Just diagnosed with EBV and CFS . Help! Need advice !

Hi Lori , yes resting is uber important , the best ive got to after 4 yrs is light stretching and now some shopping , i was bed bound for first 2 yrs,  i used to be very fit and active,i use a hormone cream it helps , with that. I got mine from ebv ,, pacing is key , and not being stubborn about it , sorry that doc was so rude , unfortunately its often met with ignorance , though some are understanding. <3 Guava 

I can't believe that after all these years and all the publicity this illness has received recently that bone-headed doctors are still advising exercise and shrinks. Exercise can make you a lot worse; of course, it depends how severely ill you are and what you're doing. Gentle yoga may be fine, though I couldn't even do that when I first became ill. Don't worry about what you might or might not have done "wrong" in the past. That's not helpful. Here's the best advice I can give you. Rest, rest, and more rest. Pace yourself, and don't try to push through the fatigue. That can cause you to crash. Some researchers believe that minimizing crashes can maximize your chances for improvement. Do whatever you can to get a good night's sleep, though this can be difficult with ME/CFS. Any doctor who advocates GET (graded exercise therapy) and CBT (cognitive behavioral therapy) is not up on lates studies, which have largely debunked these therapies. Some people do improve with certain regimens and drugs. For instance, Jennifer Brea, the filmmaker who made "Unrest" (available on Netflix streaming) is on some anti-virals that help her. But just be aware that there's no accepted treatment yet for ME/CFS other than rest and pacing. Especially, beware of charlatans that try to take advantage of us with very questionable "treatments."

How did I do it? By educating my body to get use to exercise again. It’s like learning to run a marathon when you can’t walk. Everything had to be done slowly and in tiny steps. I had lots of setbacks along the way, but the reason was always the same I did too much. 

I started out with a level of activity that caused me no problems. Then I worked up from that point.

Best of luck it worked for me oh and no special diet either. Had taken me about 2.5 yrs to get here 

Hi Lori. It makes me so mad that some doctors are still suggesting that working out is good for people who suffer from CFS/ME! I do think that light exercise such as walking or yoga is helpful in some circumstances, but it is proven that vigorous exercise will only make symptoms worse. 

I can definitely see why you suspected the symptoms were hormonal. I've had CFS since I was 30 and now (as I'm also in my 50s) the symptoms have gotten worse. 

The best thing you can do is to address your sleep issues and pace yourself. Even though I wake up exhausted whether I sleep 6 hours or 10 hours, I have a better outlook on life and am able to push just a bit if I've had a good night's sleep. Luckily, i found a doctor who prescribes me something to help promote REM sleep. Good luck to you and keep us posted. KPD

Hi Lori. I can't speak for EBV but can for CFS. You are still in them crucial early days with a chance of recovery although I'm sure 6 months feeling like you do seems like a very long time.

Over the years I have found that investing in various specialist tests looking into vitamin levels, gut bacteria, food intolerances and bloods are a good place to start. I didn't take any supplements for a long time and wish I started earlier as it has helped dramatically. I mostly feel normal whilst taking supplements along with a clean diet.

Of course we shouldnt just take any old supplements hence finding out what you are insufficient in first. I found that tests at the doctors were not thorough and in depth enough and came back clear so I have periodically found private and online companies that specialise to look deeper who have found deficiencies .