Fatigue with MS

[Jesmcd2]

I'm pretty sure we have all had it. And there is nothing on this earth that can wake you up! Or lift the remote. Or move. It's just not happening.

What are you doing to combat this horrible symptom?

🤗💕🌠

[hairbrain4]

I used to take modafonil for fatigue. I no longer need it but it worked. Again its another pill to take. Otherwise ice seemed to help when my muscles didn't want to work. I guess it woke them up. Ice seems to be my goto for muscle help. And drinking lots & lots of water. (It'll keep you moving 😊)

[falalalala]

I try to get the important things done in the early morning when I have the energy.

[NorasMom in reply to falalalala]

Ditto. Back in the day, I got up an hour early just to get things done before work. Now I don't have to worry about that part, but my best time has become from 10 am to 2 pm. Outside of those hours, don't expect me to do much more than breathe.

[falalalala in reply to NorasMom]

After 2 pm is my slide towards stationary bliss.

[bxrmom in reply to falalalala]

I do the same thing! Because once 2-3pm hits, nothing else really gets done.

[TonyiaR7 in reply to bxrmom]

yes, I have 10 am - 3 pm. Then nap time. Make some dinner. Then that is the day. I rest sitting up after dinner, so I can digest or maybe water plants. Nothing that is cerebral taxing. Maybe send a few cards. If I don't get a good night sleep the next day is terrible. Not functional until 1-2 pm. With my husband retired I can't stay up with him. My entire sleep pattern has been thrown off. I can go to bed early to be waken at 2 am. I pray I don't get spasms or nerve pain at night. So I know that fatigue and my face/speech says it all; or I am sound asleep where no one can wake me up. My son had used ice against my neck and all I remember saying leave me alone. When my brain clicked in, I realized it was time for him to take me home. I slept the entire 1hr drive home. Sometimes slept in the car extra 10 minutes before getting out.

[Helpmeup]

Oh, the fatigue is a killer! I cannot function in the morning. I sleep late, and ease into my day slowly. I never schedule anything, including doctors appts, before 3pm. Any housework that I feel I can tackle gets done in the evening, when I have energy. When my body tells me it's time to sit in my recliner and do nothing, I have no choice but to listen. Learning what times of day you have energy and can function and when you can't helps a lot to plan around it.

[StacyHayward]

I take amantadine. I tried weaning off it a few years ago but the fatigue was so bad I went back on. Naps are my friend. As long as something is accomplished each day I don’t feel guilty.

[stepsforNeeC]

As much as I hate it; exercising in a strange way reboots my energy. But on rainy days- it’s the bed and “smooth jazz.”

[Elizt3 in reply to stepsforNeeC]

I agree - exercise does make a difference. I need to make myself even if I feel I don't have the energy. Ahhh. Smooth jazz is great!

[stepsforNeeC in reply to Elizt3]

Yes…. Bob James, Herbie Hancock or Kenny G. Ahhhhh; especially “Injection Day.”

[Elizt3 in reply to stepsforNeeC]

and Dave Koz!

[stepsforNeeC in reply to Elizt3]

Yes…. Opps I forgot my fav - Mr. Boney James! The list goes on and a good smelling Bath and Body works candle!

[Squirrel1270]

I find that when I need that extra boost, a 5hr energy shot helps. Then again, sometimes it makes me more tired. Can't win for losing with this mess... 🙄

[Greentime]

I sleep in a bit and then get things done in case I need a nap in the afternoon. Less often lately, thank goodness. At its worst I don't know how I am going to get up to my bed. Sheer, utter exhaustion. I just love it when someone says, "Oh, I get tired too", I have given up on trying to explain that it is different.

[mrsmike9 in reply to Greentime]

I have heard that from people and it annoys my every nerve! I want to scream, "but you can still lift the remote or a book!"

[CatsandCars in reply to Greentime]

Agreed! I wish there was a better name for it. "We all get tired" really pushes my buttons! I don't see you quitting your job or staying home all the time just because of the herculean effort of getting out of a chair, let alone getting out of the damn house. I dread dragging myself through the shower, especially if I have to dry my hair. Then getting dressed and attempting to make myself presentable...every step of the way it seems insurmountable.

And I really haven't found a way to deal with it. I used to love coffee and I took modafinil too, but then I started having problems with unwelcome, irrational anger and I had to stop taking stimulants. 😢 Not to mention that I am constantly developing new or worsening problem that demand more medication.

[whwiechm]

Since my MS has progressed, I have been less physically active, and I thought it was my muscles not getting enough exercise. From what is posted here it may be another symptom ofd the progression. I also seem to have more capability early in the day and struggle more in the evening.

[Greentime in reply to whwiechm]

I will say, whwiechm , that I have had less fatigue to deal with since gaining more muscle.

[Neworleanslady]

i have lots of fatigue. I feel i need to get back to doing more strengthening exercises. I like drinking alani coffee energy drinks (i like vanilla the best) for a temporary boost.

[Scout4x4]

Fatigue was a major issue for me. To combat the issue my neurologist put me on extended release Rittilin and 10mg immediate release.If your not ADD the Rittilin is a very strong upper.

[Wtfisup]

I’m too fatigued to look at all the replies people are putting, that they use to fight fatigue. 🥱 When I sleep I can fight fatigue a tad bit better. If I nap, can not sleep at nite. My fatigue is overwhelming. However, not enough to make me fall asleep. Then my mind starts to wonder to woe places. So I meditate, yoga, pray, use singing bowl, breathe, breathe again.

First prescribed amantadine in 1995, no change. Next was adderall, definitely helped. In 2017 was suggested I switch to Modafinil due to adderall may have problems long term. To me, they work the same.

No one told me to, however I have tried taking less I’ve of many of my meds, at different times, to see if I can take less. I let doc know and I’ve had success with several. Not Modafinil, I need it. Cost is ~$1600/month without insurance, $45 after prior auth.

Hope today is a good day!🫧

[carolek572 CommunityAmbassador]

I can go for days without doing anything, Jesmcd2 . Do you know that it has been 2 years since I moved to AZ and I am still unpacking!

[Jesmcd2 CommunityAmbassador in reply to carolek572]

😂🤣😂🤗💕🌠

[kdali]

I've been through many seasons of fatigue, with a variety of solutions; a ketogenic diet, caffeine, Ritalin, exercise, sleep hygiene. Sometimes nothing would work, and just had to wait until I got past a rough patch. I read through responses, many were true for me too! Shorter shifts at work, nap, make dinner, bedtime. I don't think I read about spasticity. That was exhausting. I actually had more energy for the day once I sucked it up and asked my MD for baclofen (hate to admit when you're getting worse, you know 🤦‍♀️).

It's all very different now, and I'm not sure what to expect moving forward 🤷‍♀️