New article on Laura Hillenbrand

[WillowJ]

Elle has this: http://www.elle.com/Beauty/Health-Fitness/Chronic-Fatigue-Syndrome-A-Celebrated-Author-s-Untold-Tale

outstanding

(but she doesn't seem to know there is treatment available)

 

[IntuneJune]

Nice write-up! Determination!!! What a wonderful attitude.

I cannot help though to "bring it home" and many thoughts breeze through my mind..... First, such a positive article on a CFSer with such a positive drive may result in a positive public awareness of CSF/ME. Maybe more folk won over? We can hope.

And then, also, as we have discussed frequently on this forum..... we have such a myriad of symptoms. I had severe, debilitating dizziness a few years ago. Keeping a perspective here, I was DIAGNOSED 30+ years ago. In that time, I can remember only one severe dizzy episode, lasting two plus weeks, and not remitting until it was zapped with Prednisone. It was the extreme inflammation causing my dizziness. Those two plus weeks were awful.

I cannot recall many folks here mentioning this SEVERE dizziness as an ongoing, long-term daily symptom.

Are there many here with debilitating long-term dizziness?

June

 

[shannah]

Lengthy article and a good window into what life can be like for those with ME/CFS. I don't think XMRV was mentioned at all though.

Interesting June that at least in your case the dizziness was connected with inflammation. Dizziness is a constant companion of mine for several years now.

 

[WillowJ]

I agree; it was a good window into the life of PWME, and yes, amazing determination. And hopefully it will be good PR to the public. Not sure what the usual audience of Elle is... but I think normal younger women. But there were other articles in other publications, too. I'm happy with Laura as a public face of CFS. She's one amazing person.

I have had fairly debilitating dizziness, which persisted for months, but not to the extent that it made me bedbound. Enough to interfere with life and make me modify a lot of things, though. (And enough that people noticed and my disability wasn't hidden for a while; also my gait has been markedly strange when I was very much overdoing things.) Dizziness persists at a low level and recurs moderately strongly, depending on my level of activity, quality of sleep, and exposure to dietary and environmental triggers.

 

[IntuneJune]

Dizziness

My dizziness kept my head nailed to the pillow. I could not sit up. If I tried, the room turned almost upside down. The dizziness also made me nauseated when I tried to move. If I was still and horizontal, I was OK. Unfortunately one has to get up to go to the bathroom etc.

My ENT doctor tried an Epiley's (sp?) maneuver in the hopes that it was a problem with the crystals in the inner ear, the maneuver is VERY effective if, in fact, that is the cause. In my case it was not.

One day, it was so bad, I went to the ER, the doctor ran blood work, suspected inflammation and started the Prednisone. BAMB..... dizziness gone.

Sometimes I do get weird sensations..... not dizziness or room spinning, but the sensation I am moving (when I am stopped at a red light) but of course I am not. It's not being lightheaded....and not dizzy....but weird.

June