Re: New and wanted to talk about sleep problems - Response to Collen about fatig

[Guest guest]

I know exactly how you feel Colleen!!! For a while there, the

fatigue was going to be the death of me. But I couldn't stop life. I

have an 11 year old who is a very good and active soccer player

(plays on a traveling team so we are always on the go). I'm divorced

but have a long-time boyfriend who needs attention and was getting

upset with me if I was too tired to go out. I have a job that no one

else in the company does what I do so I'm always in demand.

But when you are fatigued like that, you dno't want to do any of

it!! I was getting very depressed and couldn't just let it affect

me. I refused it. So I would go and go and go. Then I'd get sick and

be completely out of it for several days to a week. Then I'd go and

go and go. Same cycle.

Falling asleep during the day was embarrassing. Luckily, I have an

room/enclosed office with my back to the door so no one could really

tell if I was asleep. I would always wake up if anyone came in and

no one ever realized that I was asleep. I would sleep like that

sometimes long enough for my screen saver to come on on my computer

(it's set for 20 minutes).

So when my rheumy referred me to this lung doctor and I did the

sleep study, I was glad that I was at least attempting to make life

better.

The lung doctor put me on Provigil (Modafinal) which has been my

lifesaver. Ask your doctor about it. It's labeled for narcolespy but

it's been found to achieve great results for fatigue in RA patients.

I think it mentions that on the website as well. You might want to

really consider it. I have seen definite improvements from it. On

days when I don't take it, I'm back to my old self so I know it

really works.

Eventually though, with the Xyrem, my lung doctor is hoping I won't

need to Provigil. He things that my faitgue is completely caused by

the sleep issue (that is somehow caused by RA or maybe fibro - I'm

going to ask my rheumy about that on my next visit).