Spoon Theory: Making Sense of Fatigue in Multiple Sclerosis [2018]
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- เผยแพร่เมื่อ 4 ส.ค. 2024
- Fatigue is one of the most common, most debilitating, and least understood of MS symptoms. Here we discuss ways of better understanding MS pathologic fatigue.
Concepts of "functional reserve" and spoon theory are discussed. Think of each spoon as a unit of energy. When you wake up you start your day with all your spoons! As you participate in daily activities, each one costs you a certain number of spoons (e.g. drive to work = 1 spoon; work 6 hours = 5 spoons). When you run out of spoons you have expended all your energy available for that day.
When you have MS, you wake up with LESS spoons to start your day. As the condition progresses and as you age over time, you start your day with fewer and fewer spoons. You can run out of spoons quickly. As such, PwMS often benefit when they "save spoons" at times...
Please leave your comments and questions below.
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Link to This Video: • Spoon Theory: Making S...
"Exercise: 9 spoons."
Do you find that after getting into an exercise routine you end up gaining spoons back faster?
Aaron Boster MD Good question, which I can't say I've tracked in any reliable manner. Sleep (full night) is the only sure way for my spoons to replenish. Consequently, I exercise last in the day but have very little left to fuel that exercise.
Here's a more realistic way for me to restate my comment, which is based solely on my experience, of course:
(# of spoons used for exercise) = (# of spoons left at time of exercise) - 1. Exercise quality and spoons remaining at time of exercise are directly proportional.
For anyone else out there who once found routine, rigorous exercise to be a sustainable morning ritual but is now humbled by a struggle with motivation, you're not alone.
Thanks, Dr. B, for putting such passion into the treatment of and education about MS.
During the first 3 weeks of an exercise program, I am very spoon deficient, but after I get over that hump, the exercise adds enough energy and improved sleep that I'm am positive spoons by doing it. :)
I swear I wake up with no spoons sometimes
Definitely worth discussing with your provider Susan! I have a playlist on fatigue, in case you wanted to see a bit more on the subject of fatigue in MS. #WeHaveMS th-cam.com/video/W9S-tYMy47o/w-d-xo.html
Hang in there, be gentle with yourself. It's tough, but we're all there with ya
Thanks a lot - Gr8 VDO
Oh when you hear others say "Even I am tired from 1-hour commute" a "Meh" comes to mind - Not many people understand
Now that "No job for me", Exercise snatches my spoons :-))
Woken up after 4 hours of sleep:
When I was 20 - I am ready to party again
When I was 40 - Say one thing and I will smack your face
Now - You have 3 Seconds to tell me why you woke me :-))
TY for sharing. 3 seconds isn't very long!! Ha!
Excellent video to show our support people. Thank you.
Right on AK Sonya! Spoon theory helps folks understand MS fatigue I find!
Ive used this theory to describe my energy levels to my daughter and why i need help sometimes. She says she gets it, but doesnt really. But when she feels she doesnt have energy, strangely enough she understands how few spoons she herself has, then i think sh gets it. I think for my daughter its going to be a learning curve, I've looked at the spoon theory and i think it applies very much to me. I can't have a hot shower anymore, it just leaves me feeling completely flat and unable to do anything.
I was diagnosed in 2013 best video I have ever seen about MS fatigue and the spoon theory.
wow! Thank you Silver! And thank you for watching. I think spoon theory is a great way to help others understand the chronic fatigue (like the pathologic fatigue associated with MS). Have you found it helpful in talking to others too?
This is a FANtastic way to explain what it takes for us on a daily basis, but then there is the joy of going to bed and not being able to sleep. I love the spoon theroy!!!
Great video doc! Loving your channel, very informative!!!
TY for the kind feedback Cathlene! Please help me get the word out to as many folks impacted by MS as possible!
Love Dr Boster he used to be my doctor. I moved to PA.
Love this analogy. It is so hard to explain fatigue to someone without MS. The MS society has a booklet the title is but you look so good. I get that all the time. Thanks for the spoons.
Great way to explain the spoon theory. I start most days with fewer spoons than that, even.
