What does M.E. feel like?

For me, M.E. feels like having jet-lag, the flu, a concussion, and a migraine all at once. Some of my symptoms are severe tiredness after minimal physical or mental exertion, dizziness, muscle weakness, brain fog, forgetfulness, confusion, muscle pain and soreness, sensitivity to light and sound, nausea, sore throat, and headaches.

Out of all of those, it was the dizziness and unsteadiness that got my doctors' attention. Nearly all of the other symptoms are dismissed as stress or anxiety. But when I told my doctor that I was frequently dizzy, she had me stand up and close my eyes. I started to fall backwards, which apparently isn't normal. I was referred to a neurologist and had a MRI, which showed lesions on my brain. That lead us to believe that I had M.S., which has many symptoms in common with M.E. I tried to do what you're told to do when you have M.S., which is exercise. Unfortunately, exercise exacerbates M.E. and I didn't understand why it left me feeling worse. Over time there were no new lesions and no change to the existing lesions so the neurologist said it wasn't M.S., and he couldn't help me. After almost 2 years of getting worse and with no diagnosis in sight, I was ready to give up when I heard that. Luckily my husband was with me and he pressed the neurologist who finally suggested that I see a rheumatologist about Chronic Fatigue Syndrome.

The rheumatologist concluded that I had all the hallmarks of M.E., including:

• Post Exertional Malaise - feeling worse after exertion, sometimes for weeks afterward

• Unrefreshing sleep - a good night's sleep didn't improve my energy level

• New sensitivity to light and sound

The bad news was that due to my age and the severity, I was unlikely to have any significant improvement. If I pace myself and don't let my stubborn streak take over, I feel ok some of the time. If a special occasion is coming up I try to rest for at least a week in advance. But most of the time no good day goes unpunished. I need those special occasions for my mental health, so it's a balancing act. I'm fortunate that I'm not in the severe category, and I hope to stay that way.