I am a 31 year old woman from Devon UK
Before the vaccine I was fit and healthy, I exercised frequently, running, playing netball three times a week and attended the gym often. I’m also in the Royal Navy.
As a serving member of the Forces, I have received more vaccinations (e.g. rabies etc) than those outside the Forces. Out of all the vaccines I received, I have never suffered any adverse reactions. I was quite happy to step up and take the covid-19 vaccine albeit with slight apprehension in relation to how quickly it had been developed and rolled out to the public.
The entire force received a blanket letter stating that if we failed to get the vaccine, we “Could be” administratively discharged. I got my first dose of Pfizer at my local vaccination centre on the 30th May 2021, administered in my right arm.
Whilst in the holding pen, where they monitor you for 15 minutes post vaccination, I messaged my friend, telling her I had a strange prickly tingling sensation in my tongue, my right arm and felt it surge up and down my body. The sensation stopped after the 15 minute waiting period but I did suffer a one sided headache for the rest of the day. I thought these were normal side effects so I wasn’t overly concerned, blaming my initial apprehension to this particular vaccine.
The next time I noticed something wasn’t right was around 6 weeks later.
I would get pains in my right breast (I thought it was my breast at the time). The pain was brief, lasting only a few seconds.
It progressed and continued over the next few weeks. I carried out self-examinations with nothing to be found. I thought it could be hormonal pain and decided I would see my GP if the pains persisted after my monthly cycle.
In the Military, we have on-base GPs but are then referred on to NHS specialists if needed. I received my second dose of Pfizer on the 23rd of August 2021.
I experienced no immediate side effects on the day, everything was as normal except for the pain in my right breast. Not long after the second vaccine the pain in my right breast was becoming more frequent, around several times a day.
I was on Summer leave from work until September and wouldn’t be able to see my GP until I returned.
I was with my friend at the end of august, we were at the beach when my breast pain stopped being sporadic and became constant, bothering me all day.
When we got home I examined myself and found a lump on my right breast and under-arm where my lymphs are located.
I called my Doctor immediately and went to the nearest military base for an examination. I was referred to an NHS breast clinic where I was supposed to be seen within 2 weeks but I didn’t even receive an appointment in this time, as the waiting list was so long.
I decided to go private and paid for a London clinic appointment with a private Radiologist An ultrasound was carried out on the breast and armpit area.
At this point, I had waited several weeks for the NHS to get back to me with my urgent appointment, by this time the lumps were apparently gone and the ultrasound came back clear.
I have read that many women experience temporary lumps after the vaccine that came and went in a relatively small time frame. After the ultrasound came up clear, I was happy (stupidly) as the lumps were gone and I believed I would start improving, thinking that whatever it was had run its course.
Not long after, in September 2021, the tremors started. They began in my hands coupled with the feeling of internal vibrations. I was shaking constantly, it spread to my lips and jaw area. I started having what I can only describe as “tremor attacks” . They would happen if I tried to exert myself.
When I was not having an attack, I could manage the tremors – eat, drink and dress myself but when under attack, the shaking would be all the way from my jaw to hips, affecting my legs as well. At the same time, the pain started moving down my right arm.
I started going to the GP surgery on camp regularly as my body was doing crazy things. Tremors and fasciculations were worrying and unpredictable. I also have diarrhoea that started in Jul 2021 and has remained. The doctor ran blood tests for Rheumatoid Arthritis (family history), Bence Protein, FBC, thyroid function, liver function, renal profile, serum C, bone profile, iron studies, Vit D, calcium and potassium levels. All results came back clear, bar a little bit of low iron which I took some tablets for.
I realised once the pain started to spread, that although I did have a lump in my right breast, it was in fact the ribs underneath that were hurting, all my right ribs are tender/painful to press and I have the same bruised/tendinitis feeling down my right arm and sometimes right leg.
In October, I also lost my singing voice, the higher and lower range went first, then my entire voice. I took 5 weeks off work to rest and luckily my speaking voice returned. It doesn’t feel like my vocal cords are damaged, they just feel completely exhausted; and this is true for all of my muscles – they fatigue very fast and it is exhausting to try and push through in any way. If I push too hard, I have a tremor attack. Even thinking about singing or exerting myself can sometimes bring the debilitating fatigue on. By the end of the day sometimes, I can’t swallow properly or use my muscles as I want to… they give up.
In October I also developed tinnitus, on and off in both ears. I’m lucky it’s not as aggressive as some cases I’ve heard about, only lasting 30 seconds to a minute. It has actually gotten worse now but still, I’m thankful.
I went to see a private Radiologist for a head-to-pelvis CT scan on the 2nd of November because the pain was so bad in my jaw clavicle,right arm and lower left arm. All results were clear. I was really worried.
I had severe tremors, and would wake up every morning beyond stiff, like a stone statue. It took hours to get ready as my body was stiff, painful and shaky.
As I stretched, the muscle fibres started shaking, it was like my own nervous system went to sleep with me.
My triggers were exercise and over-exertion. Attacks were less frequent when I removed triggers. Gentle movement during the day helped but I was still shaking a lot in the morning and throughout the day.
After the 5 weeks of sick leave, my voice returned and I returned to work at a desk role. Work was understanding and empathetic of my condition, they were relaxed on start times etc I’d go in when I could finally get moving, and was allowed days off when things were particularly bad. Christmas leave was not far away.
