It's a real thing people! You know it! I know! Our beds, couches, chairs and floors know it! It is what it is... I think one of the hardest things for others to understand is that.. We Can't Help It!!
MSAA says " MS Fatigue
Fatigue has been described as an “overwhelming sense of tiredness.” Up to 80 percent of people with MS experience the disabling effects of fatigue. This overwhelming tiredness could occur any time in the course of MS, and it has not been shown to be related to measures of disability like the EDSS (Extended Disability Status Scale). Many people with MS find that fatigue increases as the day goes on, and worsens with a rise in body temperature, which might be caused by hot and humid weather."
They have a ton more to say... Check out the website for ideas on Conserving and Energy Saving Ideas!! mymsaa.org/ms-information/s...
~How do you explain it?~
~What do you do for it~
J🌠
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Jesmcd2
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My explanation today would be much different than a few years ago 😔 I don't have the energy to be explaining 🤣 It’s like working a 16hr shift on no sleep while having the flu and bricks tied to your feet? Bonus fatigue is when you start getting shocked, which does increase alertness and effective verbalizations temporarily, but it usually a warning sign.
I have a lot of tricks, products, and such for fatigue, but none of them can outsmart sleep deprivation....and I’ve set a lot of money on fire trying 🤦♀️
It is hard with kids waking you, and falling back to sleep is the issue for me. Sometimes I’m awake for 1-2hrs afterwards 😱 and then someone is up by 530am 😭🤮🤦♀️ I’ve tried some melatonin over the past week and I think it has helped with that. I have a routine I rarely stray from, and it’s the basics of sleeping at the same time, cool dark room, noise machine, blue blockers, ear plugs, etc...nothing special. I will take an antihistamine sometimes if it’s been a few days of poor sleep or feeling tired. Sometimes I just need more sleep with whatever MS is up to. I have a sleep tracker and have enjoyed getting some feedback from that! Last night I was fasting with my buddy, took the melatonin though, and I got 45min more deep sleep than in the past week, despite V waking is up at 2am 🙌 🎉🎉Could be a fluke, could be life changing info 🤷♀️🤔
What’s your routine look like and what remedies are you using now?
I can't imagine how hard it must be for you to have kids and MS!
If my experience could help you at all, I would be thrilled.
So I had exacerbated sleep issues when I had my mercury poisoning. I know that the Chinese medicine links insomnia to dehydration/not drinking enough during the day, but I am sure this is not the case with you, and you daily drink 2 liters of water.
My Integrative Medicine PCP ordered 1-5g melatonin. Here is the thing I have discovered with melatonin. So I take 1g melatonin, magnesium glycinate and
phosphatidylserine 100mg 1 hour before bed. 1g melatonin only last so long. I always get up to go to the bathroom 3 times a night. So when I get up the first time, I take 2g melatonin more. The second time - another 2g. And the third time - 1g. If I can't fall asleep right away, I meditate for a few minutes. So in total I take melatonin 6g a day/night. Taking 10 or more grams has never helped me.
If you follow the sleeping basics, I am sure you also use a sleep mask and diffuser (you didn't mention them, just want to be sure).
I have discovered the beauty of hops tea. It was in one of the health videos. My naturopath said it tasted like beer and advised against it for that reason. I got used to the taste and drink it 2-3 hors before bed.
The cognitive issues, when they happen, make everything feel impossible. It shows on my face and V has been upset by that several times 😔 Thank you so much!! I had tried 10mg before but it didn’t seem to help every time, but I also had forgotten that it’s normally sent in pulses when the body makes it 🤔 I have one that’s a mouth spray and break up the amount also. I never thought a diffuser helped much, but I should find a sleep mask I like!
Oh, fun! Where did you get it? I used an additional dose last night after my 3am bathroom trip and was able to sleep until 7am! Hubs was on morning kid duty 🙌
For me it feels like I took a heavy sedative and was woken up after only an hour. However, I started intermittent fasting just after Christmas and it is better, not completely gone but better. I had to give up my cream and Splenda in my coffee to do it. I don't normally eat until lunch anyway.
this hits the nail on the head,i have learned not to fight it and i will feel better when i wake up,no matter what plans i have,the fatique still seems to be the ruler.you do seem to have to have a plan for the day.
