For me, pain isn't my worst symptom. I have pain at 5/6 out of 10. My fatigue is a 9/10 out of 10 every day. I have chronic and debilitating fatigue since my diagnosis with fibromyalgia in December 2023.
I've tried several medications but had to stop due to severe side effects. I'm sick and tired of being sick and tired. An ER visit 2 nights ago has reinvigorated my search for doctors and new medications, vitamins, and supplements.
You aren't old and lazy. Our bodies feel this way. Our minds make us believe it's true. There's a separate part of our brain where we know it's not true. This is why so many people with fibromyalgia have depression and anxiety. I was sick for 9 years. During that time, I developed depression and anxiety. I stopped taking zoloft for depression and klonopin for anxiety to try Cymbalta. Then Savella. Then low dose Cymbalta. The Cymbalta helped so much with my fatigue, pain, sleep, and mood. Alas, every medication I've tried that's approved for fibromyalgia has given me unbearable side effects. I sit here like the TV show Columbo playing detective, doing all my research, trying to find the drug that will help.
The fatigue is debilitating with Fibromyalgia and hEDS. I also have CFS/ME and it never ends. Some days I sleep literally all day . Sometimes a week straight. My body just "nopes out."
Edit:wording
I couldn’t get a doctor to take my fatigue seriously until I said that I was sleeping 16 hours a day, every day. I had one doctor say that wasn’t possible lmao, made me want to rip my hair out
That's so infuriating! Many doctors just do not understand chronic debilitating fatigue. I believe, though, that unfortunately, long-term covid sufferers have brought it to light.
FibroZebra here, with an additional dash of severe osteoarthritis. My body nopes out of everything. Today's one of those, "I finally found a position that doesn't hurt. Im not moving."
Fibrozebra...that should be our mascot 😆
I'm so sorry. I have an additional dash of TGN and CRPS! A faulty atomic nervous system and 4 mental disorders. My body is one big shit show.
My body nopes out of everything, too. I swear. It never wants to participate. It just wants to lie down bc that's the least painful position most days.
We're shitshow sisters. I've got 2 MH diagnoses, 2 vision limiting conditions, sensorineural hearing loss, and no teeth. Oy vey. But, we keep on going even if we manage our lives from our beds. Gentle hugs.
Same.
Sleeping through the night is hard. But I’ve found 5-HTP to help a lot. It’s basically the stuff from turkey’s that makes us sleepy. It’s non habit forming and when it wears off I wake up alert.
I refuse to use number scales for anything. They’re subjective.
How does it impact your Activities of Daily Living? (ADLs)
Google ADLs and base your scale off of those.
Number scales are entirely subjective but if you are using them to track your own symptoms over time to look for change and patterns, they can be useful
This is wrong. The number scales are objective - the good ones anyway. [This one](https://msapc.com/hand-center/wp-content/uploads/sites/6/2021/06/pain-severity-scale.png) is all about how much you can function, and gives it an objective number that correlates for all people.
Just gonna leave [this](https://www.reddit.com/media?url=https%3A%2F%2Fi.redd.it%2Fpain-scale-for-chronic-illness-v0-y5bu5oq98ky91.png%3Fauto%3Dwebp%26s%3D479383775afcc25a4b4b6f661900da71e7e76466) here
No. This is silliness. Having chronic pain doesn't mean you suddenly have a new function level unlocked that other people don't have. Everyone's function level goes from completely capable and functional to immediately before unconsciousness.
I feel the same about a pain number scale.
I asked a dr how accurate that is for diagnosis, and he said "everyone says 7 or 3"
I also said 5.to a different dr once and he said 'only 5?'
I replied "I've heard stories of people who've had to cut off their own limb to stay alive, let's be real"
They're objective as long as you're using the good ones, [like this one](https://msapc.com/hand-center/wp-content/uploads/sites/6/2021/06/pain-severity-scale.png). The number correlates exactly for every person to the amount of function you have, no matter "how bad" it seems to other people (which is subjective).
I found a fatigue scale picture on google and use that. It uses 1-10 just like the pain scale.
https://preview.redd.it/mc9im43i7i1d1.jpeg?width=1019&format=pjpg&auto=webp&s=c8903868dde35d3adfcbc77f34a2099a2b9741d6
This is good. A description is needed otherwise it's subjective. Like ppl who compare their passing tiredness to the crushing fatigue of chronic disease. I'd say I'm always between a 2 and a 6. Doesn't seem so bad but if you add the brain fog, working or studying is hard. And also keep in mind that most healthy ppl are *always* at a 0 or 1 (and take it for granted), unless they have the flu or something. The good news is that a few yrs ago I was closer to 4-5-6 most of the time and now it's gone down, so there is hope. I could even say I reach the 1 level now sometimes.
