Sorry to hear that you might have this disease but I'm glad you might get a better understanding of how to cope with your health problems if it's confirmed.

Yes, looking at it in the long term is very daunting but there has finally been a lot of research being done into it over the last few years and a few promising breakthroughs have happened. For now the possibility of a blood test which can directly diagnose CFS rather than it being a diagnosis by elimination of other things being publicly available within 4 or 5 years is the closest. That at least might finally convince some doctors who are still caught up in denial of it's existence that it's not just a psychological disorder or something.

Speaking of what a lot of doctors still think, if one recommends you do GET (graded exercise therapy) and CBT (cognitive behavioral therapy), tell them no very firmly and advise them to look up the reports which reveal that the study those recommendations were based on (which was called the PACE study) has been proved to be faulty.

The CBT can help you to cope and learn to live with it (but you did say you have enough of that sort of thing on your plate at the moment anyway) but it does not affect, let alone cure the disease itself.

Exercise will actually make things worse. That is the major advice I want to give you today - if you start to feel really tired and need to push yourself to get through doing something, stop if it's at all possible. The key to managing and avoiding getting worse with CFS is rest.

Rest as much as you possibly can when you can and that will sometimes mean missing out on some things or having to give others up completely. It's damned hard and extremely frustrating but trying to push through will only end up with you being able to do less in the long run.

I hope this is helpful and that your condition stays the same. Given good management and by pacing yourself, you may even find yourself in remission. I did for 12 years and was able to live an almost normal life until a majorly stressful period tipped me back into a flare - or crash as we often call it.

Good luck.

PseudonymX, I brought up to the Endo to check my other hormones (estrogen, progesterone, testosterone) and discovered they were severely low. This made a huge difference. But I also had a very stressful lifestyle.

I went to a Compounding Pharmacy for the hormones so the Pharmacist wanted to treat me. She recommended Dr. James L Wilson's Adrenal Fatigue Supplements. These instantly gave me relieve. A lot of symptoms disappeared. During the height of the stress, I took them 3-4 times a day and less when there was less stress. They took away the weekly migraine headaches and other aches and pains. And the good part is, they can be taken without food. I tested them out by not taking them so a migraine headache started to form so I knew how good they were. I no longer take an SSRI, I don't need any other medications. I am able to do the things I need to do without feeling any stress at the end of the day.

I don't know if you know that stress depletes vitamins and nutrients and we also lose them through urination so there is NO amount of food that could replace the amount that we loose HOURLY.

I have also learned the art of breathing by Dr. Andrew Weil. I hope this information is helpful. Good luck on your journey.

Perhaps just having the answer to "why" will help. I'm 63 and was truly struggling to work, much less take care of my personal life. This went on for maybe 7 years before I crashed. I was just awarded disability, which helps financially some. I also have an immune deficiency, a chronic mycoplasma infection, hormone and diabetes issues, with accompanying anxiety - caused by trying to continue working when I can't. I keep HOPING I will feel better. I want to go visit my family; but can't. I still struggle with days of uselessness, barely able to make an egg and toast. And today I was "active," I washed a few dishes and went to pick up some food from a friend. Then came home exhausted and in pain. I used to struggle with feeling guilty about it all, like maybe this isn't real. Everything that can be treated is being treated, as far as I know. Except my dizziness. I still wonder about that. Some days it is really bad and I won't drive. Can't drive. Like yesterday and the day before.
Unfortunately, I don't have anyone for support or help. But fortunately, I live in a house that I make payments on (it's a disaster mess). I have a dog that cuddles with me 95% of the day. She is my comfort. I have a fenced backyard so I can just let the animals out to do their business. (Even the cat.) I order most of my food from online stores and have had to learn to like canned soups. (Mostly Amy's.) I read daily, play games on my phone daily. Pray daily. But my biggest obstacle may have been acceptance. This debilitating disease is invisible to others - except those who may see my overgrown yard and my messy house. I was in therapy - partially to get my disability. But she so totally recognized the reality of what I'm suffering; so now when I start to feel bad about not being able to do anything, I just remember her acceptance of it. And just accept it myself. When I had my last flare up and for whatever reason felt bad about it, I just remembered her asking me, Have you had a flare up since I've seen you? And that helps me to realize that I don't need to feel bad about myself or guilty for having this flare up. This is very real.
Being thankful for all the little things helps me. Taking my mind off of it by reading and playing those games have helped. I still look for that "miracle" supplement or technique or whatever. But to stay on an even keep - no stress and never over do it. Like today, I really wanted to do something else after I got home, after I ate, then after I napped. But not only did it not happen, I knew I shouldn't push myself to make it happen. So I didn't.
You are so young to be having to go through this. I hope you have a place to live, and if you have to work, a stress-free job. I hope you can afford healthy foods, too. I hope you get an answer from the doctor. But if what you have is CFS, then you just have to stop sweating it, because that's counter productive. Relax. Fortunately, I like reading and love my dog and cat.