Juliet Stein

My main symptoms are currently severe muscle fatigue, muscle weakness and feelings of muscle “heaviness” that can last 2-3 days after even very light physical activity (ie walking 3 to 4 miles very slowly). These feeling primarily effect my legs, arms and sometimes back muscles. These symptoms seem to have started shortly after my COVID booster.

During the past two years, and especially the last six months, I and my family have had many negative COVID PCR and rapid antigen tests in the course of traveling. Because I was traveling back and forth from the US to Pakistan in December and January (when my symptoms began), I was tested frequently. At that time, I was staying with my father in California, who also tested weekly, and my daughter, who was tested several times. None of us ever tested positive for COVID-19. My partner living in Islamabad has also never tested positive. I haven't had any of the common symptoms of COVID infection, and I have been very careful to wear NK95 masks and follow appropriate COVID precautions.

Vaccination History:

In April 2021 while in Jordan I received my first dose of Astra Zeneca COVID vaccine. In May after returning to the US I received 1 Pfizer dose, and in June 2021 a second Pfizer dose. I had mild arm achiness for one or two days after these with some body aches, but I did not have any more general symptoms. At that time, it was not clear whether airlines and border-control agencies would accept doses from 2 different vaccine manufacturers as fulfilling two-dose travel requirements, so I opted to take 2 Pfizer doses after the Astra Zeneca dose.

On December 13, 2021 I received a COVID booster. This dose was administered at a Pakistani Government mass vaccination center and was said to be Pfizer vaccine. However, I could not read “Pfizer” on the label. A colleague who was vaccinated at the same vaccination center said that when she asked to see the vial used by the health worker, the vial said “sodium chloride”. Whatever it was, I doubted if the vaccine had been properly refrigerated or if the dose was correct. (I was later able to confirm the batch number of the vaccine and that it was Pfizer)

After the December 13, 2021 booster I had mild arm soreness for a day or two, and around December 20th I developed over 1 or 2 days general muscle soreness and low-grade head and neck aches along with peripheral neuropathy-type symptoms, including severe tingling, skin sensations, and numbness of my arms, legs and face. I also had some heart palpitations while exercising. Initially the muscle soreness seemed relieved when I drank 2 liters of an electrolyte and glucose solution over 24 hours. However, during subsequent days my leg muscles became even more sore, especially 8-10 hours after exercise. I sometimes had stabbing pains in my thighs and I developed a burning sensation in my feet after running. Because of these symptoms I progressively reduced my exercise from running 9 miles in the hills (late Dec 2021) to walking slowly and for short distances (2-3 miles) on level ground (early Jan 2022). I saw a primary care doctor and a neurologist about my neuropathy symptoms. At the suggestion of the neurologist, I got a brain and full spine MRI to check for signs of MS. The MRI was normal. At this point, none of the doctors I saw asked about my recent vaccination history.

In mid-January I returned to Pakistan. After 24 hours sitting on a plane and in airports and another 2 days of quarantine at home upon arrival, my “neuropathy” symptoms had abated. However, they returned when I engaged in even light activity.

On January 14th I participated in a one-hour yoga classes. My muscle strength seemed normal although I was slightly sore afterwards. The following day I attended another yoga class. My muscle strength was normal, but within 15 min after the session, I developed nausea, a feeling of shakiness and an increased heart rate. That night I developed marked muscle soreness, and the muscles in my shoulders, back and legs felt like they were in fire. This was not relieved by Ibuprofen or Celebrex. For several days thereafter I felt like I had run a marathon. At this point my symptoms of peripheral neuropathy also significantly worsened and included numbness of my arms (including shoulders and torso), legs (including my thighs and lower torso) and face (including my eyelids and inside my ears).

