Fatigue

[Booda]

Questions about fatigue: i have had MS for 3 years and it seems I am sleeping a lot more. I may take. 1 to 2 hr nap during the day and than sleep 11 to 12 hrs at night. Is this somewhat standard? I am taking 400 mg of provigll to help with the fatigue

[Miriade]

Hi Booda, I am in similar sleeping time and fatigue as you mentioned. My official diagnostic was only in 2014. I take Methylphenidate 36mg ER to give more energy to me and works not alone. I bought some special teas that really make me fell better to keep the day and better mood. I mix 3 three teas in a big pot and take during the day. They are: Centellha Asiatic, Ashagndawa(i dont remember the speeling of all in the ayurverdic), and Bacoba. I add one tea spoon to 1,5 L after boiling water and divide in bottles to take during the day. They improve my energy, my mood( anxiety) and better focus and memory. In the afternoon I take another fresh brew in a "mug" of medium roast arabic coffee to get more energy for the evening or as option I make 3 organic green tea bags which aldo has caffeine and L-theanine and improve brain blood circulation. I guess the green tea is better option because does not make peak spike caffeine and last long energy with more good effects for the brain.

It is not complicated, just add good quality tea daily in your routine and you will fell addition results to your medication together. Works!

[rjoneslaw]

I sleep a lot as well. I don't take anything for my fatigue For me mine hit me more so after I take my meds. Then meds I take in the afternoon I can fight off the need to sleep if I'm actively engaged mentally. When I take the evening dose no matter what I'm doing my mind shuts down and I have to go to sleep. Just say I have fallen asleep in some crazy positions and I make sure to be home when I take the evening meds. I don't want to fall asleep in some strange place.

[Booda in reply to rjoneslaw]

@rjoneslaw, this has really just hit me in the last couple of weeks and meds have not changed. Frustrating sleeping 12-14 hours per day. Lucky to be retired

[greaterexp]

Fatigue and lethargy were big factors during my relapse, but the sleepiness during the day isn't an issue now unless I'm not busy.

Others may have a different take on it, but if you need the sleep and it works with your lifestyle, I think it's not a bad thing to just sleep. During my relapse, I didn't have a choice!

I hope your energy levels improve soon.

[Booda in reply to greaterexp]

greaterexp , in reality the real issue is that I have always been active and I am frustrated dealing with the fatigue

[Fee09]

I had that issue for like 4 years (diagnosed in 2013), then a year after diagnosis I was told about vitamin B supplements to help with the fatigue. I've been taking a multi-vitamin, B supplement and vitamin D together for the last 3 years and it has made the biggest difference. I still get fatigued, but not to where I'm needing a nap everyday or sleeping excessively at night. I hope this helps

[Booda in reply to Fee09]

@fee09, thanks but I have been on vitamin b and the real fatigue just hit within the last fey week and meds have not changed

[Dpjinx in reply to Fee09]

How much B & D do you take? I take both daily and doesn't keep me from being fatigued

[Fee09 in reply to Dpjinx]

I take a super B-complex that is a metabolism booster. I take 5000 iu if D3 daily. The first B supplement I was taking didn't do anything then my pharmacist recommended this one. It has C, thiamine, riboflavin, niacin, B6, folate, B12, biotin and pantothenic acid. It has made a big difference. I have a few days a month of fatigue versus everyday and it's usually following serious errands

[Vinagirl in reply to Fee09]

How long did it take for the vitamins to take effect?

[Fee09 in reply to Vinagirl]

I started feeling it after about 7 days, and the full effects came over about a month.

[Dpjinx in reply to Fee09]

Thank you very much. I'm going to try this 😘

[agate]

@Booda, I've been taking a daily nap for all of my years with MS. Sometimes it's not possible but I suffer when I have to do without that nap. It might be only 20 minutes or it might be 2 hours but for me it seems to be essential.

[Kevin_McMillan]

@Booda, I have had MS a long time but not Dx'd until 2012, looking back I had my first episode after mono my Frosh. Yr. In HS. I has some fluke back injuries and sometimes at the gym i would be down 50lbs on bench press! My point is the last couple of years i have fallen off! I dont only sleep a lot after a flare up or seizure but all the time. I dont have any real good days anymore, it has been a long time! I'm Sick and tired of being sick and tired!

You all take care and get your rest😉

[Booda in reply to Kevin_McMillan]

Kevin_McMillan sorry to hear about your issues but yes we get tired of being tired. I have always been active so sleeping 14-15 hrs per day is frustrating.

