Juli's Story: Post-COVID Recovery and Guillain-Barre Syndrome

As more and more people recover from COVID-19, the medical community’s knowledge about the virus and its effects continues to grow. Some patients who recover from COVID-19 experience long-term health complications. These can range from symptoms like chronic fatigue, shortness of breath and joint pain to cognitive impairment, inflammation of the heart and kidneys, and dermatological issues such as skin rashes and hair or nail loss.

Long-term neurological impairments have also been reported in patients who recover from COVID-19. For Juli, a patient at Allied Services, a rare neurological condition known as Guillain-Barre Syndrome has been the lasting result of her battle with COVID-19.

Guillain-Barre Syndrome and COVID-19

Guillain-Barre Syndrome (GBS) is a rare and typically rapid progressing auto-immune disorder in which your body's immune system attacks the peripheral nerves. GBS often begins with tingling and weakness in the feet and legs that spreads to the upper body and arms. As it progresses, muscle weakness can evolve into paralysis and even breathing difficulties that may require the support of breathing machines. The exact cause of GBS is not known. However, it is thought to be triggered by different viruses, including stomach and respiratory viruses.

While not common, cases of GBS triggered by COVID-19 have been reported. A quick search of the U.S. National Library of Medicine’s website shows 6 case studies since 2019 examining the incidence of COVID-19 triggered GBS. The studies report that along with common symptoms of COVID-19, patients who have recovered from COVID-19 displayed the neurological symptoms associated with GBS: paraesthesia in the feet and hands, symmetric weakness in the lower limbs, facial palsy, gait difficulties, and pain in the extremities.

Struggling with Misdiagnosis

In Juli’s case, she struggled to have her symptoms recognized as anything other than complications of COVID-19.

“About 12 days after my diagnosis with COVID, I woke up and everything just felt weak, but not just weak, something felt wrong. My arms, my legs - I felt like I could hardly move I was so tired. I had heart palpitations, but I had had those throughout my time with COVID. I thought maybe I had overdone it a little bit the day before. I was still run down with COVID, but something felt strange. I didn’t know what it was, but I did know something was wrong.”

Juli was in constant contact with her physician due to her COVID diagnosis and underlying asthma condition. She reported her symptoms but was told that what she was experiencing was due to her COVID diagnosis and that patience and rest were what was needed.

Juli got progressively weaker. Her limbs felt heavy. They burned and tingled, and soon, walking became very difficult. Her coordination was off and climbing the stairs was a challenge.

“I was pulling myself up the stairs in my house. It was a real struggle to get my legs to work. They didn’t even feel like they were part of me - and my arms were weak too. I was struggling to feed myself. I could barely get a fork or spoon to my mouth.”

“I knew I hadn’t had a stroke, but it felt like I did. My arms and legs just weren’t working for me.”

Alarmed by her deteriorating condition, Juli’s husband pleaded with her to go to the hospital. However, she received the same response. The hospital physicians concluded that Juli’s symptoms were caused by COVID-19, and that rest and time were what was needed.

“I was so frustrated. I knew something neurological was happening, I just didn’t know what. Did I have some weird mutation of COVID that was causing this?”

“At home things just continued to get worse. I called the doctor again, and I insisted I see him. He said I had a GBS-like syndrome and he again told me the same thing. Rest. Let it run its course.”

Juli was finally referred to a neurologist who, based on her symptoms, gave a diagnosis of Guillain-Barre Syndrome.

Finding GBS care at Allied Services

“I had researched GBS treatments and where to get therapy and Allied Services popped up. They had GBS specialists that could help manage and treat the symptoms I was having. I got my doctor to write a script for therapy and send it over.”

“By the time I started my therapy sessions I couldn’t drive. I couldn’t walk right. I had no strength. I was just so fatigued and so frustrated.”

Leslie Ritter, MSPT, DPT, is a physical therapist at Allied Services Luger Rehab Center in Scranton.

“When Juli first arrived, she walked very slow and had what we would call very guarded walk,” notes Leslie. “When we walk our nervous system gives us feedback with each step, so we naturally know where our feet are without even thinking about it. In Juli’s case, her sensory system wasn’t giving her good feedback, so she would have to look down at the floor to be sure where her feet were. She didn’t have good strength in her legs - or in her whole body really - so she really had to focus on every step.”

“Together, we began to work on her balance and her core strength. We also made sure that her muscles were staying nice and elongated or stretched. When we aren’t using our normal gait in our steps or reach in our arms, we can get a shortening in our muscles. We like to make sure to get a nice comfortable stretch in these muscle groups each time to ensure that we get maximum function.”

“With each visit, Juli would improve and we could add in more strength and endurance exercises. To this day, Juli continues to show great progress and determination with her recovery.”

“GBS and its lasting effects can be different for each patient. Symptoms may last days, weeks, or even months - and the same can be said for the rehab time. For some it may be as little as a few weeks - others it can take months.”

Although there is no known cure for GBS, the majority of people afflicted eventually experience full or near full recovery. However, it is common for patients to experience mild residual effects such as foot drop and/or abnormal sensations in their feet or hands for up to two or more years after the onset of GBS. Persistent fatigue may also be problematic for some. Fewer than 15 percent of those afflicted with GBS have a substantial long-term disability severe enough to need a cane, walker, or wheelchair.

Learn more about Guillain-Barre Syndrome treatment at Allied Services.