The muscle soreness was aggravated by even minimal effort like lifting a backpack, climbing stairs or walking nearby our house at a slow pace, and was accompanied by a feeling that my limbs were very heavy. Although I was engaging in only light physical activity (no more than 10-15 minutes at a time of slow walking or light household chores), my ability to walk or stand continued to deteriorate over the next 3 days. Standing or slow walking for more than a few minutes caused my legs to shake and gave me nausea and dizziness. I couldn’t sleep more than 3-4 hours a night, but I was wide awake and did not feel fatigued or in need of extra sleep. I developed headaches and momentary electric sensations in my scalp and extremities. I saw an embassy physician who was unsure what was wrong. As my condition worsened, she suggested that I go to a hospital emergency room. I declined to go due to spiking COVID-19 infection rates in Pakistan. On January 20, 2022 I returned to the US to see physicians at Kaiser Permanente in California. Because I could not walk or stand for more than a few minutes unassisted, I made the trip using wheelchair transfers.

The results of the blood tests administered in California by physicians at KP were all normal. With time, the numbness and tingling of my face, arms and legs abated. I saw 2 neurologists and 1 rheumatologist. Both neurologists commented that my reflexes were “brisk” and the second neurologist said he could easily press down my big toes on my feet (which was apparently abnormal), but no other physical abnormalities could be identified. I had my CK enzymes checked twice (both during bouts of muscle soreness post physical activity), but the levels were always normal. I have not had a fever, rash, joint symptoms or change in the color of my urine. The rheumatologist suggested I may have had an auto-immune reaction to the Pfizer booster I received in Pakistan in December 2021, but no one was able to come to a diagnosis regarding my muscle symptoms and no medication or therapy was recommended.

On February 20, 2022 I returned to Pakistan and tried to very gradually increase my exercise tolerance. While in California in January, I was at times able to walk 4-5 miles, however, after returning to Pakistan my exercise tolerance slowly decreased again. Just 1-2 miles of slow walking left my muscles very weak. Muscle weakness appeared within 20-30 minutes after exercise and peaked within 12-24 hours. When experiencing more muscle weakness, I also noticed more pins and needles in my extremities and (occasionally) a slightly faster heart rate, increased from my usual 50+ to 80-90 even when not engaged in physical activity. I could not go on walks for 2 or more consecutive days without developing tremors in my thigh muscles. Even very limited strength training (without weights) caused immediate muscle fatigue and weakness, followed by soreness. My nerves sometimes felt like they were buzzing, resulting in mild tingling. I never felt tired or needed to sleep more than usual. I was not experiencing any cognitive issues or “brain fog”.

In March 2022 I consulted with a third neurologist in the UK (remotely). He agreed that my symptoms were being caused by the COVID boosters I received but could offer no immediate suggestions for medications or therapy that would help. He did suggest I get a high-quality MRI of my arm and leg muscles to check for inflammation. I have an appointment in May with my primary care physician at KP (Dr. Lai) to discuss whether an MRI of my muscles can be scheduled.

In April 2022, my condition deteriorated again to the point where I could not walk or stand for longer than 5-10 minutes unassisted. I felt very weak all over and unwell and my heart rate was accelerated (80+ BPM even when not engaged in physical activity). I had difficulty sleeping and I became extremely photosensitive with headaches when I was in the sun. My arm muscles felt like someone was pulling on them. I repeated some blood tests in Pakistan (Glucose, heart function, liver function, ESR and complete blood picture), all of which came back normal. I also had an EKG, which was normal.

Shortly thereafter, I got my period. On the day that my period started, many of my worst symptoms suddenly abated. I could sleep through the night, my muscles no longer felt heavy, I could stand without feeling immediate muscle fatigue and I could walk distances of 2-3 miles very slowly. After my period ended, my symptoms again worsened.

After discussion with my primary care physician in Pakistan, I started taking estrogen tablets (modern HRT is not available in Pakistan) in the form of 2.5 mg of Tibolone 1x daily. This has helped to resolve my worst symptoms. I can sleep through the night more easily, my muscles do not get as easily fatigued, and I can walk 4-5 miles; however, I am still far from my pre-booster state. If I overexert myself, I still experience extreme post-exertional malaise with muscle weakness, peaking 24-48 hours after exercise. I am unable to engage in any cardiovascular exercise due to muscle weakness.

I do not meet the criteria for ME / CFS and my symptoms do not match a fibromyalgia diagnosis.