I have managed to keep working work since having cfs/me with lots of sick leave taken, but i was really pushing myself and didnt really have much of a choice as i was the bread winner of my family with young children and a mortgage etc. When i was functioning at a 3 out of 10 i was working part time doing 2 shifts a week, when not at work i was in bed resting not sleeping as sleep was one of my worst symptoms. AT a 6 out of 10 i was able to work full time but it was a big struggle and was taking alot of days off here and there with sick leave, i dont think i could have kept it going much longer but since valcyte i have been able to work full time, i still get fatigued but i dont feel 'sick' and with a good nights sleep and a day of resting i can bounce back to my 8 out of 10 function. Generally speaking im almost symptom free at rest, i still have sleep issues but controlled with medication and increased activity beyond my energy envelope causes symptoms so pacing myself is still needed but my energy envelope is larger then it once was.
I think very few fully recover back to 100% but i think many can improve. I think there are subsets of cfs/me and if one is in the herpes virus sub group and is positive to ebv/and or cmv/and or hhv6 then one has a good chance to improve significantly as there are treatments for this, antivirals.
Dr tetlebaum's book 'fatigue to fantastic' i think has a good basic set up of treating this illness with his SHINE system which stands for Sleep, Hormones, Infections/immune system, nutrition, exercise. I dont fully agree with all his specifics but i think if one works on those headings then one can improve. There is no one hit wonder but treatment has to be aimed at several different systems and it can take awhile to get it right as many people react differently to treatments, it really is a trial and error things. I think a big thing is also accepting this illness and try not to let it get u down and this is a constant battle, even at a 8 out of 10 there are days that just give u the Sh-ts as it does get frustrating as there are no real answers.
Finding a good doctor is also hard to do as many treat it as some type of depressive disorder, depression can be a symptom but definately not the driving force, so u need a doc who understands this and who will work with you and will to listen and maybe learn from your own research and willing to try some out of the box treatments etc
your daughter is still quite young and hasnt been sick too long, research says that if one can get onto the right treatment within the first 5 years the there is better chances of improvement and possible recovery.
Your daughter is lucky to have someone like u who is trying to understand this illness. Just being there supporting her is a big positive as she will definately need you.
Myself and others are always here to help if u have any other questions.
i hope things start to improve soon for your daughter, she might also benefit from being on this forum and talking with others like herself, this will help her not feel so alone with this illness.
cheers!!!
