I was on Adderall for ADD before developing CFS/ME. I realized something was wrong when the morning dose didn't give me that get up and go feeling, so I quit using it for more than a year. During that time my symptoms just slowly and gradually became worse, despite trying pretty much everything. For a long time I was pretty certain
I went back on it and it helped a lot, but like others have mentioned it did give me a false sense of energy, and I'd end up using too much and regretting it for the next three or four days.
Then I found an interesting thread here about opiates wiping the fatigue, brain fog, and creating a shield that prevents PEM. I haven't been able to get a script for them yet, but using old vicoden from a wisdom tooth removal basically worked a miracle for me. So I've been trying to get them where I can, risk of dependency be damned.
The mix of Adderall and an opiate is essentially a godsend. The Adderall helps with the brain fog and gives a slight boost of get-up-and-go, while the opiate prevents PEM and basically erases that really strange pain from the fatigue. The right balance of meds gives me the ability to do things all day long and have no consequences the next day.
It isn't perfect, however.
Firstly, like many of us I'm sensitive to medication. I've tried various antidepressents and even at miniscule doses I end up absolutely slathered in side effects. The doses of adderall and opiates required to have a positive effect take a couple of days to work up to because my system has to adjust. If I've been out of meds then I can count on an intense migraine for the first day I start taking them again, and another for the second. The third day is less intense, and from then on I can pretty much dose as needed without consequence. I also take various supps.
Another issue is that strangely, taking Adderall can increase the FEELING of some aspects of the fatigue, yet increase my ability in that same area. For example I may FEEL more fogged one day, but if I sit down and do a crossword or try to write the words come easily. One time I felt physically weaker, but before I took meds I was unable to break a pill in half and after it was easy. Somehow the feeling lies. I find this very strange and if anyone has an explanation for it I would be very intrigued.
Also, if anybody has any other clues regarding things that magically prevent PEM other than opiates I'd be really grateful to know of them! I'd prefer not to form a long term physical dependence if I don't have to. But if it's the only thing that works? Worth it.
Some further concerns and questions:
1) Does the chemical function of Adderall overlap at all with the mitochondrial malfunction in CFS? In other words, does the Adderall force the mitochondria into overaction and will this in turn accelerate the speed at which the illness progresses?
2) Does the Adderall use up stores of fuel that are also needed by the mitochondria, and if so, what are they? What are the best supplements and diet requirements to replace this fuel?
For a point of reference, without meds I'm sitting around 70% on the AYME ability scale (it fluctuates either direction), which according to them is just crossing into "moderate". So it may be that this kind of thing won't work for others, I don't know.
I'd be very fascinated to know if this kind of thing has worked for others and if it can help long term or if this leads directly to being bedridden?
Thanks for taking time to read my super long post. I just wanted to put down an in-depth reply for all of you who asked.