Would love to here about what you do about being so tired. I have no energy to do anything. And will sleep for 3 days sometimes. My boyfriend doesn't understand. And lm getting tired of it.
Being so tired: Would love to here about... - My MSAA Community
Being so tired
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I am the same way! You just have to rest all you can. My bf has a hard time understanding also. "We just got up how can u be tired!" No matter how much rest we get we are still tired. It sucks but don't push yourself too much.
There are days when l just don't even bother to get up. I know when lm beat ugh l just roll over and sleep. What worries me is that when l do sleep for so long, l seem to wake up with symptoms, optic neuritis, numbness or my favorite my leg shaking.
I have had days like that! No energy at all or I try to get up and shower and I'm worn out from a shower! That doesn't sound like fun at all! My legs always give me trouble at night I hate it!
My left leg started to jerk really bad. That is what started me on my journey with MS. That summer my dog wouldn't even sleep by my feet. He moved to the head of the bed. Now that's his spot. Lol
Hi, Froggiechick. I assume your neurologist has you on Vitamin D? Have your B-12 levels been checked? I just switched to a new doctor who is taking a much more aggressive approach to my care. He ran lots of labs and discovered by B-12 is extremely low. I apparently have yet a 3rd autoimmune disease that attacks the lining of my stomach that prevents the production of intrinsic factor, which is a substance secreted by the stomach that enables the body to absorb vitamin B12. I started taking dissolvable B-12 under my tongue every day and I've boosted my protein by eating more red meat and dairy. It really has made a difference for me.
I have been having issues with vitamin b12 and vitamin D I've been doing shots and pills and my levels went up and now they are back down again. I have really bad stomach issues to begin with so I wonder if I have something going on as well. I feel like everything is being put off because dr won't start treatment until I get the stimulator removed from my back. Fighting with workman comp now. Hopefully once all this is solved my dr will step up and help me out.
Oh, no! I'm sorry you're having to fight with workers comp. I'm an insurance agent and I was also a recipient of workers comp benefits many, many years ago so I've been on both sides of the fence. I have a good friend who has been fighting workers comp for 5 years now. She broke her ankle on the job and as a result now has CRPS. The poor thing lives in a nightmare. I wish you the best of luck.
Thank you I sure need it! It's been a long stressful process all from a fall at work! 
I talk with my mom on the phone every couple of days. She now says to me -"Other than being tired, how are you?" I spent a few days with her this summer and she seemed baffled that I was tired- "You didn't do anything, how can you be so tired?".
My husband thankfully doesn't do that to me! Of course he goes with me to the doc a lot so he knows chronic fatigue is a symptom.
I think unless you're living with it, no one can imagine the utter exhaustion that a person with chronic fatigue lives with- mental and physical. Good Luck! I hope you're not relapsing.
So far so good without relapsing. I had a round steroids in Jun then again in July ugh.. enough is enough already lol
Hi Juleigh21 ! I am so late but I'm pretty new to this community and was just browsing around the posts and came across this one. I am so tired all of the time and don't know why. I can fall asleep at anytime and anywhere and it seems to be getting worse. I did not know but it sounds from all of these posts as though it can be related to my MS. I told my neurologist about this and I think that I'm due for a sleep study or something but I don't know what that will uncover. I wake up in the morning some days and feel like I haven't slept an ounce while other days I wake up feeling rested. I feel like I'm just all over the place right now physically. I'm beyond exhausted right now but I'm at work until 5 then I have to pick up my daughter then my second job (single parent) begins lol.
Last year I fell asleep at work a few times. Healthy people don't understand that we can't just work through it like they can. I was forced to resign my position this past November. All 3 of my docs stated fatigue as on of the reasons I can't work on my disability paperwork. Chronic Fatigue is definitely a symptom of MS! There are meds that can help with it though. Good Luck Taylorsmom! Keep fighting the fight.
Fatigue is the worst symptom of everything I'm struggling with. I have many other symptoms, but fatigue is debitating.
I truly feel for you in your suffeting.
Tanya
I can tell you that physical exercise along with taking the drug provigal helps me a lot. I suggest talking to neurologist and other doctors to make sure there're no other causes of your fatigue. Unfortunately, even working out, taking Meds and getting plenty sleep, I'm still tired some days. That's the beast of the disease called MS. Good luck
No question that l get plenty of sleep. Just feel like l sleeping my summer away. When all this started last summer l know l slept a lot more. It was like my body shut down and said something is seriously wrong. 3 Dr's later l had an answer. From the sound of some of stories lm one of lucky ones. I was caught pretty fast, and have only had 2 relapses. When l see my neorolgost again l will ask about the provigal
Thank you
I know what you mean about feeling tired. I'm up almost every hour on the hour either because of hurting, going to the bathroom or I experience seizure like episodes. I have a 20 year old son with asperger's and a 16 year old daughter with bipolar so they wear me out. I have to get up early with them, get them both ready for school or sometimes work for my son, so I still manage to keep a loose schedule. I try to walk/run 4 to 5 days a week, but after that I am pretty much out for the afternoon until I pick the kids up. I just keep pushing along. I know for a lot of people that experience feeling exhausted can be overwhelming and depressing, but I feel everyone on this post has to do what is right for there body. Don't let others make you feel bad because of it.😊
Bless your heart you have your hands full! I think we all do what we can when we can. This monster they call MS has its good days and it's bad. And it's out of our control. There is no reason to feel bad. Just fustrated sometimes.
I know jesmcd2. I know it's frustrating. My sister also has ms and they haven't found meds that work for her. She says she has to leave work sometimes because she hits a wall and can't stay awake. I think we can only do what we are capable of doing and when you're tired, you have to listen to your body.😊
A study was done with people with MS and they benefited from taking 400 mg B-1 daily. Try it! Also, consider the other Bs. Get the bloodwork for Bs, C, Magnesium, calcium, vitamin D. Make sure you are taking enough D.
