Living with Guillain-Barre Syndrome

In 2003 I was expecting my eighth baby and felt more tired than usual. It began with my head. I couldn’t hold it up straight. I grew more tired over the next day or so until I was having a hard time opening my mouth to breath and finally laid down on the floor and told my husband I couldn’t move.

He rushed me to the hospital where all the doctors were stumped. They ran every test they could think of, but I didn’t have a fever and only had elevated liver enzymes and a greatly enlarged spleen. A specialist found I was positive for acute CMV [Acute Cytomegalovirus (CMV)] which had turned into GB [Guillain-Barre Syndrome (GBS)].

I lost the baby and spent the next few months in bed. Slowly, over the next year I gained back my ability to move. I remember I could only take a swipe or two with the hairbrush before having to rest so I could lift it again in order to brush my hair.

Although I have had serious improvement, I do not have the energy I used to have. My thyroid went out and I now have arthritis in my knees and hips- and I’m not that old! Before GB I had boundless energy and now when the weather turns severely or I’m under stress, I feel extremely tired. I’m more forgetful but I try to just buck up and keep smiling.

I’m surprised how few physicians are totally unaware of the connection between acute CMV and GB. I have since met numerous women who have had continued fatigue after miscarriage misdiagnosed as depression and grief when it could have been virus-based. Maybe it’s not just in your head. I’m happy more testing is being done.