For healthy people, navigating the day doesn’t take much planning other than determining the order of things. Lunch first or grocery shopping, they might wonder. Either way, it doesn’t matter and both will get done on most days. And if choosing is required, it’s usually not for lack of energy.
But for the five million people with fibromyalgia who live with near constant pain and fatigue, energy becomes a precious resource and daily life tasks must be prioritized because there simply isn’t enough for everything.
The fibromyalgia spoon theory explains how people with chronic illnesses ration energy
The fibromyalgia spoon theory was developed by a woman named Christine Miserandino who has lupus. Lupus is an autoimmune disease that is closely related to fibromyalgia, a disorder involving widespread pain, fatigue, and trouble sleeping, among other symptoms.
The two syndromes are so closely related that doctors frequently have difficulty distinguishing between them, according to Arthritis Today. In any case, the fatigue associated with the disorders makes completing basic life tasks difficult.
The fibromyalgia spoon theory goes something like this: A person starts the day with a certain number of spoons. Each spoon represents a burst of energy. Showering in the morning might require a spoon. Getting dressed is another spoon.
Miserandino wrote about this theory, recalling her meeting with a friend in a diner. The friend wondered what living with lupus was like—not from a physical perspective, but from a psychological one. What does it feel like on the inside, the friend wondered.
Miserandino serendipitously thought of the spoon theory, which has since spawned the term “spoonie” to describe fibromyalgia warriors, while trying to help her friend understand the rigors of living with a chronic illness.
On a whim, Miserandino grabbed a dozen spoons in sight and handed them to her friend. “Here, you have lupus,” she told the friend. The friend counted the spoons, realized she had 12, and jokingly asked if she could have extra.
“No,” Miserandino told her, suddenly realizing that she has hit upon a good way of explaining the unexplainable—what it’s like on a psychological level to evaluate your day, every day, and know that you do not have the energy for everything.
Miserandino and her friend went through the day. Showering? That’s a spoon. But wait, Miserandino says, the implications of chronic illness begin even before you rise. She describes:
“You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine, you might as well give up all your spoons for today and tomorrow too.”
Getting dressed cost another spoon, but Miserandino tells her friend about the decisions that go into getting dressed. If a particular part of the body hurts, or is bruised from the disease, that influences the day’s outfit choice.
Already down multiple spoons and not even out of the house yet, the friend began to understand that not all the day’s desired activities would be completed. Miserandino writes:
“The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”
The fibromyalgia spoon theory continues to dinner. While a healthy person has an array of choices for dinner, a person experiencing pain, fatigue, or nausea from a chronic condition must approach mealtimes a little differently. With one spoon left, Miserandino explains:
“If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then, I also explained that I didn’t even bother to add into this game that she was so nauseous that cooking was probably out of the question.”
Life at a slower pace is a key for living with chronic illness
Learning to slow down is the hardest thing Miserandino says she’s had to learn. Learning to feel left out, be okay with saying no, and prioritizing so the most important activities get done early enough in the day when there’s still spoons available—these are the things people without chronic illnesses can’t understand but the fibromyalgia spoon theory helps explain.
People with fibromyalgia must manage pain, fatigue, and other symptoms while attempting to live a full life, but unfortunately, most people find their lives changed in one or more aspects.
A survey conducted by the American Pain Foundation and National Fibromyalgia Association found these symptoms impact everything from relationships to parenting to important life decisions.
The results were compiled from online questionnaires answered by more than 2,550 people with fibromyalgia and hundreds more with other chronic pain conditions.
Fibromyalgia symptoms influenced people’s decisions to have children because patients feared about their ability to take care of a child or go through the experience of childbirth. Meanwhile, 95% of respondents with children under the age of 18 said pain made parenting difficult because it diminished their ability to enjoy highlights in their children’s lives and shepherd kids to school, events, and social activities.
Nearly all of those who responded said they altered their daily routine to simplify it or make it easier, similar to Miserandino’s fibromyalgia spoon theory.
Nearly 70% said fibromyalgia impacted their ability to take care of relatives.
