Hi gumpopper - welcome to the Forum. I'm pretty new here myself. I know what you're going through - I had to quit my job and haven't worked in 7 years! Didn't realize I should have applied for disability early on (when I was still thinking I was crazy or lazy). And I am not able to tolerate many medications, either. I think that is a problem for many CFS sufferers. For me, acceptance was (and still is) very key in managing this illness. Most people can't understand what you're dealing with - since you appear normal.
I stopped worrying what others thought - (from co-workers to fellow church members) and just tried to listen to my body, rather than always trying to participate and keep up. I'm still learning after ten years. I'm the type that likes to "do" - and when I feel well enough I can be well on my way to a flare before I even realize that I've over-extended myself. My husband has learned to remind me that I've taken something for pain when I forget and launch into a project because I feel better. And I've learned to listen!
Good sleep is crucial, however you can achieve that without making matters worse in the long run with medication. Low dose xanax works for me when I am in a bad sleep cycle. But I am careful not to overuse it. Good diet. Exercise that you stop doing before you feel fatigued. This is hard when you start to feel better. I wasn't able to walk to the corner this spring and now am walking 30 min nearly every night. But I was focusing more on the time than how I was feeling - pushing myself to hit that mark, until I realized it was why I was back to feeling too exhausted to get anything done during the day. So I forgot about
the time and started paying better attention to the signals my body was giving me.
I wish there were medications that would help - but I haven't come across them. Anything I've been prescribed has only made matters worse. There may be others here who have had a different experience and will post. I do think CFS goes into a remission of sorts at times. Stress is the troll under the bridge, though, and makes everything flare, so I try to keep that to a minimum - and sometimes - when I'm at low ebb - even socializing is a stress -so I even eliminate that until I can manage it comfortably.
I'm sorry you're feeling so badly. You'll find a lot of information and support here. Take good care of yourself and do not feel guilty (in case you do - I know I did for a long time)about
having this illness. It's poorly understood but very real and you don't need to be harder on yourself than "it" already is!
Peace - Lucy
diagnoses: mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds: occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair.
~~ Chinese saying as quoted by Helen Nearing