Are you eating a non-inflammatory diet? This will also help.
I do take vit D iu and sit in the sun as much as l can without getting over heated. Oh how l love my neck coolers lol. Alot of vitamins l cant take because they upset my stomach, my body just rejects them. Tons of fruit and salad and yogurt in my diet tho.
That's a good point. We all that have MS should have a complete blood work up. Good percentage of us have low VD levels and supplements will help. We just don't get enough sun for its VD.
Jefactdcd2
Hi, it's Fancy1959. When I was first diagnosed a girlfriend of mine who is a physical therapist set me down and had a talk with me. She had great ideas and I still use them frequently. One of her main thing was to conserve energy every place I could. She encouraged me to get the dreaded handicap parking permit. She said to use it even on good days and not be ashamed of taking advantage of parking close stores. She also encouraged me never just to roll over and play dead and let MS walk all over me. She told me to always get up and do something no matter how small it was.. It was all part of her ways to conserve what limited supply of energy I had. Realize that many people with MS deal with the same lack of endurance that you have. You are not alone and make sure you tell that to your family and friends. Just explain that your needs have changed and they will soon learn to accept that fact. It was especially hard for my family since before the MS hit I was a Non-Stop type person who was always involved in something or on the go. it is sometimes very hard for your loved ones to accept the fact that their mother/father, their daughter /son, their girlfriend/ boyfriend has a new reality to his or her life when MS strikes. Encourage them to read up on the disease because information is not only your friend but their friend too. Be strong and never give up. When it knocks you down stand back up. Together we are stronger.
it's fancy 1959 again. One other thing I forgot to mention is that when I leave my home I make sure it's a pretty good day to walk out first. Then I have gotten where I only shop at the stores that I know that have the motorized wheelchair / shopping carts. It makes a big difference in width technology I can go out and shop independently and feel good about it and finish without overtaxing myself. We put a nice bench in our handicap shower so when I shower/wash my hair/shave I do not over tax myself. This helps tremendously. It allows me to finish this tedious process all by myself even on bad days. And he keeps me safe while I do it. If I think of other energy saving techniques I use I will be sure and let you know. if anyone else has energy-saving / safety techniques they use frequently I would love to hear them too. Please share. Together we are stronger!
These are brilliant ideas! I also have the dreaded handicap permit and on some days it is a God send. My bf put up a bar in the shower for me because of the vertigo. There are days when getting up is most difficult but l do have a black lab that has to be let out through out the day. Gotta love responsibility ' s. I am to the point of looking into the shower chair tho.
Have you spoken to your neurologist about Amantadine? That's what mine gave me for the fatigue.
I did speak to him after doing some research on the subject. We decided that provigal would help. Been on it a cpl of wks now and seems to be working. 
I deal with chronic fatigue. My doctor prescribed ritalyn. It helps. But I think it is a masking of the fatigue. I've heard others say the same.
I also spend time/energy monitoring my energy levels and when it is time to stop, I stop.
For me, this has been tough.
David
Hi DavidinKnoxville my Dr put me on provigal, and it seems to be working. I do monitor my energy levels tho. There are still some days lm lethargic so l do the bare minimum. But at least lm not sleeping.
I have found that using a sublingual Vitamin BComplex drop gives me a definite pick up. In fact, I use a B Complex caplet, a B 12 tablet and D3 capsules every day. My energy level is great!
Hi sdgriffin763 l had a blood work up done this past week, so waiting on the results on that. I also take Vit Diu 4000mg. Of course the waiting part is the hard part.
In the mean time my Dr put me on provigal, and it seems to be working great. I'm so glad that your vitamin B is working Great for you
My doctor put me on Ridalin and it helped with the fatigue greatly. The only problem was that it made my blood pressure go to high, so I had to stop. He then tried Modafinil (brand name Provigil) and it has truly stopped the every morning fatigue that I was having. I now wake up feeling normal. I still get fatigue when in the heat or working to hard, sometimes for no reason at all but, not the morning fatigue that I had for years. It does not seem to effect my blood pressure either.
Hi Morllyn when l 1st started chatting on here l had no idea that there was something you could take. Ugh. But with advice from ppl here , talking to my MS support group and my Dr he gave me the Modafinil. Took about 2 wks to kick in and yeah there are some days when l just can't do anything. But lm not sleeping my life away. Which is truly amazing to me
I know what you mean, I slept until 9 or 10 each morning then could not get up the energy to do anything until afternoon. Now I can get up and start my day without feeling useless.
One thing to remember, MS tired is NOT the same as tired for a regular person. This type of fatigue is specific to MS. Often referred to as lassitude. Just getting rest doesn't fix it. If you smoke, quit!! Right now! Make sure your diet is as healthy as it can be. You do need exercise. Swimming and yoga are often the best for people with MS. As others have mentioned, Vitamins D & B-12 can help. Last but not least, medications can assist a lot. Good Luck!
Hi there. I take 30mg. of dextroamphetamine in the morning - as soon as I wake up, or get my first cup of coffee. It's the only thing that keeps me awake and "normal". If I don't take it, I can easily sleep the day away, every day. If I'm having an especially grueling day, I can take an extra 10mg pill in the middle of the day.
Hi Sara2000 when l was talking to my Dr about this l asked him about ridlen or something like that. Lol he told me nope, that l forget stuff anyway.. ugh lol So he put me on provigal and it's working great for me now. Keeping my fingers crossed. Although there are still days where l just feel like l cant. So l take it easy those days. I'm so glad you found something that works for you.
Well, Provigil is better than nothing. I took Provigil for a couple of years, then it stopped working for me.
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