times a year.
10th August 2021 I woke up after a stressful couple of months and had extreme fatigue, a dry cough, full body tremors, low BP, palpitations and cold sweats. Over the next six weeks I was extremely ill and rushed to hospital with breathing difficulties. I collapsed multiple times. Eventually one hospital did different blood tests, besides the standard ones. They couldn’t find anything wrong with me, except an extremely high ANA test (autoimmune test) of 1:2560 and reactive lymph nodes in my neck and armpits. These results were based on an ultrasound and CT scan. I could barely swallow. It felt like a piece of gravel in my throat. That’s how bad the lymph nodes were. My ENA and DSDNA (further autoimmune tests), were negative so they couldn’t figure out if I had an autoimmune condition, or which one, or if my body was just attacking itself for some reason.
I mostly recovered from this, after six weeks of being in bed or in hospital. I was barely even able to toilet or shower myself and I went from 53kg to 46kg. Mid October 2021, I had a check up with a specialist at the hospital, where I had previously been admitted. She believed I had a virus and post-viral fatigue. I never felt ‘sick’ though and had no temperature, runny nose or anything like that. I was discharged from the outpatients department, with advice to follow up the autoimmune bloods in a year and get the jab. I was told that because I have an autoimmune disease, it would make me more vulnerable to catching COVID.
I have children who have severe asthma and wanted to protect them too. I decided to get the first Pfizer jab in late October 2021 and had the second one in November 2021. Following the first jab, I felt mildly tired and a bit headachy for a day or so. I was relieved not having any temperature or sweats, because I knew a lot of people had suffered with this.
The morning of my second jab, I was recovering from a weird mild cold again. I had a very strange feeling telling me I should not be getting the second jab and to wait until I was better, but I brushed it aside and went ahead with it.
The next day I woke up absolutely fine, I was so relieved. It was a Saturday and I went grocery shopping with my husband at about 11.30am. Halfway through, I felt this wave of fatigue and heaviness wash over me. It was like the burnout ‘weird oncoming cold’ feeling. I spent the next two weeks in bed, with all the previous symptoms back. This included sweats, tremors and pins and needles in my limbs. I also had no appetite, palpitations, extreme fatigue and weakness. I kept thinking the previous weird illness was back and that maybe my immune system was not ready for the vaccine I have always had migraines at ovulation and period times. In the first eight days following my jab, I had four excruciating migraines, with pins and needles and a weird feeling in my head. The only way I can describe it is like when you lick a 9 volt battery, but with the ‘zingy’ feeling inside my skull, instead of on my tongue.
It is now 22nd August 2022 and this feeling still comes and goes, along with my other symptoms.
This next part is a bit of a diary.
Sunday 5th December 2021 I just did not feel right. I was chesty and took Ventolin. This resulted in an agitated state. I was coughing and dry retching as though I had phlegm that needed clearing. My husband called an ambulance. All the obs came back normal, except for a fast heartbeat, which they said was caused by the Ventolin. I was feeling terrible and the pins and needles were doing my head in. The ambulance advised me that the hospitals were diverting patients due to overcrowding. They told me it was best to stay home and see my GP the next day. The paramedic could hear weird, ‘indescribable’ noise in my lower left lung. That night I woke at 4am to go to the toilet and had bad pins and needles in my right leg. I collapsed on the floor because I couldn’t feel my right leg or hold myself up on it, but I could still move it. My right arm and hand had done this a few times overnight, when I got up to go to the toilet. My arm was just dangling with pins and needles and I couldn’t feel, or use it. I could no longer look after the kids, do any housework, barely even walk or hold a conversation.
6th December 2021, I saw my GP again. I spent a fair bit of time with her and she decided to send me for a lung function and respiratory test. I was also booked in for a brain MRI, due to the neurological symptoms and the increase in severity and frequency of migraines. She wanted to rule out MS. She’s also referred me to a rheumatologist because of my ANA results.
7th December 2021, I thought I was having a stroke. The right side of my face went completely numb. I couldn’t talk and my right leg was dead as well. I managed to call an ambulance and slur out what was happening. The same crew that had previously taken me to hospital a few times with the previous illness prior to the jab, turned up. They made me walk to the ambulance, ridiculing me the whole time. My heart rate was 144bpm laying down and I lost sensation in half my body. It took me ten minutes to get shoes on and walk about 10 metres. They were so horrible.
At the hospital they did a head CT scan, which showed nothing. They discharged me even though my blood pressure was 94/45 and I could barely walk.
10th December I had brain MRI. The results were all clear, except for a white spot on FLAIR (Fluid attenuated inversion recovery) in my T2. The radiologist wrote to my doctor and said it was not suspicious, but to get another MRI in six to twelve months.
