Do you drink coffee for fatigue?
 

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. :o 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. :D

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 :D.

With lov, Erika

Have you tried B 12?
* the sublingual (under the tongue) best if taken first thing in the morning before any food or drink - place under the tongue moving it around a bit so it isn't staying in one place til it dissolves.

* Methylcobalamin


we are trying this one- seems to kick in nicely for me, no need for coffee in the mornings if I need to be somewhere. sold @ Costco also.
dh takes one every morning & he wouldn't do that if he felt it was not making any difference.


http://www.amazon.com/Kirkland-Signa...sublingual+b12

I live on coffee, too. I can drink two or three cups before bed and go right to sleep.

I may be too tolerant to it now for it to do much good.

Profound fatigue is a hallmark of autoimmune conditions, and I have several, in addition to a Primary Immune Deficiency Disorder, and Peripheral Neuropathy.

Coffee keeps me going, (at least to the bathroom!).

Hugs, ElaineD

Erika, sorry you're getting the narcoleptic type of fatigue…I've fallen asleep while eating dinner and out at restaurants. I know whereof you speak.:(

I'm not sure that caffeine will help this type of fatigue, but try it…I drink 2 cups of caffeinated coffee in the morning, even though my cardiologist recommends decaf. It gives me a bit of a boost, although when the fatigue hits nothing helps and I end up sleeping the day away:(

Hope you get your vim and vigor back soon:hug:

Thanks Everyone for your insight.
It really gives me something to go on.

I 've had 2 cups so far today and do feel a little jittery now, after the second one. The first one did perk me up but, I still got hit with a few bouts of dozy-sleepy stuff. How weird is that?

Will see how this next dose does. It sounds like the coffeee drinkers here take it mostly in the morning and then taper off during the day toward the evening (Except for Elaine :)). I'm going to try that.

Thanks Jo*mar,
I do take 1000-2000 mcg of Methylcobalamin in the morning on an empty stomach and I do think that it helps with the general fatigue, but this sleepy stuff doesn't seem to be affected by it, even with an increased dose (4000 mcg).

With love, Erika

Hi Erika,

I drink coffee but only because I like it ---with a non-dairy creamer :)

Coffee does not help my fatigue nor does it give me more energy. It can cause an increase of shaking.

Coffee is like any other simulant I have tried --- they make me more tired and shaky.

I drink coffee all day, often having my last cup when I crawl into bed at night. Doesn't help my fatigue but I do get a wicked headache if I don't have it:o

I tend to think all the things we try for fatigue stop working/wear off after a while. I tend to need to switch up "my bag of tricks" now & again - regardless of what Rx pill, alternative treatment etc. (sigh). I can offer that I still need my nap, no matter what I take for the fatigue.

"...they make me more tired and shaky"

I'm finding that it does that to me as well by the afternoon, but at least it does perk (pardon the pun) me up in the morning. Maybe the shakes and tiredness will wear off once the body adjusts to it.

This afternoon I bought a pack of cigarettes and have smoked two. I used to smoke them in college to get through the long nights of studying.

BAD Erika...Bad!
It did make the body feel better though :D.

With love, Erika

hi erika,

i think for the kind of fatigue you're describing it's important for you to see your dr. this is a bit more than MS fatigue IMHO.

it could be dangerous for instance if you were driving or operating machinery etc. you might even need a sleep study, and/or another type of medication might work better than caffeine.

please share this with your dr.

I take 2000mcg B12 & 1/2 a 200mg caf pill soon as I get up to counteract the 40mg baclofen at the same time. I yawn much less. One can of cola/ice/water with lunch. Testosterone also helps me greatly.

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? :eek:

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

Erika have you ever had a sleep study?

Hi Doydie,

No I haven't.
I asked about it a couple of years ago and was told that the sleep clinics up here mostly check for breathing problems (apnea); and I'm pretty sure that I'm OK in that department. If the HUG is going on, breathing is sometimes difficult...but I'm not usually sleeping much then. My PCP didn't think that I needed a study.

