Here is her question:
Quite a story, right? I wasn't able to provide her with much information. Dr. Bell told me a few things. First, that a lot of people get CFS and recover within a year or so and are never diagnosed accurately in the first place, so we really don't know how many there are. He's done some studies on recovery, but his study participants mostly got CFS as children, and children have a better chance of recovery than adults (I remind myself of that often!). Other than his pediatric study, I don't think there's much data on recovery. He also told me that the best chance of recovery is in the first 5 years of illness, so she fits in that category. Also, there are higher recovery rates for those who had sudden onset and for those whose symptoms vary day-to-day. Other than that, I don't know much about recovery.
I was ill with CFS for 4 years, but for the last year or so
have had no symptoms, and have considered myself recovered.
However, in the last month I haven't been feeling as good -
nowhere near as bad as before, but I've been having
headaches and nausea, and my energy levels have been a lot
lower. I've seen my GP and they've ruled out other things
and have said it sounds like the CFS again. I recovered the
first time round by pacing really carefully and getting a
lot of rest, and once I was feeling much better introducing
some gentle exercise. I've started pacing again, and this
seems to be helping a bit, but not completely.
I've got 2 questions; first, is there anything else I should
be doing to avoid relapsing more? Second, if and when I feel
like I'm over this, how long should I carry on pacing myself
for? In the last 4 or 5 months I'd stopped resting/pacing
much, and this didn't seem to have any negative effect until
now. Once I'm recovered, how important is it to carry on
resting, and how much rest do I need to get?
Do any of you know more about recovery, relapse, and the questions she's asked? Any insights or experience would be appreciated.