Fatigue has been my single worst symptom. I tried medication at one point, but was not comfortable with additional meds or the side-effects. I've made the choice NOT to deal with fatigue by using medication, but to handle it as best I can by resting and napping as needed. That's just the best choice for me.
It's not only the most difficult symptom to live with, but the most difficult to explain. It's an invisible demon.
I agree that fatigue is very difficult to explain. It's not something which is visible, but it's effects can be seen. I am fortunate that the medication has been a useful tool in combating this symptoms; and thankfully, I don't need it often anymore. Like I told Joan above, physical therapy has helped me in so many more ways than just "gait training."
Ironically, though, now that fatigue is losing it's impressive lead on being my #1 complaint, I sometimes feel a slight twinge of guilt giving myself permission to take a nap. But then I gently slap my own face and say, "silly girl, go take a nap!!"
Mandy, it is so nice to see someone else who has chosen to manage fatigue WITHOUT the meds. I thought I was the only one.
Provigil made me suicidal, and so I was dismissed as crazy; however, in the post-marketing surveys the company (cephalon) issued a new warning that Provigil does cause "psychological side effects." So I was not the only one, nor was I crazy. Unfortunately, many doctors have not seen that letter or gotten the word.
Joan
shortinthecord.blogspot.com
Provigil changed my life as much as my long overdue MS diagnosis. I went from a coma-like zombie to someone who can stay awake most of the time. The problem is - and it is a big problem for many MS-ers, is that Provigil is not FDA approved for MS Fatigue and some insurance companies give patients and their doctors an extremely hard time approving its use. I'm "lucky" in that I also have sleep apnea which is approved for Provigil use, but the manufacturer and MS organizations have to fight to get this approved for MS use!
Hi Mary Anne!!!
When Provigil first started kicking in, I was amazed at how "normal" I felt. There's another post coming in which I discuss Provigil specifically. Cephalon messed up when they studied this in MSers as the trial data was inconclusive.
Fortunately for me, my insurance company didn't have a problem with paying for this. However, and this is a BIG however, my insurance company stops paying for meds after $1500 anyways. So what difference does it make for them which meds they pay for?
Thank you for reminding me about the not FDA approved and insurance issue. I'll have to go check to see if I mentioned that in the next post. If not, I need to add it.
I ended up having a day yesterday where I needed to have taken Provigil but hadn't. I think I fell asleep during a couple of piano lessons. I do know that I zoned out enough that I didn't know what was just played or said by the student. Yikes!!
I never took medication for it because, among other reasons, I figured that if my body was fatigued I should rest rather than try to take a drug to override what my body wanted me to do.
I wanted to point out, however, that since I started Tysabri, my fatigue has been much much better. I think it was worth switching from Betaseron for this reason alone (though I also have many other reasons why I love Tysabri). Just wanted to put that out there.
For me fatique is the worst part of MS. I can deal with the foot drop, but the fatique is the real bummer for me. Provigil works good, but the only down side of it is the more you take the less it works. I take 2 pills a day and in my opinion, I think it works best in conjuntion with the natural state of you. Meaning, if you are normally a morning person, that is when you are going to have the most enegry and provig. helps. But this is just my opinion.
Provigil is great for my fatigue, but it has it's limits. The "boost" lasts for a few hours and then I'm a zombie again. I tried Amantadine for a while, but, even at twice a day, it quit working after a month or two. Zombie-land, hello again! I'm currently trying thyroid and adrenal supplements, but they seem to be only marginally effective and I just don't have the patience to continue! So I have a Provigil "fix" to get me through another afternoon. The alternative is to nap for most of the day to gain maybe an hour or two of "normal." People don't understand that I'm not tired. My brain has shut down. The battery is disconnected. So, Provigil works. Until I find something else, I guess it's my drug of choice.
Provigil is great for my fatigue, but it has it's limits. The "boost" lasts for a few hours and then I'm a zombie again. I tried Amantadine for a while, but, even at twice a day, it quit working after a month or two. Zombie-land, hello again! I'm currently trying thyroid and adrenal supplements, but they seem to be only marginally effective and I just don't have the patience to continue! So I have a Provigil "fix" to get me through another afternoon. The alternative is to nap for most of the day to gain maybe an hour or two of "normal." People don't understand that I'm not tired. My brain has shut down. The battery is disconnected. So, Provigil works. Until I find something else, I guess it's my drug of choice.
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Lisa, this is a wonderful summary of MS fatigue. I have had no success with any of the medications, unfortunately, primarily because the side effects were so severe. But coping strategies like energy conservation tips are working for me. - Joan
Thanks Joan, fatigue is something which can be difficult to handle. I've used (and continue to use on an as-needed basis only) one medication to help with fatigue. It was a blessing for sure, but not a substitute for effective coping strategies. (see future post on my experience with Provigil)
Physical therapy has allowed me to limit other medications known to cause fatigue which was a double bonus. Allowing myself to rest, nap, and say "no" to things has helped tremendously. The understanding of loved ones near me has probably helped the most in combating fatigue. Understanding is a powerful "drug."