Dealing with Daily Fatigue

[Friendship2]

Hi! I am dealing with fatigue and I see people are talking about it, but what can we do? Yeah, I know, there are meds to help, but those don't carry me thru the day, as they only last a few hours. I'm holding out hope that some doctor/scientist will figure this out and be a blessing. Thanks to all out there who are listening.

[Jesmcd2 CommunityAmbassador]

Hi Friendship2 Welcome to the MSAA Community 😊 Although the reason stinks. All I can say is, I hope you find as much Love and Support as I have here.😊

I had a really hard time with fitgue when I 1st joined here. So I know the feeling well. 😴 I would talk to your PCP again and try something else. What works for me, might not work for you.

And a 5hr energy works wonders for me sometimes if there's something important at night I have to go to. 😳

Jump in anywhere!

Jes 🌠👻

[KDenes in reply to Jesmcd2]

I have found armodafinil helps me the most with daytime fatigue. It is a prescription your doctor might need prior authorization for but it’s worth fighting to get because it really helps. Also great lakes gelatin has a energy drink with hydrolyzed collagen, vitamins

in it and caffeine that really helps when you exercise or have to do any type of extra activity!

[Friendship2 in reply to Jesmcd2]

If I take something later in the day, to help with enjoying an evening event, then I have trouble sleeping. Even if I take a sleeping pill. Then I get what I call the "MS hangover" the next day, as I am unable to do anything. My life seems to be an "every other day" lifestyle.

But life isn't perfect that way

[Iona60]

Friendship2 Coffee really helps me in the AM. I wish I could drink it all day, but if I do, I keeps me up at night. I've tried many of the meds. Each felt like I had just drank multiple cups of coffee and also kept me up at night.

On the other hand, some of the DMTs lessen your fatigue. I've heard that Tysabri is great for fatigue.

[Raingrrl in reply to Iona60]

Iona60 ...I'm with you about the coffee. It helps me in the morning but as I've gotten older, it will keep me up at night if I drink it any later than mid-afternoon. I've tried several meds. Provigil and its cousin Nuvigil helped somewhat but not a lot better than the coffee. Others I've tried haven't helped at all. Tysabri has kept me stable for 5 years but hasn't helped with fatigue. I think my problem with M.S. fatigue is compounded by the insomnia I seem to have more often than not. Sigh.

[KDenes in reply to Raingrrl]

Trazodone rx even a 25 mg dose Helps me a great deal to get better sleep at night and not wake up as much!

[Friendship2 in reply to KDenes]

I think I didn't respond well to Traz. I'm glad it's helping you.

[Friendship2 in reply to Iona60]

I heard the same about Tysabri. Unfortunately, I am secondary progressive, and it hasn't shown benefits for slowing progression, so doctors won't prescribe it.

[Corran731]

I’ve found a couple of things that help but I only use them when I really need them as they both raise my blood pressure. First, Ritalin. For me the immediate release works better and is more flexible because if you take it too late it will disturb your sleep. However, the crash that follows can be brutal. The effect lasts about 4 hours (as opposed to 8 hrs with the extended release) so timing is everything. Second, of all the energy drinks, Rockstar works best for me. I don’t know what the difference is but It seems to have a B vitamin that the others don’t have that makes a noticeable difference. Downside, I have to go to the restroom more often so when I don’t want this annoyance I’ll use the 5 hour energy.

[erash]

Friendship2

I use nuvigi. It helps but I have days that simple chores force me to take frequent rest breaks.

I'm not sleepy tired, just empty battery ☕️☕️☕️

[Amore55]

Friendship2. Fatigue is such a difficult challenge, isn’t it? That and excruciating pain are my enemies. I haven’t found any great solution except to crawl into bed very frequently throughout the day. I let my body rest for about thirty minutes or so, then try again. And to be honest, my ms is so bad now some days I just stay in my nightie all day and only do what I absolutely must, otherwise I have a stay in bed day. Those are the days I cannot walk and I just fall down, so I am safest in bed! 😆😜🤣 I hope you find something to help you. Good hearing from you even though it is for a problem. You are already part of the family! Love, Kelly

[esther57]

I have been struggling with fatigue for 25 years . Now I’m switching around the medicines I’m taking to see if that will make a difference. If that doesn’t help , I’m going to give some of the anti- fatigue meds another try. In hopes That my body has changed over time and that maybe now it will help me.

I’m willing to try anything.

Good luck to you!

e

[ynggal]

I start the day with a big cup of coffee. I take Amantadine 100mg 1-2 times a day if I feel like I need it. One thing that's really helped me and that's made a noticeable difference is boosting the protein in my diet. There are so many good sources of protein besides just red meat. Rest when you need to. Even if it's just for 10-15 minutes here and there. Hope you figure out what works best for you.

