My onset for GBS was in August of 2005. I was not permitted to heal appropriately because when i came out of the hospital I had to deal with a divorce, a terminally ill aunt and three teenagers who ALL chose me to live with despite my intense battle for even custody in the court room.
But "fatigue" has been my biggest enemy since then; far more crippling than pain or loss of limb function. I recently began to research EM (Chronic Fatigue syndrome) and I have all of these symptoms. The worst is that once my "energy tank" hits empty I will sleep for days at a stretch; rising from bed is almost impossible and very difficult when it happens and the act of just sitting up for 8 hours spends all of my energy. To shower is enough to exhaust me and return me to my bed. So far the longest I have been confined to bed is seventeen days straight.
How alone am I in this? It is only minimally connected to medication as I took myself off of everything in 2010 in an attempt to rule out hyperalgesia (no, it was not easy and yes i did this under medical supervision: DO NOT TRY THIS AT HOME) and I was just as "fatigued" as when on the medication. My research on CFS has said that where no one really knows what causes it most patients seem to get it following a virus. (Ahem) (Just as most of US got GBS following an intestinal bug). Bringing this up with my doctors is, of course, an act of training them, and mere speculation so I thought that here was a good place to ask. I will see my doctor this afternoon and plan to tell him of this group as well as my new theory but wish I had more to tell him.
Thanks for any feedback.