I saw the doctor for results and said how that morning I couldn’t find my words and my feet weren’t moving properly. I couldn’t walk and they just weren’t doing what they were supposed to be doing! I had the shakes, goosebumps, which I’ve actually been getting a lot of, even when not cold, and brain fog. The brain fog is not a normal fatigue thing, it’s like a serious cognitive dysfunction. I struggle with even the easiest of words, while I have these funny turns. The doctor checked my blood pressure seated and then standing. It dropped by 20 points. My legs were so weak, heavy and sore. The bottom of my feet were either sore or numb.
The doctor also said I have Raynaud’s Syndrome! The yellowing and lack of colour seems to be caused by pressure on my feet when I’m upright. It is not cold related. I couldn’t sleep last night because my blood pressure was 91/48. I felt dizzy even when laying down and felt like I had to concentrate really hard to breathe. I also woke up at one point around 4am, gasping for breath. This has happened occasionally in the last few months. I was too scared to go back to sleep after that, because I was worried I’d stop breathing in my sleep. I had the most awful feeling in my chest. It was a weird wheezing and dizziness, even when laying down. I felt wheezy, even in my throat at times and my lymph nodes still seem larger than normal. My neck felt swollen and my throat hurt. My heart felt like it was racing heavily and going at an uneven rhythm at times. I felt lightheaded and tired most of the time. My brain fog was pretty bad and I kept mixing up my words, e.g. strip instead of stick etc. I also had coordination problems, my limbs felt heavy and my eyes struggled to focus at times. I had become clumsy, dropping things all the time, and felt like I was watching myself perform tasks. In general, I was not as alert as I used to be. I couldn’t walk properly because my feet would drop heavily, like I had no depth of perception. My feet also felt numb.
My lips and lower face went tingly. My arm and leg on the left side and bottom of both feet went numb. I couldn’t even open a drawer as my hand wasn’t working properly. It was floppy and I took about four times to be able to grasp the handle. The doctor advised me to go home and have a cup of tea in the garden and practice mindfulness, because it’s probably anxiety.
I have been trying to rest and not be too anxious, but this has really taken a toll on me now. I was a highly active mum, always walking, cycling, gardening every single day and now I can barely get off the couch, or out of bed. It’s hard to focus on anything else when the physical symptoms are so prevalent and unabated. I am still getting the shakes and have excessive fatigue, even after just walking to the toilet, which is next to my bedroom. My neck, armpits and groin lymph nodes are bulging again and I am generally achy and feel awful.
December 13th to 14th 2021, I had a really sore left chest and swollen lymph nodes in my neck. It was so painful that I couldn’t even turn my head without it hurting. I went to a late night walk-in GP clinic in my town, as my usual GP is half hour away. There the doctor listened to my chest and said it was clear, but that I should get an ECG and blood tests.
I had the tests done 14th December and then called him for results that night. At this point it hurt to even swallow water. I had taken Panadol and Nurofen, but still felt so awful. He said my results were all normal and asked, ‘Have you been Googling symptoms?”’I replied that I hadn’t and that this was exactly what had happened last time I was sick. I told him that I had the ultrasound and CT scan to show I’d had reactive lymph nodes. I pretty much just said, ‘Thanks’ and ‘Bye’ and afterwards burst into tears. I was so sick of no one believing me. I also started to get really upset at being such a burden on my family. I couldn’t even be a normal ‘mum’ anymore.
Friday 17th December 2021, I saw my usual doctor again. I had worsening left side chest pain, large lymph nodes and shortness of breath and a general lethargic feeling. At this point I was on clarithromycin antibiotics and needed to see a respiratory specialist. The GP could hear that weird indescribable noise in my lower left lung again. I felt as though I just couldn’t take anymore. I was so weak, felt dizzy and shook, even when laying down. My chest hurt, my gut churned and was sore. I decided not to take anymore antibiotics.
My head still felt weird between my right ear and temple. It was like a nerve pain sensation. I’d totally had enough. My chest hurt when laying down and I had palpitations. I kept feeling out of breath and couldn’t sleep much. 24th December, I presented myself at the hospital again. I was out of breath and had a very sore chest. The observations showed I was stable and my chest was clear, so I was sent home.
I spent another week on the couch and missed Christmas with my family. I was so unwell and even lifting my head was a huge effort. My blood pressure continued to hover around the 90/50 mark. My ear was still sore. The doctor was stumped and offered me pain relief. I took Panadol and Nurofen, but they didn’t help at all. I didn’t want to take anything stronger like codeine or Endone, because they make me vomit and feel strange. I just felt like there was a heavy blanket weighing down on my whole body and mind.
12th January 2022, I started getting heart palpitations again, feeling wheezy and out of breath. By 13th January, I was coughing up phlegm again. My heartbeat felt weird and I thought I might faint. I was out of breath, especially when I laid down and I couldn’t sleep properly. My lymph nodes were still annoying me and I could feel them when I turned my head. It felt like someone was squeezing my throat. I had that heavy fatigue feeling again. During sleep I kept jolting and even hit myself in the face. My heart felt ‘uneven’.