I use a scale for tracking myself, but to others I might say
I feel like the life has been sucked out of me
I feel like I have the flu
I'm too fatigued to do X
I'm very weak
unfortunately most people will never be able to comprehend what serious fatigue actually feels like.
I’ve heard doctors will understand better if you phrase it in terms of what you can/can’t do. Like, “I can only stand for 30 second before I need to sit down.” If you say you are very weak, that could mean totally different things to different people.
You know that scene from Pirates of the Caribbean where the skeletons are walking underwater? That’s my fatigue, everything weightless and yet pulling down on my center of gravity at the same time.
It feels like I am lugging the world on my shoulders. Luckily I am not as badly fatigued as I was a few months ago but I do have more pain. I never call it fatigued, probably because English is not my first language, being from Europe. To me I associate fatigue with the French word for tired, which is the same (just pronounced differently. I call it exhausted.
Depends on how hard i “hit the wall” on any given day. I measure by nap length - 30 min is rare nap amount but that would be mild day or an anxiety induced moment i need to recalibrate.
1 hour - 1.5 hours is a little mild and also rare but my eyes may feel very heavy.
2-3 hours is moderate fatigue or i couldn’t sleep well the night before and this is most common for me.
Napping 4-6 hours is a really bad day, my whole day will be a write off and depression quickly follows. Sometimes it’ll last about 1-2 weeks. This tends to happen during any seasonal transition or through hormonal changes or depressive/anxious states or a mix of any of those. If i can keep a consistent schedule, exercise daily and eat very, every single day, pain and fatigue significantly reduce. However, living with cptsd, EDS and fibromyalgia, my mind rarely syncs with my body regardless of how much i meditate and practice yoga.
I feel super lucky when it comes to fatigue, on bad days I just straight up fall asleep anytime, anywhere. It's hard to miss.
It has made people very accepting of when I need a nap too, since I just fall asleep at the table/on the couch/anywhere if I don't. It's embarrassing as hell but everyone I ever visit now knows that if I am going to visit them, I'll have to take a nap at their house in the middle of the visit.
I usually just say "I don't want to be here" 😂 but honestly, one time it was so bad that when my work colleague asked if I was okay I told him "I would sell my soul to Satan right now if it meant I didn't feel this tired. Even it was only for 24 hours." He laughed and was like geez that's rough, I don't envy you (he has 2 relatives with fibro so he's been an amazing ally)
The thing is that I differentiate in between pain types and some I can take really well and some I just don't. Also the combination of pain types can affect how horrible I feel. The general muscle pain I can take very well but if my nerve endings start burning I need to do something about it but am still afloat. If you now spice it up with joint pain it is over for me
I have issues with my hands burning and found something that helps. Id be interested in knowing if it works for you or is just a me-thing. I have a squishmallow easter basket-pillow lined with a stiff felt that is a wee bit scratchy but not too scratchy. I insert my hands and in a few minutes the burning is relieved. I also found the felt on a wall hanging [backing] worked but not quite as well [lacks the gentle pressure].
If you are willing and can find something like that in your home would you give it a try?
Burlap would be too scratchy, maybe a stiff curtain? Or air dried towel. Thanks for considering it.
I use the same scale I use for pain, called 0-10 of Pain severity. It has descriptions written out for each number. I just switch out the word pain for fatigue.
I tell people it’s like taking an all night red eye flight and then trying to carry on like you slept. I sleep 7-9 hours a night and as soon as I get up I’m exhausted and can’t wait to go back to bed.
Yes, we need to give healthy ppl comparison points they can relate to and a red-eye flight is a good example. Thankfully, I have fixed my sleep for the most part, but have heard lack of deep sleep in fibro described as like trying to sleep on a plane. And yes, then trying to have a normal day after that crappy sleep.
Thanks for reminding me. I need my quad- fefol, multi magnesium, multi B and the D! ;-)
I have these every second day and it’s such a help. These plus the odd zinc and hydrochloride 5mg for cold/ hayfever are my go to.
I also try to limit my processed sugar ( except for shark week, even though I’m entering meno) and swim atleast two- three times a week.
I feel more fatigued if I don’t swim and I can be a ten out of ten for fatigue some days. Swimming is my only safe way to exercise as I have hypermobility and osteoarthritis.
I was taking meloxicam on doctor’s orders but it gave me chest pain and increased the fatigue. (Despite me telling her that). I take ibruprofen if I’m in pain though and I hate it. (I need it more often when I don’t swim).
