FATIGUE: Hi! GirlsLikeMe here! My fatigue... - My MSAA Community

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FATIGUE

GirlsLikeMe profile image

Hi! GirlsLikeMe here! My fatigue is getting worse. I was diagnosed 14 years ago with RR and my symptoms have been mild. I had optic neuritis in one eye and my vision in that eye never completely returned. But now I am so, so tired! All the time! I am at work and I can barely hold my head up. Does anyone else have fatigue this bad? It takes all of my strength and effort just to raise my hand to write something or to pick my fee up to walk! If you've had fatigue this bad, how long did it last?

22 Replies

Hi! I’ve also had central vision loss from ON and awful fatigue. I use to manage it by never working two days in a row, only working 8hr shifts, taking a nap at 4pm, making sure I get 10hrs sleep per night, taking or drinking 600-800mg caffeine per day, eating a clean diet, spending 20min in the sun whenever possible or using a sun lamp, and walking several miles per day when possible.

After having a baby and being on call 24/7 with little sleep, my fatigue came back with a vengeance and I was put on amantadine with some improvement (now I take it just to help my legs).

Two weeks into the keto diet, I had tons of energy, required less sleep, and really felt like I was getting my life back. I took it seriously as a treatment, monitored blood levels and felt pretty good while even having another relapse.

Now that I’ve had Ocrevus, I feel amazing and i hope it lasts, but I have keto in case it doesn’t.

I did try one of the meds for fatigue in my prediagnosis/misdiagnosis era and it caused migraines.

I hope you are able to gain some tips to help you out of the MS fatigue quicksand, it’s a miserable place to be 🤗 I also hope you have been in contact with your MD to see if you’re having a relapse. My fatigue never went away after a relapse a few years ago, except during pregnancy, and it became my new normal. GL!

I second kdali thinking that you may be in a relapse. My relapses often happen like a snowball where they start out small and gradually get worse. Maybe you should call your neurologist.

I had one week where I struggled to stay awake longer than 10 minutes at a stretch. That was the worst episode of fatigue I've ever had so far. But I'm always in a state of fatigue. Most days I'm usually lights out by 9:30pm 10:00 at the latest and have no desire to get up when the alarm clock goes off at 6:30am. I'm not currently on any meds for fatigue but lots of caffeine helps me to stay awake in the afternoon otherwise I would be falling asleep at work.

Talk to your neurologist to see if you're having a relapse. I had an MRI done at the end of my sleep week but nothing showed up on it. Doc said that fatigue bouts don't always show up but he wanted to know immediately if I have another round like that.

Ask your doctor for help!

I've only been diagnosed with MS in June but I believed it all started almost 10 years ago when I was fatigued all the time and needed to sleep up to 12 hours per day and still could not get myself out of bed. PCP kept saying that it was because I was entering menopause. In retrospective something really bad must have happened in my body and I should have demanded more from the doctor.

Agree with everyone. See ur doc. Could be relapse or something unrelated to MS causing MS related fatigue.

Nuvigil (armodafonil) helps me but I have noticed increased fatigue when I’m in relapse and the need to increase nuvigil dose and drink lots of ☕️☕️☕️

I have fatigue as well, but Amantadine helps a lot. I make sure to eat enough protein and keep an eye on my vitamin D and B12 levels. Occasionally I’ll have periods where no matter what I do I have extreme fatigue. It typically lasts a couple of weeks. I’m retired on disability now and can rest when I want to, but when I was working it sure was tough. I hope you feel better soon.

Funny how finally getting all your ducks in a row as far as insurance and doctors doesn't make a dmn. Low to no energy is a huge topic and you know what, they still act like our overall situations are the same! I have yet to find a doc that has common sense or COMMON knowledge about MS. Energy or lack of is a real struggle for a lot of us. Stay on your doc about it maybe they are waiting to remember why they took that oath!!! It's a real PROBLEM that exercise and good thoughts hasn't fixed.