Another study, commissioned by health news site HealthyWomen, found that 85% of patients with fibromyalgia consider the disease a burden on their lives, and 64% are concerned their condition is not taken seriously enough. Nearly half of survey respondents reported stunted careers while 67% said keeping up with household chores was no longer an option.
Other impacts included the ability to spend time with friends and family and lessened intimacy with partners.
How has fibromyalgia impacted your daily life?
Image by Nicki Mannix via Flickr
I have hade fibromyalgia for a long time now and find stress uses a lot of spoons .
We absolutely agree. We have written extensively on reducing stress and how it’s related to pain. We hope you find something useful here for helping to save a few of your spoons! https://paindoctor.com/tag/stress/
Thanks for stopping by the blog!
Stress is HUGE. I have explained to my family how important it is to keep my stress level down, but they don’t listen or care how things they can prevent from happening would be helpful to my health. They just keep causing stress which in turn causes me to physically hurt more than I already do.
We are so sorry to hear that. We hope the spoon theory can help you better explain your condition to your family.
I found this article extremely helpful and will use the Spoon Theory to explain to my friends and family what is going on. I have Fibromyalgia as well as Osteo-arthritis and need both knees and hips replaced. I have also had a Discectomy and a spinal fusion as well as permanent damage to my Sciatic nerve resulting in numbness and tingling of both legs. Oh and I also have IBD. Most of my “Spoons” are used up by noon and it seems that nobody understands how completely useless I feel. Thank you for publishing this important information.
Hi Cindy! We are so very glad it could help. Framing how we’re feeling in a way so that other people can have a somewhat better understanding of our struggle is so very important.
I have had fibromyalgia since 9 yes now. I find that stress is a major trigger for pain. I do attuned to this fact that as soon as I get pain I know I am stressed deep inside. So I shake off the stress by going away from the situation or just do my Buddhist chants Also one just needs to accept that those affected will need to choose activities little more carefully than those with this condition. So be wise, accept and most importantly …be happy
Thank you for your wonderful insight Geetika!
As I was reading this, I could not believe how on-point it is. The only other thing I would add is that the spoon theory applies to the typical every day… if you get sick or have major stress are other issues, which spoonies seem to have in spades, it seems like you only get two or three spoons per day. Finally, there is the dreaded FIBRO WALL, in which all bets are off. The fibro wall is like hitting a cement wall that pops up out of nowhere for no apparent reason, usually right in the middle of some activity, and it instantly removes any spoons you have left for that day. If it is the beginning of a flare-up, you can be on empty for up to a week or sometimes even more. That’s what makes fibro the cruelest to me (a formerly non-stop person) … It has taken away the ability to do spontaneous or really any physical activities I previously loved, like skiing, hiking, playing with my son…
Hi JT — thanks for stopping by the blog. We absolutely agree that spoons can be so variable and disappear so quickly, especially when there’s a pain flare-up. Thanks for sharing!
I used to be a go getter but since my wreck I hurt all over all the time. It’s frustrating to go from being active to having to ask for help just to get dressed. The spoon theory helps to explain to others where my energy level is.
We are so glad it helps Kim, and send good vibes your way. We know how life-altering a chronic pain condition can be.
I’ve had Fibro since I was a teenager. As I became older more symptoms appeared. I was Miss “I’ll do it myself” if I want it done right. I worked hard and pushed through the pain and exhaustion. I didn’t know what was wrong with me … off and on I’d go to Dr’s searching for an answer, but none ever came. I began to struggle, and found myself wanting to do less and less. I thought to myself “Have I become lazy?”