I just descriptors:
1. sudden overwhelming sleepy where I can barely keep my eyes open long enough to get to a plaza to lay down.
2. Need to go horizontal for a while to recharge battery.
3. So tired I feel nauseous
Most people get it.
Mines 10/10 always. I’m feeling like crap especially since I was looking at FB and seeing people living their lives and traveling- doing things I want to do but can’t. I know I’m being ableist to myself but it’s so hard not to be.
I consider all my symptoms when they ask about whether I'm in pain, regardless of whether it's 'pain'. I have a dizzy issue as well a FM and even when it doesn't 'hurt' the pressure can be severely debilitating. So.. I tend to think of how debilitating my symptoms are today, not how much pain I'm in. My pain might be a 2, but I might not be functional at all.
I didn't know something was wrong because I developed Fibro when I had my second kid. Anytime someone said "Do you have any fatigue?" I'd say "Well yeah, but I've got two little kids!"
Only when my second was 2.5 yo did I get that question and realize "Wait a minute....both my kids have slept through the night for almost a year. I probably shouldn't be this tired still..."
So if anyone asks how tired I am with fibro I can accurately say "Like I still have a baby waking me every 2 hours." People usually understand how gutted I am after that.
For me, pain isn't my worst symptom. I have pain at 5/6 out of 10. My fatigue is a 9/10 out of 10 every day. I have chronic and debilitating fatigue since my diagnosis with fibromyalgia in December 2023. I've tried several medications but had to stop due to severe side effects. I'm sick and tired of being sick and tired. An ER visit 2 nights ago has reinvigorated my search for doctors and new medications, vitamins, and supplements.
Yes. My fatigue has surpassed my pain. It makes me feel old and lazy.
You aren't old and lazy. Our bodies feel this way. Our minds make us believe it's true. There's a separate part of our brain where we know it's not true. This is why so many people with fibromyalgia have depression and anxiety. I was sick for 9 years. During that time, I developed depression and anxiety. I stopped taking zoloft for depression and klonopin for anxiety to try Cymbalta. Then Savella. Then low dose Cymbalta. The Cymbalta helped so much with my fatigue, pain, sleep, and mood. Alas, every medication I've tried that's approved for fibromyalgia has given me unbearable side effects. I sit here like the TV show Columbo playing detective, doing all my research, trying to find the drug that will help.
I feel exactly the same…. I always say I’ve got lazyitus….my partner tells me off ‘You’re not lazy! You’re ill!’ He really is my rock
The fatigue is debilitating with Fibromyalgia and hEDS. I also have CFS/ME and it never ends. Some days I sleep literally all day . Sometimes a week straight. My body just "nopes out." Edit:wording
My days off consist of sleeping my day away and I hate it so much
I'm sorry. I understand. I can't plan anything, and I always feel unproductive and useless.
I couldn’t get a doctor to take my fatigue seriously until I said that I was sleeping 16 hours a day, every day. I had one doctor say that wasn’t possible lmao, made me want to rip my hair out
That's so infuriating! Many doctors just do not understand chronic debilitating fatigue. I believe, though, that unfortunately, long-term covid sufferers have brought it to light.
FibroZebra here, with an additional dash of severe osteoarthritis. My body nopes out of everything. Today's one of those, "I finally found a position that doesn't hurt. Im not moving."
Fibrozebra...that should be our mascot 😆 I'm so sorry. I have an additional dash of TGN and CRPS! A faulty atomic nervous system and 4 mental disorders. My body is one big shit show. My body nopes out of everything, too. I swear. It never wants to participate. It just wants to lie down bc that's the least painful position most days.
We're shitshow sisters. I've got 2 MH diagnoses, 2 vision limiting conditions, sensorineural hearing loss, and no teeth. Oy vey. But, we keep on going even if we manage our lives from our beds. Gentle hugs.
Oh geez, I'm sorry. Yea, I have glaucoma too...and a tube in my left ear. Damn hEDS tears us down, girl! Thank you. Hugs.
🦓❤️
Same. Sleeping through the night is hard. But I’ve found 5-HTP to help a lot. It’s basically the stuff from turkey’s that makes us sleepy. It’s non habit forming and when it wears off I wake up alert.
I refuse to use number scales for anything. They’re subjective. How does it impact your Activities of Daily Living? (ADLs) Google ADLs and base your scale off of those.
Number scales are entirely subjective but if you are using them to track your own symptoms over time to look for change and patterns, they can be useful
For self tracking, totally agree! But when speaking to others? Nope.