I had fatigue so bad, for years, that the only way I found to keep from going "comatose" was to stop eating!?! I found that if I ate anything, an egg, easy over, with nothing else, or just about anything else I tried, that shortly thereafter I would slide back into my fatigue / comatose state, which lasted all day, till the next morning, when I attempted to eat again, then repeat. So, I simply didn't eat all day till I was ready to slip back into "my coma", typically, I ate dinner, then fell apart, fell asleep. Life for a year and a half, made livable by fasting all day, every day? Then I found juicing. Fruits and veggies juiced did not cause me to go into a coma. So, for about the next 2 years I lived off juice, eating food only at dinner, when I would slip back into my coma. After the initial juicer about worn out, I tried vita mixing the same, getting some bulk in doing so. That worked too. Maybe it would have to start, maybe not? But, doing that for another year? I was able to carefully re-introduce real food (following the Whal's diet). A long road to anything close to normal. But I live by the "diet". Do I get fatigue? Yep, but nothing like my comatose days. Eating well is everything for me.

And the provigil & nuvigil, well they may have helped a bit to keep me from nodding off completely in morning rush hour traffic in Chicago. But honestly, they did little. I could always manage to keep at least one eye barely squinted open. I don't know how I made it without running into the car in front of me, day after day while I still worked. Went comatose after retiring? Then a long road back from the walking dead. But I'm back!!!

So can anyone tell me what I missed all those years?

That fatigue is so bad! It is what sent me to a Neurologist when DXED this last May; not the spaciticity; not the neuropathy, Fatigue! My first question was what could I take to make that go away? They said exercise. I was given Modafinil that they touted as an Energy pill (BS) but it does take away the "Cog Fog." The only thing that I have found that really works immediately for me is an IV infusion of methylprednisolone. But that's only for when I cannot take it any longer - it is my "MS eraser" but it always comes back. I think that daily exercise will help.

I can’t ever predict how long it will last. Sometimes just a couple of days and has lasted 2 weeks. Much worse when it’s hot

GLM,

I was diagnosed with MS in 1991. That's 27 long years ago. One of my first symptoms was fatigue. I think my fatigue has gotten progressively worse every year since '91. On August 20, 2018 I had 26 teeth extracted for health reasons. For the past 40 days my fatigue has really sucked! I have done absolutely nothing except play Solitaire on my computer until I doze off. Yes, I can fall asleep at my computer!! You should read my fatigue blog at scooterjon58.com. I have some stuff in there.

Hi GirlsLikeMe. I sure wish I could confidently with out a doubt answer this one for you. I just hope and pray it ends today. This ugly fatigue can be the worst. At least it's been the worst symptom for me on my journey with MS. I've learned the hard way how to better conserve my energy for my daily limited activities and to stop being so hard on myself. My fatigue level hasn't changed yet despite all the different meds, staying cool and daily exercises but I believe it's coming. So I hope it ends soon for you

Ali_B62 profile image
Ali_B62 in reply to Guava69

Exercise to some degree absolute must, even if it is very limited. Walk, if you can and as far as you can. If you can't walk, can you do seated exercises maybe? You have to keep that body moving somehow. :-)

I would say that the fatigue and the pain is my only symptom and I am tired of trying to tell everyone how tired i am and it seems nobody is really listening, i dont like sitting around and i dont like sleeping all day but that is exactly what i do UGHHH! I take the nuvigil i dont even know if that works but i take it, i take tramadol X6 a day and my neuro said to try and not take it see if that helps well NOOOOOOO i am in so much pain all day how can i stop taking that again UGHHHH! it is a vicious circle i wake up i take my daily pills cant wait because my legs hurt so much so i start to feel better get up and start to do something and here comes the fatigue about 2 hours after i wake up then i take a nap ugh here goes the cycle. I am tired of my boyfriend telling me i have to get up and do something, HOW THE HECK AM I SUPPOSED TO WHEN I CAN BARELY KEEP MY EYES OPEN!!! it is not that i am being lazy it is I AM TIRED! i told him last night it is because of the m.s. and he says " No i dont believe that" i just cringe when he does that! I went for my MRI the other day and the doc calls and says everything looks good, again i am sick of that damn MRI coming back looking fine no change, I want someone to tell me you are sick it is not you you are not lazy! I have been dealing with cancer for the last 2 years finally had a bilateraly mastectomy on 7/11/18 then 6 weeks later i fell down the stairs and broke my foot, ok well the xray showed it wasnt broke but i know it was it still hurts like hell and it is still bruised that was about 7 weeks ago, and durring the cancer i was attacked and the guy broke my nose in 3 places and my cheek and i had severe eye trauma yes the ct scan showed the breaks LOL, so it was cancer attack cancer then fall down stairs so my last 3 years have been a roller coaster. But i know me and i know I am tired before the first cancer i was swimming every day walking on the treadmil everyday now all i do is sit in my recliner i just now tried to get back on the treadmill a little so that is nice but i cant go to the pool the doc says it is not a good idea that pools are too dirty right now to wait a while. But i tell you what i am tired of my boyfriend telling me "i dont believe it is the m.s. that really pisses me off, I love my neuro he is the best but i wish he would just give me a go go pill LOL right. Everyone just says you need your time to heal well i am done i want it now. Just make a pill that helps us with the fatigue please