Excellent visual. Thank you
I was Dx with SPMS a very long time ago and have been struggling, suffering & coping with agonizing symptoms that quite often have me begging for relief. In my experience with family and "friends" it seems they just don't get it or they do not want to get it. They seem to practice cognitive dissonance rather than understanding and compassion. For _well_ over a decade all they want to say to me is "Why are you in a wheelchair, you don't look sick" and " you're still in bed? I don't know how you do it, I couldn't do it" . It doesn't matter that my Drs explain things to them, what my MRIs show and how much they see me suffering, As long as they can design their words in a hurtful manner, they are happy... sigh.
The Message It’s a challenge everyday and if you don’t have MS you won’t understand. Prayers sent your way. ❤️
I found MS group that help with living with MS.
Carmela Ann, thank you for the reply and for the prayers! I'm wondering about the MS group you found. Is it on the internet or maybe in your neighborhood? `Anna
The Message MS Frontiers 😀
aaah, I don't use Facebook. Thank you for responding to me so fast =)
`Anna
Pretty neat Dr B! Ty for this video as always 🙏
TY Matt!
This is a GREAT explanation!!!! I use all my spoons in these dang zoom meetings for work.
I for sure will do this. Thanks for the tips👍
Awesome sauce! #WeHaveMS
Your, 'spoon' theory is, brilliant!!!
I didn't invent spoon theory, but I find it very helpful in helping others understand pathologic fatigue associated with MS!
I've recovered quite a lot of basic functions. Now fatiuge is basically my only symptom. But it's brutal as hell. I wish I could improve it. I didn't know that MS kind of meant feeling like garbage 90% of the time
Thanks for this, the best explanation to fatigue I've seen and I've been looking into this lately. My diagnosis is pretty new, but I may have had the disease for a while before that. And these days I feel pretty drained after work, and have been wondering if this could be fatigue or not. I didn't think it was cos I can get through the work day. And I also didn't want it to be fatigue, I don't want new symptoms. I'm still not sure but I guess it might be.
YW Annika!
Thank You for sharing the Spoon Theory & Fatigue! It can be applied to chronic illnesses such as Crohns Disease, Ulcerative Colitis, and countless others!❤
Let's face it... Energy doesn't grow on trees...it's doled out to us in 🥄Spoons🥄
I didn't invent the spoon theory, but I am a student of it and use the concept to help folks in clinic understand chronic fatigue in MS. You're right, it can be used to help anyone understand chronic fatigue form any of the above conditions, spot on Audrey!
@@AaronBosterMD
Thank You👍🏻
The Spoon Theory was created by Christine Miserandino
www.butyoudontlooksick.com
She needed a simpler, visual way to help her friend understand the Lupus she suffered with.
As you well know, there are medical terms and such to explain specifics but nothing compares to something as relatable as a Spoon🥄
Kudos for using it in your practice👍🏻
All I know is Id been low energy for 2+ decades and now I literally can't keep eyes open, doze off constantly and INDEED it is literally debilitating.
I had fatigue to the point of literally being unable to get out of bed and numb legs. I started dexedrine last week and it has been a night and say godsend. I am able to do things like tidy up and laundry again as well as cook food. sorry for rambling , but I have been doing as much exercise as possible since I started the medication . I go for walks and I shoot hoops in basketball. I have noticed that when I exercise without pushing the limit my mood improves and I sleep better. I want to increase the amount of exercise I can do over time and slowly. I plan to start doing yoga tommorow. anyways this is lengthy and it's my experience. the fatigue prevented me from doing excercjze and i gained a ton of weight =\
I haven't had fatigue from MS much, but recently after 16 years, I feel like my normal 24 normal spoons collapsed sudenly to 4 or 6. Trying to get Lemtrada, but the process is very complicated. Doesn't help my very limited job has drastically increased it's needs. Oof, Ill probably apply for disability a few months after first infusion depending on it's consequences and how my spoons are doing later this year.
I took the Fibromyalgia fatigue 3-day class at the Mayo Clinic when I was diagnosed back in 2014; are there any classes available for people with MS to help make life better and to recognize the disease in ourselves? Your videos are so valuable but being in a class with other was incredible.
Makes perfect sense AK!
this proves I've spent all my spoons today.... I thought the title of this video was "MAKING FUN OF FATIGUE" - really.. I know I've been known to joke but I really thought that's what I read...my brain is burnt for the day. Yeah...all day at work in front of my computer...but I did take an involuntary nap. I hate that!
Not sure if I'll get an answer but here gies, my right foot has drop foot issues and I've had a full ocrevus infusion and now tge leg is having spasms, how can I help this? Makes walking awkward as hell and I have to stop and let it past
6 spoons? I wish. I think I'm dealing with 3 or 4 spoons. About 2-3 hours after I wake up I'm tired again. My last fare made me so fatigued and shaking that I thought I was going to die.