[Jesmcd2 CommunityAmbassador]

Hi Booda l take Modafnil twice a day and 4caffine pills. I hate coffee😅😅. I can usually go full blast till about 1 or so. But after that, it's my time to do what l want, and if l need a nap lm going to take one.😊 Then again l can go a cpl months full steam, then remember who really is in charge 😕😠 Then sleep for days.😢

So take your nap☺

Jes 🌠

[Booda in reply to Jesmcd2]

Jesmcd2 i believe I could accept a 1 to 2 hr nap but than add a 12 hr night really bothers me. And that is what I am going through now. All meds are the same except I changed to Tysabri in Feb from Aubagio . Who knows? Good thing retired and really do not have a lot to do

[greaterexp in reply to Booda]

Sometimes, it's seems the biggest frustration is dealing with changes, especially changes in activity and strength levels. I'm still learning to accept the new me, as I've always stayed busy all day every day, too. I hope this lethargy passes soon for you and that, meanwhile, you feel less frustrated with your body's need for sleep.

[alliepoirier]

Hi @Booda

I had the same fatigue problem, and had to change things up a little to beat it.

I work full time, and I had to do some testing with my meds.

I had to figure out which meds caused me fatigue:

number one was gabapentin/neurontin. I used to take them 3 per day during the day. That was definitely contributing to fatigue, so now I take my neurontin (gabapentin) in the evening at about 7 pm.

the second contributor was citalopram/anxiety. That one I take around 12 noon, instead of first thing in the morning.

I take Nuvigil, which is the absolute miracle drug for fatigue. I take that one first thing in the morning, with my Aubagio.

The good thing is, I was able to work with my HR team, and get a reasonable accomodation to work from home, and although sometimes the stress of work is killer, I love to be able to contribute in a meaningful way.

I think boredom is the enemy of anyone with a life altering disease. Having a reason to get up in the morning, and get moving is for me, the only thing that keeps me going.

However, everyone is different, and that is just me.

If you are frustrated with the fatigue, and you want more energy at certain times of your day, I would suggest figuring out which of your meds are contributors, and changing the times you take them.

If you are ok with sleeping, and your body just needs it, then you should let your body tell you what it needs.

ps if you dont take Nuvigil, I would talk to your Neuro about getting a script for it, it has been a life-saver for me.

Best to you, I hope you are feeling better, and can beat this fatigue

[Booda in reply to alliepoirier]

alliepoirier Thank you for the input. I take 400 mg Provigil in lieu of Nuvigil

[agate]

@Booda, the 12-hour sleep at night plus the nap does seem like a lot of sleep. I've often heard that sleeping a lot can be a sign of depression though you didn't mention that as an issue you're having. You might want to look into the possible side effects of any medicines you're taking and see if one of them causes drowsiness.

[Booda in reply to agate]

agate Thanks but I really do not believe depression is a part of it. I have had this discussion with my primary care doctor, Neurlogist (MS specialist) and pain mgt doc and non believe depression is involved.

[Fee09]

I never thought about it until reading the comments, but I drink a least a cup of dark coffee a day and if I don't I'm a bit off, so I guess the caffiene is also a big thing for me too. I've been dealing with the fatigue and other issues since 03 without dx till 2013, so it takes looking at others experiences to put some things together.

[CalfeeChick CommunityAmbassador]

Hi, I'm only 10 months into trying to get a definitive DX. Will report on tests etc in different post. I'm taking afternoon naps or rest times every day and sleeping 9-10 hrs a night. And still feeling tired, not focused most of my awake times. I'm in period of agitation right now, so will wish you well and go get some more rest. BTW, I am taking 300 Gabapentin 7 times a day and was just RX'd Modafinil (generic Provigil) 100mg X2 daily, but have to wait for insurance authorization before I can get started. Grrrr..

[Booda in reply to CalfeeChick]

CalfeeChick , I take 1800 mg of gabapentin per day to your 2100 mg and take 400 mg of provigil. Hope your insurance comes through

[nes78]

provigal never helped me. before turning 30 i was on ssdi partially because of fatigue. my lawyer said that was one of the main reasons people w. ms are on disability. i was falling asleep standing up, on the toilet, everywhere. it was seriously debilitating. sleeping all day - way beyond just tired. it's a very real problem.