January 30th 2022, I had been extremely fatigued, with low blood pressure for the past few weeks. I collapsed at home twice in one morning, so my husband called an ambulance. I could not even walk and was shaking so badly. I was taken to the hospital and had an ECG and blood tests. Of course, the results were normal and they tried to send me home. I refused to leave. How can they send someone home who is collapsing and can’t even move around their house in a safe way? They kept trying to kick me out and after about eight hours, I absolutely lost the plot and said that if they sent me home, I would kill myself.
They called a psychiatrist and admitted me to the Short Stay unit. A psychiatric nurse sat with me and listened to my story. He said there were elements of anxiety in it and advised me to follow up with my psychologist and GP. I refused and asked to see another doctor. The head of emergency came. They reassured me that although there definitely was something wrong, it obviously wasn’t life threatening, or I’d be dead by now. They also explained that emergency departments were for emergencies like stroke, heart attack or trauma and I didn’t have signs of any. I was then discharged, with advice to go on antidepressants.
I had pretty much given up with any medical help at this point. The respiratory doctor gave me the all-clear based on my lung function test. It was a phone consult because they weren’t doing any face-to-face appointments, due to the COVID outbreak.
March 2022, I saw a General Medicine Physician. He was a specialist at the top of his field and teaches specialists to be specialists. I was still pretty much bedridden with shakes, sweats, palpitations and dry cough. By this point I also had extreme fatigue. Within 15 minutes of hearing my history and timeline of events, he diagnosed me with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome). He wrote to my GP believing that it had been mild MECFS previously, but had been exacerbated by a virus, possibly COVID, in August 2021. It was made much worse by the jab. He termed it ‘Myalgic Encephalomyelitis, exacerbated by post-COVID Vaccine Syndrome’. I started having follow up appointments with him every month or so. I was also diagnosed with orthostatic Intolerance and dysautonomia.
The specialist was the only one who listened, helped me and believed in me. He is very empowering, even seeing me privately, but bulk bills. I have his personal assistant’s mobile and email address and I can contact him anytime. He is unsure how to get me better besides rest and nutrition. He even said, ‘Look outside the medical world. Try chiro, acupuncture, naturopathy and aromatherapy’. He warned me to be careful how I approach other doctors and specialists, because they don’t believe in ME/CFS Or post-COVID Vaccine Syndrome.
He sent me to a cardiologist. She is also at the top of her field and a senior consultant at the largest hospital in my state. She is also heavily involved in research. The cardiologist completely agreed with the specialist’s diagnosis and they started working together for my benefit.
My ANA is still 1:2560 a year later, so I finally got an appointment with a rheumatologist in July 2022. I waited nine months for that appointment thinking it was an autoimmune issue and that he’d be able to fix me. It turned out that I paid $440 for him to tell me I’m thin and anxious, but clinically fine! My BMI is in the healthy range for my height. I’m from a slender, petite family and got so sick of them blaming my weight! I was told it’s post-viral fatigue, to go home and relax, see a psychiatrist and be thankful I don’t have cancer! I was distraught.
My thyroid hormone levels have also doubled/tripled, since this started and my ESR is six times higher than the initial illness too. I have possible pre-diabetes, despite having an extremely healthy diet and no history of it before. I had to keep a food diary for my main specialist and he said, ‘You eat healthier than most doctors I know’. He was impressed! I have a ten year background in nutrition, prior to the disability work, so I know the importance of eating healthily.
All the other doctors and specialists tell me it’s anxiety and keep pushing antidepressants. One doctor even wrote me a script for Valium, winked at my husband as he said, ‘We’ll give you something to calm you down’. My psychologist, who I have known since my last pregnancy 10 years ago, thinks I have ‘sanctuary trauma’ because every time I seek help I am constantly gaslit. I have given up with all the doctors and specialists, besides my one amazing specialist, who is understanding and empathetic.
So that’s the last year of my life.
Ten months of this past year have been issues caused by the vaccine. I believe I did have MECFS prior to this, but it was very mild. It is now classified as severe, with no wellness periods. I’m in a constant ‘crash mode’ since having the vaccine. I’ve been feeling suicidal because no one believes me and because of the severity of my symptoms. I feel like I’m a burden on my family. My kids are 9, 13 and 17 and have to do everything around the house, while my husband works to make ends meet. He has a spinal injury himself (bulging and torn discs) and is in so much pain. He has to deal with it because I cannot physically manage. We are financially struggling and socially isolated. I have not even got one friend that has offered to come and sit with me. They just say, ‘Let me know when you’re better and we can go get coffee, lunch, shopping again’. I am beyond devastated.