Howdy 77Avadon77! This is why I like spoon theory so much, it makes sharing concepts of pathologic fatigue conceptually easy for others to understand. That said, I'm sorry you're down to so few spoons and hope you can build up your reserves to ultimately add back a few of those spoons! #MSWarrior #WeHaveMS
@@AaronBosterMD How well does Aamantadine 100MG work? Do you have any experience with this anti-fatigue drug?
mildly effective in my experience. worth trying out and if not helpful after a month worth talking to your MS provider about other options. There are many other options.
@@AaronBosterMD thanks Aaron
I am very lucky to work remotely at home. Part of my lunch hour is resting. That helps so that I can finish my day.
Smart!!
Jennifer, may I ask what you do for work? I am looking for work at home opportunities, thinking of starting a VA business. :)
@@cathlenethomas5522 I work for a well known transportation company in the town that has our corporate office.
I am in my 19th year. My main duty is I schedule appointments for our drivers to get loaded and unloaded. Just in the past 2 years they have allowed several to work from home.
I wish you all the luck
I’m always without spoons all day
Dr. B🐻✍️
I wanted to link your video to a chronic fatigue disease channel where there's bearly any research. Or help as she went down her list of symptoms I swore she was explaining my life of the m s. Patient. As her shaky voice sounded just like mine. Hummm I wonder if that's fatigue. ¿ ? Hummm...
Here's the question,
Your a steller neroimmunoligist...🥇💪💨🤓💯🌠🌠🌠
So can this video help m.e. patients too?? Can chronic fatigue as it presents in m.s. present similar in other diseases.
If we're fatigued, weither from a symptom like in m s. or the whole actual disease, like in m.e. (chronic fatigue syndrome) are we just straight up fatigued pathologically? Or does it truely present differently?
And since these symptoms seem so similar in fashion since they have no help, could they find it here? In your videos where the symptoms are the same. But maybe this is my worst Idea ever .. idk.
Sincerely
👣 DIVINE🐣💨🤓💪
Hummm... Very undecided...
I just never want to make any person more frustrated in there disease process.
Aaron, would you say this applies to lesions in the spine because my legs fatigue so fast if they are under the mildest stress like a simple crouch to weed the gardens or tie shoe laces. My legs just give out after 30 seconds that I have to sit and let them recover which they do. Is this due to Re wiring in the spine where my lesions are?
It could be caused by damage to the motor pathways that "run" your leg for sure. This is most likely explained by a spinal cord lesion. short answer, yes that's possible!
Aaron Boster MD Thanks for reply. This is why I can no longer run or even walk fast. When I cross the road and a car is heading towards me i go to move faster and the weirdest feeling in my legs comes as my brain demands action and legs don’t want to move any faster. Thanks for your reply. Very helpful.
YW Flood & Fidler!
great question
What do you think about the studies showing that exercise decreases fatigue in MS?
I think that they are legit. If you SLOWLY increase your exercise over time you can build up your functional reserves and basically add a spoon or two to your day!
I think that exercise advice should be given with caution especially when it comes from those who are not familiar with MS. I was feeling well at one time and thought that I could start an exercise routine. All that happened is that I had a relapse. The amount of exercise someone with MS can tolerate is relative to their situation. Some can only handle a walk of one block while others can tolerate a weekly exercise routine. This is why the spoon theory is so good as an explanation. Exercise can take away all of your spoons if you choose the wrong level of exercise for your particular level of MS.
Super helpful to hook up with a Neuro PT when starting off so they can guide you through this balancing act (not too much exercise but not too little).
Exercise has definitely helped me BUT I had to get my sleep consistent first. My balance is a lot better because of exercising. I am still exhausted and fatigued but I am better in other ways.
I’ve had MS since 2010, and I never use this. I think of my energy more like a bank account. But mostly, I can’t get on board with it because it is so poorly written. Honestly. It’s god-awful. I’ll use my words to discuss my fatigue as and when it needs to be disclosed. But I don’t dig on infantilising myself or participating in ‘in-grouping’. I have MS, and I am NOT a spoonie.
nc
nc?
Get up take shower, blow dry hair, make up, get dressed = six spoons. Work =4 spoons. Equals no spoons left by 4p.