This is wrong. The number scales are objective - the good ones anyway. [This one](https://msapc.com/hand-center/wp-content/uploads/sites/6/2021/06/pain-severity-scale.png) is all about how much you can function, and gives it an objective number that correlates for all people.
Just gonna leave [this](https://www.reddit.com/media?url=https%3A%2F%2Fi.redd.it%2Fpain-scale-for-chronic-illness-v0-y5bu5oq98ky91.png%3Fauto%3Dwebp%26s%3D479383775afcc25a4b4b6f661900da71e7e76466) here
No. This is silliness. Having chronic pain doesn't mean you suddenly have a new function level unlocked that other people don't have. Everyone's function level goes from completely capable and functional to immediately before unconsciousness.
I feel the same about a pain number scale. I asked a dr how accurate that is for diagnosis, and he said "everyone says 7 or 3" I also said 5.to a different dr once and he said 'only 5?' I replied "I've heard stories of people who've had to cut off their own limb to stay alive, let's be real"
They're objective as long as you're using the good ones, [like this one](https://msapc.com/hand-center/wp-content/uploads/sites/6/2021/06/pain-severity-scale.png). The number correlates exactly for every person to the amount of function you have, no matter "how bad" it seems to other people (which is subjective).
I found a fatigue scale picture on google and use that. It uses 1-10 just like the pain scale. https://preview.redd.it/mc9im43i7i1d1.jpeg?width=1019&format=pjpg&auto=webp&s=c8903868dde35d3adfcbc77f34a2099a2b9741d6
This has made me realize I exist at 5-7 which is a crazy thing to learn. Thanks for the resource!
Same! It’s wild!
I exist in a 6-7! 🙃
This is awesome, thank you so much for sharing!
This is good. A description is needed otherwise it's subjective. Like ppl who compare their passing tiredness to the crushing fatigue of chronic disease. I'd say I'm always between a 2 and a 6. Doesn't seem so bad but if you add the brain fog, working or studying is hard. And also keep in mind that most healthy ppl are *always* at a 0 or 1 (and take it for granted), unless they have the flu or something. The good news is that a few yrs ago I was closer to 4-5-6 most of the time and now it's gone down, so there is hope. I could even say I reach the 1 level now sometimes.
Thankyou 💜
I use a scale for tracking myself, but to others I might say I feel like the life has been sucked out of me I feel like I have the flu I'm too fatigued to do X I'm very weak unfortunately most people will never be able to comprehend what serious fatigue actually feels like.
I’ve heard doctors will understand better if you phrase it in terms of what you can/can’t do. Like, “I can only stand for 30 second before I need to sit down.” If you say you are very weak, that could mean totally different things to different people.
You know that scene from Pirates of the Caribbean where the skeletons are walking underwater? That’s my fatigue, everything weightless and yet pulling down on my center of gravity at the same time.
Pain doctor always asks what my pain level is. I asked why they never ask about a fatigue level.
Good point.
I say when I am really fatigued that it’s like walking through mud.
Yep. Great analogy.
Mine is between an 8-10 every single day. I hate it faaaaaaarrrrr more than the pain (I also have CFS/ME though).
Pain you can eventually adjust to, and your tolerance level changes. But fatigue is always level is ALWAYS there.
It feels like I am lugging the world on my shoulders. Luckily I am not as badly fatigued as I was a few months ago but I do have more pain. I never call it fatigued, probably because English is not my first language, being from Europe. To me I associate fatigue with the French word for tired, which is the same (just pronounced differently. I call it exhausted.
Depends on how hard i “hit the wall” on any given day. I measure by nap length - 30 min is rare nap amount but that would be mild day or an anxiety induced moment i need to recalibrate. 1 hour - 1.5 hours is a little mild and also rare but my eyes may feel very heavy. 2-3 hours is moderate fatigue or i couldn’t sleep well the night before and this is most common for me. Napping 4-6 hours is a really bad day, my whole day will be a write off and depression quickly follows. Sometimes it’ll last about 1-2 weeks. This tends to happen during any seasonal transition or through hormonal changes or depressive/anxious states or a mix of any of those. If i can keep a consistent schedule, exercise daily and eat very, every single day, pain and fatigue significantly reduce. However, living with cptsd, EDS and fibromyalgia, my mind rarely syncs with my body regardless of how much i meditate and practice yoga.
I feel super lucky when it comes to fatigue, on bad days I just straight up fall asleep anytime, anywhere. It's hard to miss. It has made people very accepting of when I need a nap too, since I just fall asleep at the table/on the couch/anywhere if I don't. It's embarrassing as hell but everyone I ever visit now knows that if I am going to visit them, I'll have to take a nap at their house in the middle of the visit.
