I'm still having trouble with serious fatigue. It is different than the usual kind I've experienced. This is more like narcolepsy; in that if I sit still for a few minutes, the body starts to go to sleep. First the body shuts down and everything feels really heavy and sort of numb, then the brain clicks out and I find myself being jarred awake as my chin hits my chest.

I've had this happen while sitting at my computer, while eating and reading.

Sometimes I drink a coffee substitute made from grain, but I tried some caffeinated coffee yesterday and it seemed to help the fatigue. My guts don't appreciate it, but I'm wondering how much you folks drink, and how often during the day to combat fatigue.

Have you also used the caffeine pills? I'm thinking that might be easier on the digestive system than the actual beverage.

Thanks.

With love, Erika

I drink coffee but it's just because I like it. I don't drink milk so I use a non-dairy creamer plus Stevia for sweetener. I probably drink three to four cups a day. Never in the evenings, though. It might give me a little more energy.....I've never stopped to see if I feel more tired without it. But I can still fall asleep at night.

When I do try something that's darker or has more caffeine in it I can tell. I get antsy and shaky.

I drink coffee basically non stop, but like the medicines I have been prescribed it does little or nothing to help my fatigue.

Kitty,

If I get any more shaky, I'm just going to get into the bath, throw in a little laundry detergent and add my laundry. May as well do the wash.

With love, Erika

Hi Erika,

I take a 200 mg caffeine pill in the morning with my vitamins and I also take Vyvanse 20 mg at the same time. I have two cups of coffee after breakfast. It gets me going and I do not fall asleep during the day.

I find that I drink more coffee now that it's colder outside.

I'm eating mostly a plant based diet now and it seems the coffee helps keep me feeling fuller. Not totally vegan but definitely vegetarian.

Thanks Everyone,

I'm a vegetarian too Kitty. I'm going to give the caffeine a try. Who knows, maybe I'll not need the washing machine anymore .

With lov, Erika

Wiz, what do you think of the Vyvanse? I know you used to use Adderrall for fatigue. The Adderall gives me a headache if I take it too much.

I think my fatigue also comes from iron deficiency. I'm trying to sort out what is MS fatigue and what is nutritional deficiency. I'm off to a hematologist to find out.

Hi Natalie,

I love Vyvanse! I'm almost out of my one month free trial so I need to get my refill and see what my cost will be. Adderall made me nauseous and affected my appetite, it actually made me eat more sometimes.

Vyvanse stays steady, doesn't give me nausea or make me hungrier. In Illinois we can only get one month at a time through the local pharmacy because it's a controlled substance. If I could do mail order pharmacy it might be cheaper but I'll find out when I go for my refill next week.

I'm really glad that I agreed to try it.

Thanks Nancy,

My MS neuro tried me on Amantidine, which caused some sort of negative reaction, so I had to stop taking it. I'll have a consult with him on the 20th to see where we go from here. He mentioned trying Provigil if the Amantidine didn't work, and at this point I'm ready to try just about anything.

He thought that the bouts of sleepy fatigue were likely due to chronic pain and the exhaustion of the adrenals that it causes; so he also started me on Lyrica for pain.
Unfortunately that medication led to what I think was an allergic reaction (increasing edema in the extremities and face/throat, along with increased muscle pain with each dose), so that was stopped after 5 doses.

I'm not driving very far these days and only when I'm feeling up to it. I can tell when these bouts are likely to happen because other symptoms become more pronounced (blurry vision, heaviness in the body etc). Those Sx are enough to keep me from behind the wheel all by themselves.

I'm just looking for something to get me through until I see him again.

Thanks Eddie,

I too take 2000 sub ling B12 (my blood levels are good & blood cell counts are all good as well). I also take Baclofen and picked up some caffeine pills yesterday to see if they are easier on the digestive system than the beverage.

I've taken 300 mg today and have also downed a couple cups of coffee today. So far so good with the digestion. Only a couple of near nodding-offs this afternoon. The caffeine makes the body shaky though. And dare I say, I'm a little cranky too?

I feel like I'm a bit out of control lately. Not quite around the bend and ready for the Ya-Ya house, but definitely not myself. I'm aware of not making wise choises...but the usual concern regarding consequence is not there; and for some reason I just can't seem to care.
I think that my give a *** is busted.

With love, Erika