Hi Friends-Do any of you feel like sharing if you have intense daily MS fatigue? When does your fatigue start everyday? I’ve had RRMS for 7 years now and it always starts up daily about 2.5-3 hours after I wake up or if I overdo it with several things in AM then my battery charge goes to 0 for rest of day. I usually get more needling, sore, tingling intense nerve pain all over and sometimes burning pain. This is when I feel weaker in my legs and my legs feel much heavier walking around with cane or I use my scooter if I feel too weak. I have mental and physical fatigue that starts at same time and it lasts rest of day. It’s VERY frustrating and can be depressing at times for a bit. And I’m a positive person and very hopeful, but I’m only human too.
Thanks for listening and love to hear from you-
Nikki 🌸
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nicoly3467
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I get that feeling in spits and spurts, Nikki. And it can last for days, weeks, or longer. When I can, I do as much as I can, but it is a delicate balancing act because I certainly don't want to over do it. I wish that I were there to help you but I am afraid that we would both be there staring at the ceiling and wondering where the day, week, or month went. Keep Smiling
I feel alot of fatigue around 3pm on. If i take a little break then I can get more energy again. Also if I just do too much in one day. I usually need a break around 12 also.
Good to hear your voice again on the forum, though I am sorry it's a lament. I can't answer your question but I hope you find help from others here and feel so much better that you can share more of your beautiful bird photos.
so sorry the fatigue has slapped you in the face,it really does let you know who is boss in this ms relationship,but you can get it back.I have found you really have to listen to your body,as much as you want to push through it and finish whatever will get you a quick nap!i am listening to my body and taking lots of breaks,not the worse thing to have a disease that makes you sit down!when I get really down ,and you do,giving up your old way of life,i think of the blessings around me,people who want to help you,people that hold doors,and kind words.and i give thanks for a great chair to sit in
Hi Nikki! I know what you are feeling! Sometimes I can make it until noon, sometimes I crash even earlier. Modafinil helps a lot, and it is the only thing I have tried that will help! I take 1 tablet when I get up and if I need to keep going all day or have an after appointment or plans I take another with my lunch. If not, I take a nap!
A nap will do wonders, make you feel rested and refreshed, ready to go again. I am so sorry that you are having to deal with this and I pray that you can find a way of coping that works for you. Try not to overdo it, take breaks, don't get stressed and drink lots of liquids. Linda
My wife takes concerta first thing in the morning. It really spikes up her energy level which pretty much last all day. She takes brand but there is a generic.
On a normal day my battery dies at 2 o'clock sharp. Im a human time clock at that time. "Oh... let me guess....its 2." If I do too much in the morning then I might as well go back to bed. Its not always easy to just stop life and take a nap no matter how much I know it will help. I was diagnosed in 2015 after a really bad day where I was rushed to ER believing I had a stroke. I went downhill from that day. I was soon after diagnosed with trigeminal neuralgia and narcolepsy as a cherry on top. I recently had surgery for my trigeminal neuralgia and I had a good 2 months without as much pain but its slowly coming back. It's not a 12/10 but more like a 6-7/10 so I will still take it. So I know what you mean. Good luck recharging your battery.
Oh my gosh. You described me to a tee. I've been having a hard time putting it into words to my meuro and family but this is it exactly. Thank you so much.
My fatigue starts every day in the early afternoon . This can be greatly effected by the heat and or humidity. I go from being able to get around with a walker to having to just sit down. I have ppms but our symptoms sound about the same. Bottom line, if it not done by noon it's not going to get done. Yes, very frustrating!
Do LESS, plan your day to end in the afternoon not later at night. Adjust and adap your day, priorities wjat must be done and what you might like to do. MAaybe a foolish bath at lunchtime will calm your body down and allow you to do smaller things. Adjust and adapt.
I have fought fatigue for years. I have had RRMS for over 50 years. I have taken every supplement, every tea, exercise, etc., etc., trying to keep going, overcoming the pain, being a mom, wife, doing a lot of volunteer job, then working full time, then my husband retired and we traveled and backpacked (pain!), I kept pushing until I collapsed. One doctor after some testing said I had adrenal fatigue because I had pushed so had, going on adrenal. Well, now I am 74. For 2 years now, I have stopped pushing and giving in to the fatigue and pain. I stay in bed 18 hours a day. Sometimes staring at the ceiling while listening to Audible books, sometimes plain brain games on iPad, sometimes reading social media until my left eye with optic neuritis gets to blurry or right arm stops having muscle spasms and can't type anymore. I gave up. Yes, overwhelming fatigue and nerve and muscle pain if I try to do anything. Charlie horse in my legs just lying in bed. I have vented here before, but Im just letting you know you are not alone - it is normal for MS. Just be thankful you can still take care of yourself. Thats what I do. Gratitude. Thankfulness. As I sit here with my right hip aching badly I am thankful I am not in a nursing home like my dear cousin Susan who spent the last 10 years of her life because of the severe MS in her spine making her immobile, a gradual decline until death. We are blessed we are still mobile, in spite of our severe fatigue and pain. As for new appointments as someone asked, I am going next week to a pulmonologist due to a CT scan revealing severe scarring in both lungs due to yearly pneumonia. And gotta make appts for annual mammogram due to cyst and mother dying of breast cancer, both grandmothers dying of cancer, brother has prostrate cancer, gotta make appt for annual cervical cancer scan or whatever due to whatever else I have (forgot the name of what I have). But, we are blessed. We are in our own homes. Free to do what we are able to do. Could be so very much worse. Its ok that I only have 6 hours a day. I enjoyed life when I could. "In acceptance lieth peace." "I have learned in whatsoever state I find myself therein to be content."
Thank you so much for sharing your story. I am so sorry your fatigue is so severe that you have to lie in bed most of the day. That sucks big time and I’ve been there for my first two years after being diagnosed 7 years ago. My son had just turned 8 years old then and it was extremely hard taking care of him, taking or picking him up from school and helping him with his HW, then he wanted to play outside with me and I just fizzled out. My hubby has been a huge support for me and our son so that’s a blessing in itself. And I agree, the fact that we can still take care of ourselves is a huge blessing. I couldn’t do it all back then and had to learn how to pace myself slowly, without the guilt of not being able to do this as a Mom or that with my family or friends. I am still mobile thank God and walk with a cane. I’ve had some severe relapses in the past that paralyzed my legs and affected mildly my speech and thinking processes and those took a while to partially recover from not fully. I quit my job right before I got my diagnosis since my job entailed traveling to families’ homes and working and playing with kids all day for an Autism center. My fatigue was so severe then and the nerve pain and numbness all over was horrible. My legs felt like gourds too walking around and still do, but they feel better now than at that time with no treatment or any meds.
i am so sorry it hits you so hard ....start slow ...i just go with what is going on and keep it at a good pace and will slow if need to but try to not to overdo it ...but again how do you stop sometimes when i really want to get it done...oh well there it goes again...ahhahah....we do what we can with what we have ....love with all the kindness to yourself ....keep on keeping on....ahahahah....you have to do what your body allows you to do i guess...who knows..
Thank you everyone who replied to this post and shared their story. I really appreciate it. I have been out of the loop here for a while so reading through posts now.
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