On May 13th 2021 I got my first dose of the Pfizer vaccine.
On May 14th I started to have unusual symptoms. I began to get muscle twitches all over my body, legs, arms and face. There were so many that I could not keep track, but at least 50 to 60. These muscle twitches then started to develop into pins and needles in my feet. On top of the muscle twitches, I thought my legs were falling asleep. I kept trying to ignore it and thinking it was me needing to take it easy post-vaccination. But this kept progressing despite rest, cutting out caffeine and not working out hard. My pins and needles started to turn into sharp pins and it felt like I was being constantly stabbed in my legs, arms and face but with some numbness. I also got eye floaters in my left eye.
Still ignoring this, I decided to go on a planned business trip to Alberta, but on the plane all my symptoms amplified. I blacked out for a few seconds and my legs started shaking uncontrollably. I also started to develop other symptoms like internal tremors and hand tremors. I constantly felt as if I was vibrating or shaking hard on the inside but no one could see it externally. It was terrifying.
I ended up going to a hospital in Alberta as I started to get strong symptoms constantly and wanted to get checked. This was on 20th May, 2021. At that ER visit they weren’t sure what was going on, but were hoping these symptoms would just fade and not progress. They said to give it a few days, but to come back if I couldn’t walk or talk or had slurred speech.
Once we returned to Ontario, I was still having all of the symptoms and there was no decrease. I was also having issues walking. I could limp, but it was hard and painful. I couldn’t go very far. My hand tremors, as well as the other symptoms, were frequent. So I reached out to my family doctor. He also wasn’t sure (what was happening) but said if I continued to experience these symptoms, to go to the hospital again.
I ended up going to Grand River in Waterloo because the doctor recommended going there as they were known for their neurological treatment. At this visit they checked my heart, did a urine test, blood work, COVID test, basic neuro exam and a CT of my head. All came back clear. The doctor told me that he had been seeing people with similar symptoms post-vaccination, and that they tended to be young, healthy or active adults like myself. At this point I had been experiencing symptoms for roughly three weeks. He said to give it another week and hopefully they would stop. He didn’t know to what extent. He said I was in the minority and the vaccine was helping more people than it was causing adverse reactions, so they didn’t know much about people like me. He also recommended I take the second dose when I could, but said he did not know how I’d react. He said I could get worse, or continue to have these symptoms.
My symptoms continued. I had good days where they were more moderate and I could carry on, and days where they were terrible and I couldn’t function. I even had days I would not accept what was happening and I tried to be ‘normal’ for my daughter and family. I tried to do things like I used to, but I got tired, weak or worse. New symptoms kept popping up and certain ones would fade. At this point I could walk more easily, but the tremors, twitches, migraines, visual difficulty, brain fog and fatigue intensified. I tried to carry on life as normally as I could. I tried to be a good mom and fiance, and tried to go out and enjoy the better days…..
I didn’t want to showcase my lows to the world and I was also in denial and praying they would stop.
On July 6 the tremors in my hands came back very strongly and caused tons of pain in my hands and arms. Little tasks like eating, typing or moving caused so much pain on top of everything else I was dealing with. The migraine was also so intense that it felt like someone was stabbing me. So I decided to make another trip to the ER at Brantford General. Here I talked to a very compassionate doctor who also believed this was out of her scope. They ran blood and urine tests, all of which came back clear. She was going to suggest an MRI but decided against it after speaking to a neurologist in Hamilton. They didn’t believe I had MS and thought that was directly related to the vaccine, so it was best to see a neurologist in Hamilton who was looking directly into the side effects of the vaccine from a neurological stand-point. So they decided that before moving forward with any tests, that I should see him. This appointment was finally booked for July 27.
In the meantime I tried to manage my symptoms as much as I could until this Zoom call appointment came around. However the days got worse roughly on the week of July 12. I started to develop intense joint pain, muscle weakness and muscle stiffness on both legs and arms. This made it harder and harder to function especially with my other symptoms. I noticed I was getting more fatigued and having a harder time forming what I wanted to say. I was limping around or unable to walk for long, but I was trying to hold off from yet another disappointing hospital visit.
On July 24 I tried to go to an infrared sauna to see if that would help relieve any pain I was experiencing in my joints and muscles. But that day I took a turn and I was so drained and in pain that I spent the whole day in bed and in and out of sleep. This was very unlike me.
On July 25 I decided to try to go out with my daughter and fiance but my legs started to have so much pain that they kept giving out and my daughter and fiance constantly had to catch and support me. Eating became too difficult because it would cause my hands to be so sore and weak. My migraines were intensifying with everything I did. No medication that I could get over the counter helped with any of the symptoms. By this point, no doctor even prescribed anything as they didn’t know what was happening. I tried to push through since the appointment was so close.