At the end of November, I finally saw the NHS rheumatologist. She did a physical examination and full auto immune blood test including for muscular dystrophy and lupus. All returned negative. She seemed concerned about my symptoms and wanted to see me again in the new year but at that time couldn’t find anything rheumatological going on with me.
After all these tests came back clear – my GP’s attitude changed and it was like he was hearing what I was saying but not listening. As if he wasn’t concerned about my physical symptoms. He never offered any solution or treatment nor did he express any proactive action to find a diagnosis for me, almost happy to let me stay on the NHS rheumatologist’s radar who didn’t believe my symptoms were rheumatological.
He could visibly see the shaking and distress, but acting like it wasn’t very concerning, at this point I realised he was leaning towards a mental health related issue rather than anything else.
By December, I couldn’t read properly, jumbling up words and saying words that weren’t there. I’d get to the end of paragraphs and realise I hadn’t taken information in properly, this lasted around 3 weeks. This issue resolved itself after a few weeks.
My symptoms continued into the new year with muscle twitches appearing in my abdomen. At first I didn’t think much of it as it was infrequent and then a whole wave of new symptoms kicked in. My thighs tingled and twitched, I had the sensation of water running down legs, pins and needles everywhere, even my tongue. It wanders into different places, without a preferred spot. The leg twitching in particular was so aggressive, I couldn’t sleep.
I booked another GP appointment to see if anything would calm the twitches and help me sleep. On the day I was due to see him, I lost my voice again. I hadn’t gone into work that day so it was an online consultation.He tried to call me and I had to hang up and send him a typed message (work system) to explain I’d lost my voice again. I also had food stuck in my throat as I couldn’t swallow either.
He replied saying there was nothing he could give me as there was no clear diagnosis. I was with my friend who couldn’t believe the way he was treating me. He was describing the symptoms I’d suffered from for months as new, downplaying serious symptoms which was infuriating. I then found out he hadn’t even referred me to the Neurologist like he said he would in a previous appointment.
I opted to switch to a new doctor on base, at first he seemed more approachable,offering me propanol to allow sleep and would review in a few weeks. Initially the propanol calmed my muscles down but soon after, twitching had intensified and became wider spread to my face.
I had a 2nd rheumatologist appointment in February, nothing was found. She wrote to my Doctor saying she couldn’t find anything from a rheumatology perspective.
After the twitching started I was sick with worry; my grandfather passed away from motor neurone disease and some of my symptoms are similar. I booked a private neurologist appointment and he was ok but acted as if I had nothing to worry about. I was forwarded for an EMG which I also paid for myself. The EMG came back normal, however, whilst waiting for results pins and needles started, so this symptom wasn’t explored.
When he wrote my doctor reports it listed a benign essential tremor in my hand, which I knew was an incorrect diagnosis. He recommended to my GP that I have an MRI.
Again I was back to the GP, only the first Doctor I’d stopped seeing was available. I told him I wanted a referral on the NHS for an MRI based on the private neurology assessment.
“I can write you up for an MRI, but what was the reason for needing one?” – I couldn’t believe how many times I had to repeat my symptoms to this doctor. He either didn’t believe me or wasn’t annotating my medical notes correctly – or both. This doctor also decided to refer me to the defence mental health unit. Something I didn’t feel I needed but knew it was a hoop I’d have to jump through.
I got lucky in mid May, the hospital called with a cancellation that afternoon for a brain and spine MRI. It was awful, the vibrating set off my tremoring like crazy. The result was normal. As I was changing out of my hospital gown, the spotlight highlighted a dip in my right thigh which I hadn’t noticed before now.
I had muscle atrophy, another sign of motor neurone disease. A few weeks later more appeared on my right leg.
To this date I now have 5 “dents” and 2 fleshy lumps. The dents have a dead sensation, aching like when you have a dead arm, I get the same pain I get in the upper arms, to me it’s like deep tendonitis, in the connective tissue and bones, not my nerves.
It was July 1st when I posted on social media, I was so upset. I was limping and fast deteriorating yet no one had answers. It exploded with messages and that’s when I first discovered I was vaccine injured, I saw people with the same symptoms, ranging in severity.
I also had my defence psychologist appointment on the 1st of August 2022. I felt vindicated after the psychologist concluded I have no anxiety, depression or mental health issues that they could see. In July I lost my position of employment, I couldn’t keep on top with ever-growing symptoms and no treatment.
I have a new private London neurologist, who I really like, knows both vaccine and covid victims with odd symptoms and knows there is something wrong.
They’re currently reviewing MRI results and waiting on more tests – repetitive stimulations, Single Fibre Electromyography (SFEMG) to exclude Myasthenia Gravis and an EEG.
Since August I started hyperbaric oxygen therapy (HBOT), and an infrared sauna, also a protocol from Root Cause Clinic. I’ve seen a dramatic reduction in some symptoms, eased muscle stiffness and no swallowing issues, my vocal range is coming back and I can walk without a limp thanks to HBOT. I’ve spent close to £10,000 on private investigations, treatment and supplements.
I’m lucky to have a support network of friends and family, it’s heartbreaking that people are left so isolated with worrying symptoms, for people injured and reading injured stories, it’s important to not feel they have every diagnosis being read. It can be frightening to read and it’s easy to fall into that rabbit hole but remember, every injury is different it appears and people HAVE healed.