Spasms in the legs wake me up most nights, but my sleeping pattern has been unchanged for years.
I stretch and meditate for an hour or so before bed, go to sleep for a couple of hours, am up for an hour or two around the middle of the night, during which I stretch and meditate some more, and then go to sleep for a few more hours.
5-6 hours of sleep/night is plenty for me; but I meditate for around 5 hours out of every 24, so the body and brain do get their rest.

With love, Erika

I love coffee! I drink it black and usually have 2 cups in the morning and sometimes a small cup at lunch time. It defintely helps wake me up. I also chew Big Red gum which I think helps me stay alert. When I used to work 16 hour shifts I drank it throughout the entire day.

The biggest problem for me is bladder irritation. I seriously have to pee every 15 minutes if I drink too much. I can get a little jittery and irritable but it is more about the excessive urination. Normally I don't drink coffee after 5pm or it can interfere with my sleep.

Erika I'd be concerned with the narcolepsy type component to what you describe and at least mention it to your doc. Good luck!

Thanks Jules,

The MS Neuro is trying different beds. So far no luck though.

With love, Erika

Erika,
i have bouts of falling asleep suddenly, even while driving:eek:
It worries me that it's kind of like narcolepsy. It doesn't happen often, but when that kind of fatigue hits, it lasts for at least 2 weeks. It isn't as if I'm slogging through the day; I just suddenly drop off to sleep. Once I was driving on the highway and awakened suddenly when I was about to introduce myself to the rear end of a semi-luckily I missed:rolleyes:

I do have sleep apnea; my neuro also got certified as a sleep specialist when he did his residency at Mayo. He said even small twitches can interrupt sleep…he told me a bad apnea score was 5 episodes per sleep study. I had 95:eek:

I use a CPAP machine. I still awaken at night, usually from leg spasms. Then I begin to start thinking, and I lay awake for a couple of hours. Sometimes I'll play solitaire on my phone-that puts me to sleep more quickly.

I hope you find some resolution to all of this sweetie:hug::hug:

just a thought to consider-

I was literally falling asleep working or eating, and dragging myself around in a stuppor most of the day. Docs all chalked it up to increasing MS related fatigue. Then my routine annual labs came in. My thyroid levels were super off. They had to jump up my synthroid dose.

Like my neuro said "good reality check - it isn't always MS in a MS patient";)

Just closed browser and lost properly worded reply (******) so..

Night spasms are one of the things I use to judge MS med or supps i'm on.
1 adult Aspirin helped night jolts for me.
I take 140mg/day baclofen, 2 with the aspirin + 1/2 a benadryl before bed.
Not a fan of meditation, MS would kill me if I stayed still that much & probably wouldn't sleep good.
Your sleeping is ng. Bod makes growth hormone & others during deep sleep. How bout a estrogen/progesterone check?

Deep sleep is associated with the Delta brain wave, which is the same one that is pronounced during meditation.

I stretch before, sometimes during (if I am sitting for more than an hour at a go), and again after meditation sessions; so being still for the meditation actually brings relief from spasms and pain more often than not.
I used to sit in a full lotus, but now it is more comfortable to sit in a looser cross legged position on a chair that has a back for support, or on the floor while using the wall as a back support.

My hormones were checked a few month back and all were good then.
I'm going to check on the thyroid again though, because mine conks out from time to time.

With love, Erika

I'm going to have to back off on the coffee because the digestive system has been getting progressively more irritated over the last couple of days, and the joints in my hands and wrists are painfully inflamed again.

I've taken some Ibuprofen and did an Epsom salt soak for the hands around midnight which helped, but I really don't want the joints to get worse or swell again.
The digestive inflammation and joint irritation seem to occur together, so I need to get the digestion settled down...and that means no more coffee.

Ah well, it was worth a try.
I'll have a consult with the MS neuro on Wednesday.

With love, Erika

I cannot drink coffee, for various reasons, but it's OK. because I hate it...:D:p

that's OK sally - I'll drink your share of the java for you:wink:

Lots of coffee. I need it. Non-stop thru around lunch.

If I drink coffee after lunch it makes me drowsy. I think it heats up my body just enough the heat effect kicks in.

Depending on severity of relapse, I take 200 - 600 mg caffeine pills as necessary daily. I've dropped down on this dramatically since the open heart surgery. I slept 4 hours a nite for many years while working 12-14 hour days.

Tom