Finally getting a diagnosis at 44yrs old, was a relief and a burden. “There is no cure”, are not the words you would like to hear. My pain is at it’s all time worst now. If I’m without my fibro meds, all bets are off! Mornings are met with tears and the struggle to even get out of bed, without them. The stress, anxiety, depression, feeling useless, and left out … it all comes crashing down. When I’m on the meds I manage to get by, but it’s still a feeling of “What will I be able to have strength for today?” I like the Spoon Theory, it is helpful to have another way to explain our daily obstacles. But when others look at us, they can’t see our pain. We look fine to them …
I try my best to stay positive and keep a smile on my face. I don’t want to bring anyone down with me, and I definitely do not want pity! I make the most of my favorite day, Monday surprisingly. It’s my Improv workshop that day, and they’ve become my family. My boyfriend of 9yrs and I, get to be someone else on stage, and that gets me out of my head, even if only for the moment. It takes a lot of my spoons, but it’s worth it!
Hi MJ — Thank you so much for sharing your story! Fibro is such a difficult diagnosis, that it always helps to have people around who understand what you’re going through.
Hello I was recently diagnosed with fibromyalgia. I woke up one morning hurting so bad that I could not get out of bed. I thought it was the flu. It did not ease up and my husband was at his wits end trying to understand why I could not get out of bed. I had been going through testing for my Crohns which had flared up and thought maybe that had something to do with how I was feeling. Each day got worse and the fatigue was horrible. I am prone to Migrains and they have become more frequent.
I have been to several doctors and have been told that I am an experiment in progress. I have R/ A, Migrains, Crohns, fibromyalgia and arthritis. Treat one, make others worse. I recently went to UVA medical hospital and between specialists I was put on methatrixate. They say this will help the Crohns, R/A, Migrains and arthritis but the fibromyalgia needs different meds. I lost 2 of my children in the last 5 years and this is what caused this fibromyalgia flare up. You know the funny thing? I had an employee who had fibromyalgia and she did not work much. I did not believe in fibromyalgia. Thought it was a name given for pain that doctors had no other name for. Recently apologized to her. The pain and fatigue are indescribable.
Hi Bev — Thanks so much for stopping by the blog and sharing your story. Fibromyalgia is so hard to bear alone. We’re sending good thoughts your way.
This is helpful in describing energy. I’ve been suffering from fibromyalgia since I was a teen, now 32. I’ve had migraine and joint problems increasing the older I get. I finally was given a diagnosis a year ago after my fibromyalgia got so out of control I could barely walk.. people would chuckle and say it’s all in my head, this is probably the most hurtful part of the disease is appearing to not be I’ll and being I’ll beyond a heathy persons imagination. This spoon theroy is useful but I wish there was a way for people to understand how awful the pain really is.. I think this is why so many people with the disease commit suicide, no one understands, very few can relate and if you don’t have something or someone to counteract all the negativity in your life, suicide seems to be the only way to escape the constant torture. I thankfully have a 2yo that gives me the escape from the psychological battle to help survive.. as great as the spoon theory is, we still need more ways of helping healthy people understand what we go through, it’s so much more than pain and fatigue I hope and pray there’s doctors coming up with not only better medications but also better diagnosis.. 15 years is too long to suffer without diagnosis, and by time I got diagnosis it was to late. The disease had gotten so out of control that nothing is working for me…
May 12 is fibromyalgia awareness day, don’t forget to raise the awareness
Hi Dane — Thanks for leaving your comment here. Fibromyalgia, and all invisible diseases, are so difficult to live with. For more support, we encourage you to reach out to some chronic pain support groups. It helps to have other people who intimately know what you’re struggling with. We’ve listed our favorites here and there’s also some in the comments that other readers have recommended: https://paindoctor.com/chronic-pain-support-groups. We hope that helps. Thanks for stopping by the blog.
I have severe anxiety mixed with depression. While I’m on medication to combat it, this theory represents what a typical day is like for me, and I’ve used it to explain to my kids what mommy goes through and why some nights, I can barely pull myself out of bed. Why some plans get changed and/or put off. After explaining they’ll ask me “Mommy, how many more spoons do you have today?” this theory is just so spot on.
Thanks so much for stopping by the blog. We’re so happy this has been helpful to you when talking to your kids.