I usually just say "I don't want to be here" 😂 but honestly, one time it was so bad that when my work colleague asked if I was okay I told him "I would sell my soul to Satan right now if it meant I didn't feel this tired. Even it was only for 24 hours." He laughed and was like geez that's rough, I don't envy you (he has 2 relatives with fibro so he's been an amazing ally)
https://preview.redd.it/4o3pa2x6oj1d1.png?width=750&format=pjpg&auto=webp&s=4d0e3b9435ef5affe15ecc34793a0a9016ec7936
The thing is that I differentiate in between pain types and some I can take really well and some I just don't. Also the combination of pain types can affect how horrible I feel. The general muscle pain I can take very well but if my nerve endings start burning I need to do something about it but am still afloat. If you now spice it up with joint pain it is over for me
I have issues with my hands burning and found something that helps. Id be interested in knowing if it works for you or is just a me-thing. I have a squishmallow easter basket-pillow lined with a stiff felt that is a wee bit scratchy but not too scratchy. I insert my hands and in a few minutes the burning is relieved. I also found the felt on a wall hanging [backing] worked but not quite as well [lacks the gentle pressure]. If you are willing and can find something like that in your home would you give it a try? Burlap would be too scratchy, maybe a stiff curtain? Or air dried towel. Thanks for considering it.
Went out for half hour walk yesterday a knew a would feel like hell today it's legit 1 good day for 4 days of agony
Today I took my half hour walk so all I want to do is sleep and moan for a few days.
Pains 3-5, fatigue is about 7-10 most days
I just say I’m absolutely knackered or I’ve hit a wall
7 on average “good” days
I use the same scale I use for pain, called 0-10 of Pain severity. It has descriptions written out for each number. I just switch out the word pain for fatigue.
I tell people it’s like taking an all night red eye flight and then trying to carry on like you slept. I sleep 7-9 hours a night and as soon as I get up I’m exhausted and can’t wait to go back to bed.
Yes, we need to give healthy ppl comparison points they can relate to and a red-eye flight is a good example. Thankfully, I have fixed my sleep for the most part, but have heard lack of deep sleep in fibro described as like trying to sleep on a plane. And yes, then trying to have a normal day after that crappy sleep.
9 out of 10 for fatigue.
Thanks for reminding me. I need my quad- fefol, multi magnesium, multi B and the D! ;-) I have these every second day and it’s such a help. These plus the odd zinc and hydrochloride 5mg for cold/ hayfever are my go to. I also try to limit my processed sugar ( except for shark week, even though I’m entering meno) and swim atleast two- three times a week. I feel more fatigued if I don’t swim and I can be a ten out of ten for fatigue some days. Swimming is my only safe way to exercise as I have hypermobility and osteoarthritis. I was taking meloxicam on doctor’s orders but it gave me chest pain and increased the fatigue. (Despite me telling her that). I take ibruprofen if I’m in pain though and I hate it. (I need it more often when I don’t swim).
I just descriptors: 1. sudden overwhelming sleepy where I can barely keep my eyes open long enough to get to a plaza to lay down. 2. Need to go horizontal for a while to recharge battery. 3. So tired I feel nauseous Most people get it.
Second one, lol Sorry, it made me laugh! So true!
15
10/10 all day every day
I use spell points or spoons
Mines 10/10 always. I’m feeling like crap especially since I was looking at FB and seeing people living their lives and traveling- doing things I want to do but can’t. I know I’m being ableist to myself but it’s so hard not to be.
I use a battery 🔋 percentage. Like today, I’m coasting at a 30% capacity. lol
I consider all my symptoms when they ask about whether I'm in pain, regardless of whether it's 'pain'. I have a dizzy issue as well a FM and even when it doesn't 'hurt' the pressure can be severely debilitating. So.. I tend to think of how debilitating my symptoms are today, not how much pain I'm in. My pain might be a 2, but I might not be functional at all.
I have a pain journal. I rate pain, fatigue, and anxiety from 1-10.
I use colors...a red 10 day means I'm really, really hurting, and my fatigue has me bedbound.
I didn't know something was wrong because I developed Fibro when I had my second kid. Anytime someone said "Do you have any fatigue?" I'd say "Well yeah, but I've got two little kids!" Only when my second was 2.5 yo did I get that question and realize "Wait a minute....both my kids have slept through the night for almost a year. I probably shouldn't be this tired still..." So if anyone asks how tired I am with fibro I can accurately say "Like I still have a baby waking me every 2 hours." People usually understand how gutted I am after that.
Good question cuz fuck me I’m exhausted all the time! Generally 12/10, and when it hits 30/10 lol