But on July 26 things took a turn for the worse when I could no longer walk without falling. My sister had to carry me to the washroom and my family kept having to catch me as I would fall due to the joint pain and weakness. I couldn’t use the cane because my hands were too painful and weak. My pain moved from leg to leg so I could no longer lean on one for support. It got worse. I just kept falling. It was so scary. I also got very bad pain in my head and strong shock-like sensations and vibrations in my legs, which amplified the joint pain and kept stuttering my speech. I was getting pins and needles up my leg. It was too much. So, I made yet another visit to the ER. This time we went to Hamilton General since it was local to the neurologist I was going to be working with.
At this hospital I received no tests. They did administer an IV for hydration and some migraine meds, but the relief these provided didn’t last long. They weren’t sure what to do. They were supposed to admit me since I could not walk at all without falling, but despite all that, they sent me home. Sent me home in pain and without any MRI or imaging to see what was happening to cause my symptoms to get worse. I felt defeated.
The next day I did have the Zoom call with the neurologist, but no MRI had been done and he needed those tests to be completed before he could take the next steps. He tried to book me for an MRI of my brain and cervical spine as well as an EMG to test nerve function. I was told these tests would take weeks or more likely, months to get into and until then I would receive no treatment. Not even for my migraines. He needed to rule out other potential issues/diseases before he could move forward. He did say he saw others like me who had injuries from the COVID vaccine but not from the Pfizer one so he wasn’t quite sure whether it was the same thing. I also got referred to a rheumatologist for my joint pain and to see if they could help in any way. This too could take months to get into.
I felt so defeated once again. I felt like I was so far away from getting real answers and I could feel myself getting worse.
On August 1 I ended up going to the ER again, (this time in Oakville), to get some help as I was still having issues walking and I started developing chest pain after I tried to go out to a store with my family and couldn’t walk for more than a few seconds without my legs giving out. It was a long night in the ER alone. I was finally admitted and they were finally going to do the testing I had been needing to clear me of certain diseases and other non-vaccine related issues. They decided to run a bunch of blood tests (too many to name) and give me an MRI so I didn’t have to wait months, and would be booking my EMG.
It is now August 6 and I’m still here, but should be sent home tomorrow. I’m waiting on my MRI results. I have started to walk very short distances with a walker, but the pain comes back quickly. I still have my other symptoms, slightly less so, but this is probably due to the rest as my symptoms tend to act up with activity. I’m on Lyrica for nerve pain. It has helped with my knees and hands, but I haven’t been doing much to see how long this lasts. I should get a better picture when I go home. My EMG hasn’t been scheduled. I’ve been put on blood thinners and doing very minimal physio. I’ve also had hand, knee and chest X-rays – all are clear.
No doctor can tell me if I will improve, when I will improve, whether I will get worse or if I will be like this forever. I keep getting told there isn’t enough known about the vaccine to know. They are hoping in a few YEARS doctors will start further research in adverse reactions. But I don’t have years! I was told that once they clear everything else we can go from there and it would point more to the vaccine. BUT I still haven’t found someone who is going to help me now.
During this time I was able to connect with many other people who are experiencing the same or similar symptoms post-vaccination. This group is a diverse group of men and women that have taken one of the COVID vaccines. Most are young and most were healthy adults who are now living a completely different life than we once were. Our symptoms are so similar and it validates how real this is. They are all over Canada and internationally. I also get new messages every day from other individuals dealing with these adverse reactions. Some of them are seeking help and some are nervous to share their story due to potential backlash.
I’m so determined to be a voice during all this to help myself and others like me. We have developed a support group and help each other any way we can through resource sharing and emotional support.
We deserve answers and we deserve to get back to where we were pre-vaccination. We put our trust in the doctors and government when we got this vaccine. We thought we were doing the right thing. Now we should be able to have someone listen to us and offer help when we are struggling with adverse reactions.
Also, we should not be judged for embracing our good days, trying to carry on life as normally as we can.
We shouldn’t be judged or told we are faking when we spend days in bed to cope, or show videos of our symptoms.
We have the right to not share every moment of our journey, and more.
We should.have to defend ourselves constantly or prove our stories.
We should not be treated poorly or called anti-vaxxers, because we all had the vaccination. We tried to do our part and it put us in a worse situation.
We aren’t trying to scare anyone or tell anyone what to do. We are sharing our story in the hope of helping someone else or to get help for ourselves.
I also want our voices to be heard as countries start to implement vaccine passports. We should not be treated like outcasts because our health conditions prevent us from getting fully vaccinated. A doctor from Public Health personally wrote me a recommendation suggesting I not have another dose.
Sorry, but we shouldn’t be forced to gamble with our lives and have another vaccination just to take part in normal activities. This just isn’t fair. There is a big group of us that have been affected and we deserve to be seen and heard.
We hope we can gain support from others whether you are dealing with vaccine-related injuries or not. We need help getting our voices heard and that is why I chose to share my story and will continue to do so.