Ali_B62 profile image
Ali_B62 in reply to

If docs don't think it's MS, what do they think it is? Do they have any idea?

Guava69 profile image
Guava69 in reply to

Good morning I am 100 percent in for the go go pill. That's funny hearing you refer to it like that because that's exactly what I say to myself when I feel good in the morning. I feel like I have to get going because my body is going to shut it down quickly. Also I used to beat myself up so much because I felt bad having to rest so much throughout the day to just get through the day. I'm finally learning to let it go because I know I was quite active before MS and I'll constantly strive for improvement but I can only control me. I have no control over what others are thinking about me. Plus that's too much energy and that's a precious commodity I can't squander away. Take care of you ☺️

in reply to Guava69

I know I just want to feel like I felt before and it seems like it's getting worse. nobody knows how bad we just want to get back to a somewhat normal

Hi GirlsLikeMe, I'm 10 years in with RR and going through the same right now? I wonder if it's seasonal, (of course I'm no Dr my new friend) but rainy in my PA area; that will do be in!!!! Gotta have that "sun" maybe run it pass your doctor too. I have tired monitoring triggers when this happens also like if I'm binge watching too much late night Lifetime movies (cuz we don't sleep well) food etc. Get rest when you can, and take good care of you.

NeeC

Ocrevus is supposed to give energy. I got on it two months ago and just signed up for yoga after work. My fatigue has been so bad, before Ocrevus I wouldn't even consider going anywhere other than home after work. Not sure it will work out, but willing to try.

Also, closing your eyes for 5 minutes at least every two hours helps tremendously. Use a timer. You can just do it sitting down.

GIRLS LIKE ME, You're not alone! I had a urinary tract infection a tear ago that brought my fatigue to a whole new level. My Modafinil used to manage to get me through my workday and not much more. Now I can't even imagine working at all! I was a letter carrier and walked nearly a half marathon daily now I do any kind of activity such as scrubbing my shower or weeding my garden for a half hour and I need to immediately sleep for about three hours! And What is with getting up after that three hour nap and feeling just as fatigued?! That's one of the things that gets to me, it's hard to plan doing anything in the afternoons or evenings as I can never be sure I'll be even remotely interested in the effort and energy it will take me to go anywhere or do anything! It does make me feel better to know that others feel like me. Not that I feel good about ANY of us feeling this way! I tend to call myself lazy often even when I know I'm being unfair to myself.Maybe I'm just saying it because it is my fear that that is what everyone is thinking about me. It's so horrible how much we struggle daily and yet still berate ourselves for not doing more!

carolek572 profile image
carolek572CommunityAmbassador

Hello GirlsLikeMe,

The fatigue is the absolute worse. I plan my day with 'todo' lists, and that list is sometimes exactly the same all week long! Oh well, nothing got done. Sometimes, I misplace my 'todo' list and eureka, I hit the lottery in that I have nothing to do! :-D Point is, plan to do, and sometimes, not so much. Guess what? Tomorrow is another day. :-D You probably do much more than you realize!

Keep Smiling and Stay Strong,

Carole :-D

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