Multiple Sclerosis Fatigue - New Research
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- čas přidán 24. 07. 2024
- There is new research on multiple sclerosis (MS) fatigue and what we can do to reduce it. MS fatigue affects almost every person with MS and it is one of the most troubling MS symptoms. In this video I share what the new research shows and tips on how to reduce MS fatigue.
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*The Studies/Papers*
Correlation of fatigue with disability and accelerometer-measured daily physical activity in patients with relapsing-remitting MS www.msard-journal.com/article...
Fatigue Severity Scale- FSS www.sralab.org/sites/default/...
Modified Fatigue Impact Scale- MSIF www.sralab.org/sites/default/...
Expanded Disability Status Scale - EDSS mstrust.org.uk/a-z/expanded-d...
MS Functional Composite - MSFC
nms2cdn.azureedge.net/cmssite...
Dietary Patterns and Their Associations with Symptom Levels Among People with Multiple Sclerosis: A Real-World Digital Study
link.springer.com/article/10....
HOLISM Study
overcomingms.org/for-professi...
Low-fat, plant-based diet in multiple sclerosis: A randomized controlled trial
pubmed.ncbi.nlm.nih.gov/27645...
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The information on this channel is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. It is for educational purposes only. Always consult your doctor for professional medical advice.
#MS #MultipleSclerosis #LivingWithMS #EvenSoItIsWell, #VickieHadge
00:00 Introduction
00:21 New MS Fatigue Research
01:05 Primary and Secondary MS Fatigue
02:20 Two MS Fatigue Assessments: FSS & MFIS
02:39 Two Measures of MS Disability: EDSS & MSFC
04:05 Correlation between MS fatigue and disability
05:06 MS PT Resource Recommendations
05:33 Daily Activity and MS Fatigue
06:19 Physical Condition and MS Fatigue
07:47 Additional MS Fatigue Tips
Do you have tips to share that help with fatigue?
One thing I tried recently was to play a little bit on my ukulele when I was feeling tired, rather than take a nap or a walk. It awakens the brain and I think the vibrations of music are helpful to stimulate the brain and body.
@@MsTubbytube I love this! Music can be so invigorating and stimulate our brains. Thanks for sharing.
Capsules of Lions Mane (mushroom) extract provided big relief from fatigue for me - a big step up in energy 🙂
I started taking it after reading about it, and I’ve made a note to edit this comment with the link if I can find it, and the brand, in case it helps anyone 👍
Update:
The company was Focus, the capsules (vegan & gluten free) were 1,000mg per serving. There are other suppliers, but I can vouch for this one!!
So far I have not found the reference about Lion’s Mane & MS. The particular thing I remember, though, was that the MS patients in the study actually increased the distance they could walk in a given time, i.e. they improved in a measurable way & not only by self assessment.
I’ll stop looking now (energy management!!) but if it turns up, I’ll add the link 👍🙂
@@grinch4567 excellent! I use lion’s mane powder in my smoothie and add it to my coffees sometimes too! I also found a local provider of fresh lion’s mane so eat it that way too!
👍
I just reached a new high of 34 mins walking outside with my cane! This has been a struggle for me since being diagnosed. I also am doing some exercises again every day. I was a certified womens health instructor, and enjoyed walking and hiking for hours a day, before MS, so this is huge for me. I still struggle with fatigue every day, but I turn off the phone, put out a do not disturb sign, and sleep an hour or two every afternoon.
I love this! Good on you for keeping up with the walking and making improvements. Oh yes, naps are wonderful things. Great suggestion.
I never realized what my neurologist meant by fatigue regarding my RRMS, so I just kept telling him that I have never experienced it but now that I think about it, I've definitely experienced it. I casually go on long walks and hikes with my friends. I would always be the last person of my small friend group and thankfully they always make sure that I'm alright. I just thought I needed to strengthen my legs through exercise but even so, my legs would give out around the 2 mile mark every time and I would just limp my way back lol
edit: I will still walk with my friends though. They invited me to do a 6.2 mile bike ride and I couldn't do it but they cheered me on graciously!
Good on you for persevering through the fatigue and how awesome is it that you have supportive and gracious friends. Such a gift!
Thanks for the info!
I walk as much as I can and do stretches every other day. I do much better on fatigue when I exercise. When fatigue hits me, I rest until it passes which can be a day or two.
Thanks again for sharing all this wonderful information.
