The fatigue is really getting to me at the moment. I feel so groggy and whenever I sit down, my eyes get heavy and I just fall asleep. I honestly feel like I'm 37 going on 87. I can even be sat with a cup of tea or coffee, doze off and wake up to it tipped all over me. Likewise I've fallen asleep eating dinner plenty of times and on the toilet. It does come and go, but recently it's been awful.
Had a few tests done to rule out iron deficiency, narcolepsy and sleep apnea. It could be my meds but I think it's general MS fatigue.
Just wondering if anyone else is like this?
Amy x
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MSAmy87
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I only get like this when I'm in the midst of an exacerbation. If you've recently developed any new symptoms that have lasted longer than 24 hours, you should probably contact your neuro.
I understand exactly how you feel. I used to have to take naps every day. Then I learned about Alpha Lipoic Acid 600. It's similar to a vitamin and I no longer need to nap.
i have had this a few times last week,i wonder if it was because of the majoy heat with have been having ...i had never fell asleep with coffer in my hand before but i have several times now ...doesn't feel very good ...hope it stops and you get some good sleep at night ...good luck ...love and much happeness and lots of sleep...take care ...
I definitely have the same problem. I do feel that my meds are a part of the problem, but not all of it. Fatigue is a pretty complex issue, because MS can be causing it, along with meds, sleep issues, and depression or anxiety. I just did a test for sleep apnea, as well, which I don't have.
Dr. Aaron Boster of YouTube has several videos about fatigue, and he suggests exercise, cutting sugar and processed foods from your diet, drinking a ton of water. treating any depression even if you don't feel that depressed, getting enough sleep, etc. His videos are really educational and well worth watching.
Have you talked to your doctor about stimulants? There are a few meds out there that can keep you awake. Unfortunately, I get pretty irritable and angry at times, to the point where I've even had to give up my precious caffeine. But it's worth trying a stimulant med if you haven't already.
That leaves the question of how to handle it when it does happen. I feel like I can either take a nap, which for me stinks because I have a hard time waking up in the morning, and if I nap, I have to go through that whole process of waking up groggy again. The other option is to just get up and find something to do that will keep me moving for a while. I like to walk on the treadmill a little bit and play some loud rock music. Then I'll use some small weights, do a little stretching, and transition into light household tasks like emptying the dishwasher, cleaning the cats' dishes, cleaning their litter, etc. The music really helps, and I feel a sense of accomplishment. If it's not too hot, you could just go for a walk. The point is just to move and stimulate your brain. Talking to a friend helps me, too. Of course, this wakes me up, but the sleepiness often comes back later. This has been a difficult part of MS for me for a long time. I hope that you're able to find a solution that works for you.
Another thought...when I got tested for sleep apnea, it was this electronic ring that was mailed to me that ruled out apnea only. There are more in-depth sleep studies in which you spend half the night in a strange place being monitored for other sleep disorders.
Maybe a good first step would be to look at your meds with your doctor to make sure they're not adding to the problem. You are most familiar with them, but it would be an easy fix, so it's worth checking.
Amy87 - it has happened me! was dg. at 23 and on ssdi at 27 in part because of fatigue. i would fall asleep everywhere and the meds available then did nothing for me. i fell sleep standing up and woke up when i hit the ground. was beyond exhausted no matter what.
it's not just you! have to say, i've been tired most of my life though in retrospect even though i slept well, worked and went to college. i'm in my 40s now and it's not as bad but i had hsct (stem cell transplant) over 10 years ago.
I've had a few bad rounds if extreme fatigue. The worst lasted about a week. I could only stay awake for about 10 minutes at a time. Answered nature's call in one 10 minute awake time. The next one, make a sandwich and probably not eat but a bite or two and was out again. It was awful!!!
Greetings. Early on I was falling asleep in the middle of everything ( eating, conversations, etc.) . Recently I've doing the same but not as severe. It's one of those things that comes and goes. It limits you to not go out as much until it eased.