[melack01]

My fatigue used to be real bad, but it's been a lot better since the endocrinologist adjusted my medication for my hypothyroidism. Just to keep things in perspective... it's not always MS that's the cause.

[MarkUpnorth]

Here he goes again,...sativas sour diesel canabis. Wonder drug for fatigue. Still use caffiene, coffee or 200mg pills (over the counter), but that only helps slightly. Been on Provigil & Nuvigil, but that only helped to keep from falling asleep during the morning rush hours. When not going to drive at all, I'm a whirlwind bursting with energy on sour diesel, vaped or edibles. Okay, bursting with energy at my age is nothing compared to my neighbor's toddlers!

[Qt314grl in reply to MarkUpnorth]

I really wish it was legal in my state!!

[MarkUpnorth]

It will be, someday. It's going nationwide state by state. Nationally it's in the 60's (% approval). Beer manufacturers and big pharma are investing $$$$ in it. It does work like no script I've ever taken, and I've taken way too many. Thank my neurologists, no opiods!!!

[Friendship2]

Thank you for all of your replies. I have tried all the "energy" pills. And as listed, I've experienced the short acting effects and the good and the bad effects. I've been wearing a fitbit to track my sleep. I'm going to ask my neuro if my sleep pattern may have something to do with my fatigue. I don't seem to have proper sleep cycles. My sleep cycles looks like a horizontal ECG cycles.

[CalfeeChick CommunityAmbassador]

First of all, Welcome to what I hope will become your new MS Family, @Friendship2 I hope you will find some answers to your needs and when you are ready, feel free to comment with others. These are suggestions meant to help you. From what I see, and I'm sure not an expert, it seems you need to put yourself onto a schedule that will allow you to get needed rest. Write out something that is workable with your life and family needs, include some power naps here and there. Or if you can a couple hour nap in the afternoon. I sure didn't seem like a nap person, but when MS arrived, I became a nap person quickly! Not sure of what meds you are taking, my doc RX'd Modafinil 100mg. twice daily. The first time I took it, it was what I would imagine being on speed.. Gradually, I've adjusted to it and can actually take 3 a day. 1 in am, 1 at noon 1 at about 3PM. My doc makes sure I've enough to take 4 a day, but that hasn't happened. It is to increase my focus and energy and it does. I sometimes just take a half in the afternoon. What has been my biggest help "energy wise," is I just recently started taking Low Dose Naltrexone, LDN for short. It requires a prescription, a compounding pharmacy. Research it thoroughly, it is only FDA approved at a 50mg dose to fight alcohol/opioid addiction. In lower doses, 1mg, 2.5mg, 3mg, or 4.5mg is being used to treat many autoimmune diseases. I weigh more than I should so my doctor started me on a 4.5mg. dose. I was fortunate to find a compounding pharmacy less than 50 miles away. In just 2 weeks at 1 a day first thing in the am, with a full bottle of water. I have more energy than I've had in over a year! You may want to check your insurance formulary to see if there is any coverage for it. Most insurances do not cover it, with it not being FDA approved in those lower doses. What does it do? It blocks some of the nerve cell mis-fires and allows your own endorphins to surface and get you some energy. I have no side affects or medical interactions with my other MS "Symptomatic" meds. When looking for a compounding pharmacy, don't be hesitant to ask for prices and shipping needs. Just Google Compounding Pharmacies. I haven't started any DMT's as I wanted to see what I could do with healthy diet and meds to just treat symptoms. Message me if you have other questions. Lynn aka CalfeeChick

[Friendship2 in reply to CalfeeChick]

Thank you. I will def check out LDN.

[Friendship2 in reply to CalfeeChick]

Also, I do take naps. That's what I would like to get away from, as a midday nap sure interferes with me getting a job.

[ssdw1958]

I know the feeling and it is a tuff one to deal with here it is 2:23pm and I am tiered and let’s face it I’ve done nothing today. I don’t have meds for this and I don’t want to take anything, Before MS if I got a headache if I could I would have laid down and tried to Get rid of the headache. I am just saying this because I didn’t like taking medicine because now I have to. But seriously if they had a medicine so I could have some get up and go I would try it out.

[esther57]

Thanks , for the idea of taking modafinal more than once a day . Also about naltrexone. I’ll see if my doctor will prescribe that for me. The last doctor I asked for it wouldn’t. But that was a few years ago. Thanks for reminding me of it. Two great suggestions I haven’t ever tried!