Just thought I would share some experiences on exercise. I think exercise is fundamentally important to getting you to a point where you are asymptomatic...BUT must be embarked upon very slowly and preferably under some supervision : either a very good personal trainer or a PT if possible.
I was a triathlete , avid horse rider , and general all round outdoorsy type when I got sick ...months later , finally diagnosed , it was as much as I could do to crawl off the couch if I dropped the remote : and sometimes I couldn't even summon the energy to do that ( watched some real carp as a consequence ) . about six months into treatment , started to feel a little better : and jumped back into an exercise regime that would have been a breeze for me before I was sick.
I immediately relapsed : and it took several months before I felt like trying again. This time , under supervision , I did Yoga , Pilates , and Water Aerobics and gently built up to some aerobic exercise , with great results. Four years into therapy , I am back on my horses , back swimming and riding my bike : but don't feel I will ever run well again because my knees are shot unfortunately . Exercise now makes me feel great !
So , in a nutshell : take it very slowly , ease into all over motion , aim for suppleness and strength and gently build up stamina : and stay with a slight elevation on heart rate until you feel up to adding exertion !
Best Wishes !