The real curse for me was that "as soon as you sit down (or more like fall down), you WISHED you were asleep. Too tired to move, but then too much pain to sleep.My fatigue is much better these days. Still heat/humidity sensitive. But, with energy management, diet change, and help from cannabis, I no longer get those day after day feeling like a soaking wet rag days. Major diet changes religiously the #1 help. CBD for the pain so when it is time to sleep, I can. And a bit of an energizing strain sativa for the really big jobs, like cutting the grass, or shoveling the snow. Life's good again. Let's see, that was how many keystrokes? Energy management, everything counts. Oh no, I could really use a drink of water. That's down in the kitchen.....I'm not THAT thirsty? I remember all too well.
Thank you for posting this. I wish some people I know would see this. I am getting so tired of certain people telling me to take a nap. Again thank you. Prayers and God's blessings to you
I usually explain it by texting a person that very same thing. I also have insomnia so i add that in at the bottom of the text. Trying to explain verbally is too exhausting.
And i go with scripts for help with all of it. One to wake me up and one to put me to sleep. Sleep really is a beautiful thing
The more I've learned about MS fatigue, to explain it is realively easy for me to explain it to fellow New Mexicans. The joke here is, if the orange road construction barrels were ever moved, New Mexicans wouldn't be able to find our way home. But that is what MS fatigue is like: drive down the highway, traffic moving smoothly, speeds maybe even a little high, and suddenly . . . . screech to a stop because lanes closed due to construction. That control our brains need to send to our legs or arms run into a sign that reads DETOUR AHEAD. And after sitting in traffic for an hour or more, now start following that detour that goes on and on and on and on. You wind up in another town all together, Though you're tired, keep following that detour because FINALLY! You've gotten around the construction and you can continue on to your destination. But you're too sleepy to keep driving, so you have to pull off at a motel, and try again tomorrow.
My wife takes concerta 36mg first thing in the AM and it helps a lot. It’s expensive and you have to take the brand, not the generics. You can read about the generics on goodrx. It’s a attention deficit disorder drug buts it’s also prescribed for fatigue .if it is to expensive ask your insurance company to move it to a lower tier, if they say no file an online complaint with the insurance commissioner of your state, very easy to do and you w I’ll probably get good results.
My fix for that 4 pm nap is a little unconventional but works for me for about 3 hrs.I have prescribed immediate release Ritilian and take 2 of those a Vivian and a energy drink.
I need to take it about 2:30-3:00 for them to take effect before I get to tiered. If I wait to long it doesn't work and I still end up taking a nap.
I've been seeing a commercial for a sleep apnea that this new medication provides up to 9 hours of energy. I believe it is called Sunosi. I have a numerology appointment next week and I'm going to ask her about it
My neurologist did write me a script for this and needed a pre Auth for it to be filled. She thinks it could be a game changer for MS daytime fatigue. She is willing to even work with the manufacturer to start a trial for MS patients. I'll keep you updated.
I have been approved by the manufacturer for a discounted payment card and am going to try to get it filled out of pocket depending on cost.
If I can get it filled and the results are good my neurologist is going to try to make the manufacturer approve it for MS patients to get it approved by insurance.
Feeling guilty that i've wasted the day away sleeping & get up at dinner & within two hours of being awake i want to go back to sleep never feels like i've slept at all keep thinking is this all my life going to be like nothing is going to be normal anymore constantly beat myself up about it
Hi Di01 It's rough, when all your body wants to do is sleep, and believe me I know that feeling of sleeping your life away! There is no reason to feel guilty about tho! 🤗 Talk to your neurologist about it! Tell them you need something to help you through the day. In the meantime keep a journal of your sleep patterns so you can show them! 🤗💕🌠
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