I wasn't quite falling asleep as you are, but for about a week and a half, I had what I called very low energy days. Much lower than my usual low energy. I did end up napping most days, usually two or more times. It just ended this last Friday, I woke up with a tiny bit more energy, and I've slowly gone back to my usual low energy. The only thing I could think of, was that maybe I overdid it the first day (maybe). Or maybe it was just a weird MS thing. I'm only 7 months into this diagnosis, so I have no clue 🤷♀️
I hope you are able to discover what is causing this and get more energy! Sending hugs your way! 🧡
i am gonna ask my doc about stimulant meds because i get tired too. I tale ala at night because that’s the only time i find that i have an empty stomach which I thought i read is best when you take ala
I am going to check out the alpha Lipoc acid 600. I just recently had to switch my primary care dr. and he said I didn't need to be on Adderal. He won't prescribe it. Not even the zolpidem (sleeping). I have to check with my neuro.
I went through that about a week ago and it lasted several days. It did not matter how much sleep I got at night. I thought I'd never stay awake again! It's much better now. Not gone, but better.
I’m taking 60 ml of Adderal in the morning and Amantadine in the morning and at two and still have fatigue. I wake up slowly and get up around nine but am napping again at about two. I have fallen asleep eating and texting, broken a few screens on my phone. Depending on how much I did that day I’ll go to sleep anywhere from seven to eleven. I get up frequently during the night to go to the bathroom and yes, I’ve fallen asleep on the toilet too. That one is a rude awakening!
I have the same issue and cannot figure out what is causing me to just fall asleep. I've never been able to sleep with a TV on or any noise and now I just pass out with the TV on. I've tried medicines to counter fatigue, and they do not help. I feel for you and cannot understand what is happening.
in limboland here, but yes, there are days when i can't sleep no matter what and other days when i can't keep my eyes open. it seems rather arbitrary. i often say i'm a millennial stuck in an old man's body, lol. i even had shingles last month! what is that?
Fatigue has been a constant for me as well. When I was still employed and working, my neurologist prescribed several different meds to help with the fatigue but the ONLY ONE that actually helped was The Brand Name “Nuvigil” (not the generic Armodafinil and/or Modafinil). The generic brands were like having ADHD for the first 3 hours after taking it then I would crash. That was worse than just not taking anything. Unfortunately my health insurance would no longer cover the The Brand Name “Nuvigil” even though they had been for six years prior they just stopped bc it was too expensive. So I’m on my own now and still dealing with the daily fatigue and no meds for it. You are definitely not alone…..MS Fatigue is a “real thing” it’s too bad insurance companies do not acknowledge it as that and are allowed to control what we can and cannot have to help people with MS. It was a game changer for me and eventually I had to retire 6 1/2 years before my full retirement age. I’ve tried all kinds of natural home remedies but nothing works like Nuvigil did. I can sleep 10-12 hours and I still wake up tired & fatigued with little to no energy. Some days I just spend my time doing the things I know I can and others I just sit and do nothing, either way it totally robs me of my quality of life. I hope you find a solution for your situation, I don’t have the same experience of fatigue you are experiencing but any fatigue is too much in my opinion. BTW I take naps now as well and it doesn’t help with the actual tiredness and fatigue.
Sorry it's taken so long for me to reply, Amy. Dr. Boster (YouTube) double dog dares his viewers to exercise to combat fatigue. I took the dare, bought a $100 recumbent bicycle & rode slowly (indoors). Ten minutes on bad days. Twenty or more on good days. And he is correct - I feel better. I can't explain it. But I don't feel like 100 pound sandbags are attached to each limb. Previous to that knowledge, when I worked, I could barely get my makeup on, even sitting on a chair. It was agony trying to get thru a work day. Not saying I ride every day. But 4 times a week makes a difference. Best wishes to you!
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CAN'T WAIT TO START RIDING AGAIN
Amandatine for fatigue; anyone else on this? 
Anyone else dealing with this??
My eyes 👀 are being weird lol. And other things. With pics😝
Eyes
