My Summer of Guillain-Barre

The story of Patti

It all began in the earlier part of June after my first Shingles Vaccination. Initially I had the typical soreness of a vaccine site then it developed into a reddening raised spot on my arm.

By mid-June I felt like I had been hit by a truck with overall body pain and my back was painfully throbbing. The back pain was substantial enough to visit urgent care. The exam and x-ray was uneventful and I went home. Several days following urgent care, I was unable to walk and was taken by ambulance to the ER.

Upon my ER exam, symptoms and history (including the Shingles vaccine) and spinal tap, I was diagnosed with Guillain-Barre Syndrome, GBS, a rare autoimmune condition where the body begins destroying the nerve protecting myelin sheath. Once diagnosed, my Healthcare Team immediately began IV treatment of Immunoglobulin Therapy to stop the process of damage to my nerves.

So began my three-week hospitalization of a bizarre and blur of events, including hard word relearning to walk, continued and unexplainable back pain, intermittent disorientation and almost worst of all the horrid and vivid nightmares somehow associated with GBS and/or treatment. The nightmares were terrifying because they seemed so real and I always felt alone, aware I couldn’t walk all the while in the presence of strangers and unsure of who they were and their intentions and not knowing if I was being held against my will. In one particular nightmare I fearfully wondered how I could notify the police when I had no idea of where I was at!

Once released from the hospital, I continued with outpatient physical therapy for several weeks where I regained the strength and confidence to walk again.

Aside from the tremor in my hand when raising an eating utensil or drinking from a glass, and the increased hypersensitivity to the pre-existing pain and symptoms of Central Pain Syndrome, CPS (unrelated to GBS), I am back to my pre-GBS self.

Guillain-Barre can be fatal if left untreated and I am grateful to the ER team for quickly treating once diagnosed.

I was told by the ER team that acquiring GBS from the Shingles Vaccine is extremely rare, yet I somehow managed to acquire it. Because of this and with no political intent, I am unable to receive seasonal vaccines (including the COVID vaccine) this causes me a lot of fear and anxiety, but I do what I can using precautions of masking when in public, avoiding crowds, hand-washing and to strengthen my immune system by taking supplements recommended by my physician.

I look forward to the upcoming summer with hopes of a “normal” spring and summer (opposite of My Summer of Guillain-Barre!) when my husband and I can enjoy the rewards of planting flowers and tomatoes.

NIH: Guillain-Barre Syndrome

Central Pain Syndrome Foundation