A few years ago I was at what I thought was my end. I suffered from what my physician labeled as chronic fatigue polymayalgia syndrome. I was only able to be up/awake approximately 4 or 5 hours a day but not out of bed for too long. The rest of the time I slept. No matter how long I slept, when I awoke I would feel as though I HAD to go to sleep because I was exhausted.
My Rheumatologist sent me to a sleep MD. Thank GOD. After the first consultation he seemed to know just exactly what was happening to me and recommended I spend an overnight to have a diagnostic polysomnogram. Just as MD thought, I have abnormal sleep physiology. One of the abnormalities being "markedly diminished stage III/IV (deep sleep, restorative sleep) which MD feels correlates nicely with the c/o persistent fatigue and severe body pains. Just the sleep physiology category was abnormal, but there are several abnormalities.
He Prescribed an increase to my Zoloft, start provigil and Xyrem. I did just that and shortly thereafter I was ME again. It was miraculous.
Is there anyone out there that has my condition or symptoms? Is there anyone out there with similar treatment, or a different course of care that is found to be effective? Many people I share with tell me to have my thyroid checked. I did, it was normal.
My current insurance coverage is refusing to pay for the Xyrem as they consider it off label. I have non-formulary prescription coverage so I have already filed with the state 'AHCA' (Florida) to assist me further. A panel will be convening and I will be there to speak on my own behalf, so if any one out there has any information to arm me with I would certainly be grateful.
Xyrem costs 500$/month. I am paying out of pocket and have been for some time. This med is approved by the FDA for cataplexy secondary to narcolepsy. Other than Xyrem, there is no other medication available that I have tried, and I tried many from sleeping pills to antipsychotics, that works for me. Without it I face disability and what is even more devistating is that I am the primary bread winner for my family. We are struggling to pay the 500$ a month, but we also know that we have no other choice. So we do what we have to. This drives me in in the battle to have the state direct my insurer to cover the medication according to the terms of my policy.