I am so very thankful for this “spoon” description. There is really no better way to explain the daily fight with diseases like these. If a person doesn’t “get it” or a Dr. doesn’t believe “it” with this explanation, they have no heart. To begin with, I don’t claim to have the worst case of Fibro Myalgia and haven’t been diagnosed. I have pain points all over my back that can be felt as lumps that are like exposed nerve endings when touched and constant pain in other areas. My energy level is zero. I had 2 strokes at age 20, a blood disorder that caused me to lose all but 3 ft of my small intestines at the same time due to blood clots so I am on daily doses of blood thinner. I have another mystery disease – RLS – now named Eckbom Willis or Restless Legs syndrome. Most nights I am awake until 4:30 am due to the seizure-like movements of the RLS. Mine is not just leg movements but head to foot jerking and I have been known to throw myself out of bed. Florida is a state that takes away medication rather than issue it to people who really need help. In the past 3 years, I have truly thought I would die from lack of sleep and exhaustion from pain. I have never abused medication and dislike the feeling some of them leave me with. I and some of you may feel you wake up with one or two “spoons” to last you 24 hours. Support for each other and support groups where we can get together even twice per year to share makes so much difference (I know, lots of spoons gone in the effort) – and we must find some laughter in it. Laughter is healing even when it is silly. Help one another and don’t forget to give love as that is what connects us as humans.
Thank you so much for sharing your story Denise! We’re glad the spoon theory helps you!
Thanks for this article. It reminds me where i came from, health wise that is.
My life is certainly effected by my fibromyalgia. My husband’s too. I often make decisions based on it like if I cook or not, clean up that day, drive tge car and even work has suffered. Just yesterday I had to come back in the house because the pants I had on were hurting my side.
I’m so thankful my husband understands. He helps me do everything from cleaning dishes & even floors now to folding wash. He is the reason i havent lost my mind from the side effects of chronic pain.
I’ve learned to live with a #2 on the pain scale but when it’s 5-6 or worse, the rest of the world gets shut out. The isolation of friends not understanding or thinking it’s all in your head makes your depression even worse which enhances the pain level. Catch 22.
The mental anguish takes a toll too. I can only garden for a short time (5-15 mins or so) or I may be out of commission by dinner time. If I over do anything, I pay for it later. Pacing myself has become habitual. Even my husband reminds me from time to time. It make me feel like I’m 90yrs old already but I’m in my 50’s. Sad.
I’ve lived with fibromyalgia so long I forgot I was living with it. Even my granddaughter has made notes for me to remind me of important things like taking my medicines. My memory has paid the price from fibro fog I suppose.
Hi Terese — We are so sorry to hear about the pain and challenges you’ve faced with fibromyalgia. We hope the spoon theory provides some support for dealing with this condition.
I have Rheumatoid Arthritis and fibro…have had them since I was 40 and am now 70…the first 2 yrs I was in a wheelchair as they werent sure what it was and I was going for test after test. I just wanted an answer but could no longer work because of the pain. Finally in 1988 after seeing all kinds of specialists the head of Rheumatology at UCLA diagnosed me with Fibro and RA. Back then there wasnt much you could do but at least I had a name for what was wrong with me…and I knew I wasnt imagining it like some Drs had said..I was put on Disability and he had me slowly start exercising but to listen to my body and not overdo…if I needed to rest to rest…I try not to plan things 2 days in a row so my body can rest..I take Lyrica and find it helps me fo my Fibro..
Hi there — We are so sorry to hear about the effect fibro has had on your life. Thanks for sharing your story here.
Love the “Spoon Theory” right on point. I was Diagnosed with Fibro about 19 years ago – but have had muscle (NOT JOINT) pain all my life. but when I was younger/child to teens I was very active – skating every day, riding bikes, what most kids did in the late 50’s and 60’s. but as I got older as a teen, I was beginning to have a difficult time lifting professional roller skates or even lift my legs. – It’s been down hill since. I do feel blessed that I have not had as much difficulty/pain as others. I have been able to maintain my FIBRO most of the time – but as others have stated – STRESS is the key factor that triggers the FIBRO and makes me have really bad periods of time. I have to go through various meds to get the right one for that time. right now I have been having muscle spasms all over and have switched from Cymbalta to Savilla, but it hasn’t helped yet. really having a bad spell for now. Hopefully this too will pass – soon… thank you for the updates and information.