Sounds like you have a good thing going with managing your fatigue. Thanks for watching!
SO interesting! Thank you for sharing this information 🫶🏻
Hi honey! My pleasure!
Thank you for confirming what I experienced firsthand. I have always felt better after exercising.
Thanks for watching. Me too! I feel better after I exercise!
One of the best tips I was given early on was, “When building capacity, avoid ‘Boom & bust’ - it’s difficult to achieve, but the payoff makes it worth it” 🙂
I still find it difficult, but persevere: I’m further on than I was 😎
Thanks for watching. Can you say more about what “Boom & bust” is? Is that giving all our energy and then feeling depleted?
@@EvenSoItIsWell
At the hospital where I receive MS care, a psychologist took me through their Fatigue Management course. He explained that - understandably - some patients are inclined to rest too much when fatigued. This leads to deconditioning.
He then said that the other group of patients is patients who, when feeling relatively good, “Boom” ie tend to do too much because they feel they have the energy & want to make the most of it. Over time, this also leads to deconditioning. I’m in the latter group.
Somewhere in the middle, is the path of doing enough to increase capacity, but not enough to “crash” (or “bust”) as they call it.
To my mind that fits in well with the research you presented about more activity correlating with lower fatigue 🙂but how does all that seem?
Addendum:
The “Boom and Bust” sets up a pattern of peaks & troughs” which, over time, is fatiguing & leads to deconditioning. Evening things out, building in times of rest to allow recovery after exertion, has gradually brought me away from there. Now I’m on much more of an even keel 🙂
Thanks for that @@grinch4567
@@EvenSoItIsWell
🙂
Having a few different types of activity each day. Tai Chi is good and gentle, can be done sitting. Crafting when tired, knit a baby hat for example. I have a long stretch exercise band which I only use for a couple of minutes per day. Any time moving is good.
I love all of these! It has been a long time since I have done Tai Chi. I need to add it back into my rotation. Thanks!
I cannot sleep
Hi Brenda. So sorry you can’t sleep. Check out my video on sleep for some tips that may help
czcams.com/video/Dzc3C5YrryY/video.html
Hi there how r u😊 i have ms snce 2 years. Im not on dmts and unfortunately im in a wheelchair but its not from ms. Its from chronic disabling vertigo i got last year. Im a covid long hauler and recently had covid too. 2 rounds of steroids last year and 7 antibiotic courses. I collapsed my immunity and dizziness r so bad im bedridden. I cant stand or sit up without feeling like fainting. No one can find a reason for my vertigo. The neuro gave me amantidine for dizziness but im hesitant to take it. I do have spinal issues tmj and a severe vestibular prob no one can figure out. Im against antidepressants.
Hi Lara Rose. Thanks for watching. I am so sorry you are going through all this. I encourage you to give the amantidine a try. It may help. And definitely keep advocating for yourself and asking for second opinions or referrals until you find some source for your symptoms or relief from them.
Tell me, how do you take this exercise when your whole body is screaming in pain. Don't get me wrong. I'll push myself. I still do some exercising. I am not a baby. I have been suffering pain in the central nervous system for over thirty years from MS. The advice given is for everybody Not something special for ms patients to follow. But it would give you your best chance the same as everybody else
Oh no. Exercising effectively with screaming pain is not possible. Managing the pain first would be a priority. I am not a doctor so I can’t give medical advice but maybe working with a pain specialist? Or trying different medications or THC? Maybe stretching or physical therapy with a therapist that specializes in MS?
Fatigue is awful.. I am fatigued always.. sitting up I cant keep my eyes open..is this normal?
Extreme fatigue is not normal. Definitely work with your doctor and try to take exquisite care of yourself. With chronic illness we are definitely more susceptible to fatigue. Eat the most healthy foods possible, exercise as you are able, try t get good sleep, and practice mindfulness. All of these will help.
seriously I was ok but now with my wisdom tooth pain my septum grows up and I'm afraid to go to dentist 😢 what your advice to me please 💔
Oh goodness. I am sorry you are having wisdom tooth pain. Have you been diagnosed with MS? If yes ask the dentist if it could be trigeminal nerve pain.
@@EvenSoItIsWell
yes I have ms but when I ask him he told me you need to take off the tooth but I'm so afraid to do that
@@joly.m2050 try not to be scared. I had two of mine removed and it wasn’t too bad.
@@EvenSoItIsWell thanks alot for your advice 🙏💗