[RobertCalifornia]

I sleep about 10 hrs a night. Rarely take naps but do have a slow period in the late afternoon. I take a sublingual B12 that seems to boost my energy level. My neurologist who is a MS specialist told me not to sleep more than 12 hours per night. If I need more sleep then take a nap in the afternoon. Four yeats ago before diagnosis I would sleep 6-1/2 to 7 hours per night. I did have fatigue problems from 1 to 3 pm when working. I am on disability now, but I don't want to sleep my life away. I try hard not to waste energy by planning my activities.

[Hidden]

Well now, hello everybody. It's a quiet, calm, fatigue-filled afternoon here in Niceville Fl. After reading the multitude of posts and replies, I realize the my chronic fatigue is shared by many. I thought I had a monopoly on this, as well as hyper-sensitivity in both LLE's. This feeling is very similar to the pain one feels when scalded by hot water or steam. Supposedly, it has something to do with the sensory nerve clusters, located mid-calf down to the tops of my feet. I have found that the more hydrated I am, the less the "scalding" I feel. So, it would seem to make sense to keep hydrating, yes? Diagnosed in 2011, I have found that most medication dehydrate the body. Some, more than others.

Many folks mentioned about the various vitamins / supplements, and dosages, they took take aid with situations. This question is for anyone, and everyone, taking supplements. What methods are used to determine what vitamins / supplements / herbals you use, and who makes those suggestions / decisions? Oh yes...liquids. For me, tea and coffee intensify the scalding feeling, so they aren't part of the hydration.

On medicines, I recommend looking up drug interactions for the medicines used. My neuro recently prescribed Ritalin to help with my chronic fatigue. Hmmm. Ritalin is used to slow down a child's activity level. Yes, I'm a kid at heart, but, Ritalin. Researched, I found that Ritalin increases the drowsiness provided by 2 other meds I take, as well as slowing down the metabolizing of another med. I've tried the Ritalin for 4 days now, and it help with alertness, as long as it's not taken before the other meds have digested.

Booda, I,like many others, understand and feel the difficulties of not being able to do things that we used to do, and / or want to do. Nowadays, for every bothersome thing or thought I have, I recall about some of the exceptional things I have experienced. The 9.8sec 100-yard dash in 8th grade; the humpback whale that brushed the entire length of the 24ft boat I was aboard. And the whale was longer than the boat! The moment I realized that some eagles were flying by, at a level 50-60 feet below me. I'd climbed a bit too high. One last one...the time my "mates" and I lost the Hash Hound trail. We had climbed high enough on the hill to find the Bimblers (walkers), and realized that we were standing in the clouds. Yes...have the picture.

My apology for rambling on, so allow me to sum it up. Having accepted that I was misdiagnosed for 13 years, and was diagnosed at age 55, I realized I had the opportunity to experience a lot. I'm 61 now, and review each day to see what made it "a once in a lifetime day". May seem corny or foolish, but it works...good or bad day. As concerns fatigue, especially chronic, I experience that every day. My left leg can still "walk" (only when I force my mind to lift the muscles). My right leg is locked tight, when I stand. So, I "hike" m'leg 'round and f'ward, and off I goes. I get quickly fatigued walking across the carpeted floor. It's always the beginning of a new day.

Ultimately, reminisce in what you have done, accept that which you can no longer do, and begin doing that which you can. Have a nice day. In fact...have many. C-Ya.

[erash]

Booda some good suggestions here.

Definitely consider med side effects. If not recently done, perhaps lab work to assess for deficiencies, thyroid, anemia etc. Sometimes sleep apnea can interfere with quality sleep and cause daytime fatigue.

I ❤️ My (brand name) Nuvigil. It keeps both my body and mind working thru most of the day. But I try to get everything done early. An afternoon nap is often needed.

[Booda in reply to erash]

erash thanks for suggestions. All considered already. Only issue was thyroid needed to be increasesd small amount

[Taylorsmom]

Hi Booda I was diagnosed just this year with MS. I've always considered myself to be a bit of a sleepy head but never paid it any mind. When I was diagnosed, my neurologist showed me that I have many lesions on my brain which makes him believe that I've had MS for many years and I would have to agree with him. I now feel more sleepy than I have ever felt. I can't take naps at work but as soon as I get home from work I take a nap, sometimes unwillingly lol. I too wonder if this is standard/normal for someone with MS. I don't take any medication for fatigue, I just try to push through. I don't really know what to do these days, should I push through, should I do what my body is telling me to do and take a nap, etc. I push through a lot of things because I feel like if I give in, my MS will take over but at the same time, I don't want to do more harm to myself by not listening to what my body is saying. This is all still new and confusing to me.