Thanks for stopping by the blog Irene! We are so glad you’ve found some relief and wish for less pain in your future.
Hi
I have fibromyalgia which was diagnosed ten years ago. Back then my doctor was not understanding of the condition but is great now and is on the committee in Flintshire North Wales UK to get it recognised as a disability officially which will bring greater understanding of the condition. As for me I hold down a full time teaching assistant job and run my home. I will not give in to the condition and carry on regardless this is never easy but it’s the way I am. I understand the concept of the spoons but would literally panic and go into melt down if I ran out of spoons before the day had hardly started. It’s one thing thinking about something but visually seeing the spoons diminish I would not be able to deal with. I have lots of annoying symptoms with it like constant ringing in the ears that I have sort of become used to and this is part of me and I have to live with it. What happens when I’m old is my concern I can’t see me coping as well then.
Hi Helen — Thanks for talking about your experience here!
I have fibromyalgia was only diagonased after years running g to drs I was diagnosed at 36 I’m now 53 I just collapsed one day couldn’t get out of bed when the pain goes into my spine no meds work I take morphine patches maybe get one day a few hours pain free .one day my house is clean next it’s all over the place making a meal can’t now cos I can’t get it together forget pots on fibromyalgia fog I’d terrible miss appointments when 38 I had a child Dr was shocked so was I 5 months didn’t no and I was in the change hospital couldn’t believe it at the end was on a support belt and crutches.as I couldn’t walk.noe she’s a teenager and it’s hard cos I can’t do the thinks I want to I used to be so active walked everywhere now I’m a shadow of myself .my family don’t understand and it’s and lonely illness cos people then stop asking you to go out.aleays tired and stress flares it up .I’ve osteoporosis as well.in my 30 I felt 70 now I feel like 90 .Dr put me on bacolfene and lyrica and it helped my muscles sometimes.sometimes I think of not being here but I have three children and it’s really hard cos I’m not there mum anymore I’m just a shell existing in this pain constant.ive explained u no when your in childbirth and the pain at 10 well that’s wat this is like only there’s no gas and air r any pain relief and it’s just constant x
Hi Kim — Thanks for leaving your comment here. Fibromyalgia, and all invisible diseases, are so difficult to live with. For more support, we encourage you to reach out to some chronic pain support groups. It helps to have other people who intimately know what you’re struggling with. We’ve listed our favorites here and there’s also some in the comments that other readers have recommended: https://paindoctor.com/chronic-pain-support-groups. We hope that helps. Thanks for stopping by the blog.
I was tearing up as I read this because explaining Fibromyalgia is just so difficult. Doctors look at me like I’m nuts and normal people? Forget it! I am 22, diagnosed 8 or 9 years ago (freshman year of high school, but have been suffering as far back as I can remember. I would wake up at night crying and the doctors said it was growing pains. The cold would physically hurt me and grown ups would tell me I was being dramatic. The diagnosis helped me feel like someone believed me but now I fight the stigma that it “isn’t real”… I work two jobs, six days a week and just finished being a full time student on top. I just gave my notice at one job because my boss just does not understand how exhausted I am. People think that because I am young and functional, I must be faking. What I’d give to switch places with a healthy person for a week. I want to know what it feels like to be healthy so badly… I’ve come to terms with the fact that unless someone experiences the pain, they will never understand. But now that I’ve read this and fully understand this theory, I FINALLY have a way to explain the fatigue! I couldn’t be more thankful that I’ve found this! 🙂
Thank you so much for sharing your story Meg and we are so glad the spoon theory helps you!!! We also know that fibromyalgia is so difficult to live with. For more support, we encourage you to reach out to chronic pain support groups. It helps to have other people who intimately know what you’re struggling with. We’ve listed our favorites here and there’s also some in the comments that other readers have recommended: https://paindoctor.com/chronic-pain-support-groups.Thanks for stopping by the blog!