This is Alia’s story:
My name is Alia and I’m a single mom to an amazing 5 year old.
I have been though a lot in the past 20 years due to chronic pain conditions, Endometriosis & Ehler’s Danlos Syndrome but I was able to get those relatively under control and miraculously had my daughter at 37 years old!
I worked a job I love and was blessed to do it from home. When the pandemic hit things were rocky but we got through it and by the summer of 2021 we were so excited for her to start preschool in September!
We had been isolated for so long and I was really looking forward to her making new friends. So I went and got vaccinated. The first Pfizer Vaccine was on 8/5 and I was fine, just felt a little sick but the second Pfizer Vaccine on 8/26 was very different.
After the tech at Walgreens injected it into my right arm I felt dizzy, sweaty, nausea and tingling throughout my body. They told me to hang out until I felt better but no one checked on me and I eventually felt like I could drive home.
A few hours later my injection site was really hurting and I noticed it was hugely swollen, red and hot to the touch. I was so alarmed by it I drew a circle around it like you see people do with snake bites before I went to bed, and when I woke up Friday morning I went directly to Urgent Care.
I saw a nurse who basically blew me off as it being normal and what they were calling “Covid Arm” and said it would go away in a few days and sent me home. By that Friday night the pain started.
Excruciating pain in my extremities. I could barely use my hands or walk because I was in the most outrageous pain I’ve ever known. I’m still in the same pain today 5+ months later. But it has gotten so much worse since then.
I originally thought the vaccine had triggered an autoimmune response or a EDS flare and it would eventually start to get better. Nothing touched this pain though and I started having dizzy spells and vomiting but again I attributed it to how much pain I was in.
On Halloween I got a sinus infection and those spells of dizziness turned into spells of dizziness, nausea, falling, numbness in my hands, racing heart when I stood up, vomiting, weight loss, memory loss, brain fog, sensitivity in my right ear, vertigo and the pain constantly 24/7 and the spells were lasting hours, then days and then weeks.
I was basically incoherent for the majority of November into Mid-December. Thank God for my mom who was a super hero and helped take care of my daughter during those months! I’m incredibly blessed to have my family.
Since then I have been diagnosed by 4 separate Doctors as having an adverse reaction to the Pfizer vaccine on 8/26.
I’m seeing 2 different PCP’s, a Neurologist, Rhumetolgist and an Endocrinologist. I have had multiple blood work ups & all they have found is I now also have Mono. My neurologist is worried about my reflexes as neither knee responded so I have to go for nerve testing on my arms and legs in early February. She also ordered an MRI of my brain which I got this week.
My new PCP believes I have an autonomic disorder called POTS and I will have the diagnostic tests for an official diagnosis in the coming weeks. Unfortunately the only things that help with the pain, although barely, are all very expensive and alternative which are not covered by insurance and I can only work very part time.
I’m not allowed to drive my daughter to school anymore which is heartbreaking in itself.
She desperately wants to go to school either all day 3 days a week or 5 half days but there’s no way we can afford that. My parents are on a fixed income and they have already given us a roof over our heads and my mom has been helping me with my daughter and they just can’t afford it.
With how expensive everything is I want to help them with the expenses but I’m just a drain. I never in my worst nightmare could I have ever dreamed this would be our lives.
I did my part to protect my family from COVID. I wore my mask, I spent over a year alone with my toddler playing and entertaining her as everything was going crazy. I didn’t see friends. I did everything “right” but now I’m incredibly sick as I fight to get my life back for my daughter.
I truly believe that both the vaccine injured and the long haul patients are experiencing the same thing but “long COVID patients” are studied and the vaccine injured are ignored.
I just recently got an appointment with a Doctor who knows what he’s doing. He’s been studying autonomic dysfunctions for years and he’s authoring a book with 2 other Brilliant doctors, one of the Countries best Rhumetoligist & Cardiologist that should be out in the next year.
He was incredibly smart and kind and restored a little of my faith in the medical community after being ignored for 6 months and made to feel like a crazy person!)
He did a long test today and he diagnosed me with 3 Autonomic Disorders caused by the vaccine. I do want to say that it’s being widely acknowledged & studied in the long haul Covid patients for Autonomic disorders and I believe that both the virus and the vaccine are causing similar problems in both groups.
One is acceptable and worth studying and one is not, at least not yet. I will continue to pray for all of us who are sick to get the help we all deserve.
So on to my diagnosis in addition to the Mono are all Autonomic dysfunctions.
1. Small Fiber Neuropathy which is causing the excruciating pain, the neuropathy in my hands and feet and the burning, pins and needles on my legs that feels like horrible sunburn.
2. Parasympathetic Excess which is causing the inflammation or chronic inflammation and anxiety all of which can be triggered by anything from slight temperature changes or stress or something I eat or something I’m not aware of at all, but the longer it lasts the more damage it can cause.
3. Sympathetic Withdraw which is causing the dizziness/vertigo, nausea, heart rate increases by standing or walking short distances (130+bpm when I am standing or walking to the bathroom) and a drop in my BP, fatigue (the Mono obviously makes it even worse) brain fog, headaches, anxiety etc).
There are various ways to treat these dysfunctions. We’re starting with 2 specific supplements, and 2 very low dose medications and I’m going to start working on building up my strength and stamina so I can get myself walking for 40 minutes. This will retrain my heart to get the blood pumping to my brain again. It’s not the exercise itself but the recovery that helps with this but at first my recovery from any exercise will be days.
I’m in for a long road ahead of me (6+ months) to regain my quality of life but at least I know what I’m up against and I’m so grateful for that! Thank you for your generosity and support during this incredibly scary and difficult time. It’s helping me more than I can say! I’m hoping for a good day so I can personally thank everyone so please bare with me! God bless you
Read her GiveSendGo HERE.