#fatigue scale

I suffer from severe and nearly constant headaches that require talking to a lot of different doctors and difficulty noticing them build up.

Years ago an ER doctor handed me a poorly formatted but incredibly useful 10-point pain scale with a number, key word, and short description of how one might be unconsciously responding to the pain. It had no information on who created it and I've never seen it anywhere else.

On Tumblr, again uncredited, I came across a really great and similar fatigue scale, but it was formatted in such eye-searing colors I could barely read it from fatigue. So again I cleaned it up and added it to my collection.

And then I ran up against tracking apps that were otherwise very good, but used a 4-point scale instead on a 10-point scale, so I added a conversion.

And then I ran up against my neurologist preferring the Traffic Light Scale, so I added a conversion for that in both a black & white and (gentler on the eyes) color version. My neurologist was very impressed with this scale and the conversions, so I updated the online copies so she and others can print them out from PDFs or save the images. She noted that a big reason that chronic pain patients are under-treated is that pain is so subjective and people who are used to always being in some pain under-report the severity. From my experience and many other people I've shown them to, these charts are very good at guiding people to more accurate responses and helping healthcare providers get on the same page.

So I'm sharing these updated versions on here again.

Pain Rating Scale

Green, 0/4, 0/10 - No Pain - Pain free.

Green, 0/4, 2/10 - Minimal - Pain is barely noticeable; tightness.

Green, 1/4, 3/10 - Mild - Feel a low level of pain entering awareness only when my attention is devoted to it.

Yellow, 1/4, 4/10 - Uncomfortable - Pain is troubling but can be ignored most of the time; am able to continue activities.

Yellow, 2/4, 5/10 - Moderate - Moderate pain but no break in activity or concentration; guarded movement patterns.

Yellow, 2/4, 6/10 - Distracting - Pain is troubling and breaks through concentration but is tolerable; activity level changes.

Red, 3/4, 7/10 - Distressing - Pain is intense and preoccupies my thinking; can complete tasks but it is difficult and must cease some demanding activities; considering pain medication or other pain reducing agent.

Red, 3/4, 8/10 - Intense - Severe pain that makes concentration difficult; can do only non-demanding activities; taking pain medication, etc. Can't carry on a conversation well, pacing , etc.

Red, 4/4, 9/10 - Severe - Cannot concentrate on anything else; sweating, unsteady breathing, can do almost nothing. Can barely talk.

Red, 4/4, 10/10 - Immobilizing - Excruciating pain, constant; unable to move.

Fatigue Rating Scale

Green, 0/4, 0/10 - Not tired at all.

Green, 0/4, 1/10 - Slightly tired, but still able to carry on as normal with little to no difficulty.

Green, 1/4, 2/10 - Finding everything more effort than usual, but still able to carry on.

Yellow, 1/4, 3/10 - Tiredness makes it hard to enjoy activities that are usually fun, but still able to work or study (with some difficulty).

Yellow, 1/4, 4/10 - Possibly able to do some work or studying, depending on how much effort it takes. May choose to work or study from home. Avoiding activities that take a lot of energy.

Yellow, 2/4, 5/10 - Mostly unable to work or study (except low effort tasks that can be done from home) can go out (for example to buy food) but only if essential.

Yellow, 2/4, 6/10 - Too tired to go out, but still able to move around the house and do activities that require little energy and focus. Preparing a meal is difficult. Can't work or study.

Red, 3/4, 7/10 - Doesn't need to lie down and can walk around the house, but can't stand for more than a few minutes without resting. Finding it hard to eat some foods. Can't focus on anything easily.

Red, 3/4, 8/10 - Able to sit up for a while and walk around the house if absolutely necessary. Unable to eat most food. Holding a conversation is difficult.

Red, 4/4, 9/10 - Able to sit up for a short time and can walk short distances (with difficulty), e.g. to get a drink or go to the toilet. Can't eat.

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I made my own pain and fatigue scale charts. Because I'm so adept at overcoming my symptoms the normal pain scale doesn't really work for me. I adjusted my numbers so that I could change the number into something I could tell a doctor when they inevitably ask me to rate my pain.

[Image Description: Pain Scale Chart with rainbow gradient background for each row, starting at red and ending at blue.

Row 1: Mine Drs Pain Scale Description

Row 2: 10 X I am not leaving my bedroom or bathroom, someone needs to bring me food and I need something to dull the pain or the pain will cause tears.

Row 3: 9 X I am not leaving my bedroom and bathroom for anything other than food.

Row 4: 8 10 Speaking is difficult. It is no longer practical to do activities outside of the bathroom or bedroom, but they can be done with assistance.

Row 5: 7 9 Necessary care activities are sacrificed. Academic activities and social activities can no longer be tolerated.

Row 6: 6 8 My pain is tiring. Paying attention is difficult. All activities require pacing and extra effort.

Row 7: 5 7 My pain is so distracting it is making me tired. It is hard to think. Necessary care activities are no longer all doable.

Row 8: 4 6 My pain is so distracting it is making me tired. It is harder to think. Necessary care activities are starting to be limited.

Row 9: 3 5 I can continue to do most activities

Row 10: 2 4 My pain bothers me but I can ignore it most of the time

Row 11: 1 3 My pain bothers me, but I can ignore it most of the time.

Row 12: 0 2 I am aware of my pain only when I pay attention to it

Row 13: X 1 My pain is hardly noticeable

Row 14: X 0 I have no pain. END Image Description]

[Image Description:

Fatigue Scale Chart with rainbow gradient background for each row, starting at red and ending at blue.

Row 1: Mine Drs Fatigue Scale Description

Row 2: 10 X Can barely sit up, needs assistance to get out of bed. Holding conversations is impossible. Laying down for most of the day is necessary. It is difficult to eat. Focusing is strenuous.

Row 3: 9 X Able to walk and stand for short distances. Holding conversations is difficult. Laying down for most of the day is necessary. It is difficult to eat. Focusing is strenuous.

Row 4: 8 10 Able to walk and stand for short distances. Holding conversations is difficult. Sitting for long Periods of time is difficult. It is difficult to eat. Focusing is strenuous. Preparing a meal isn’t possible.

Row 5: 7 9 Holding conversations is difficult. Sitting or standing for long Periods of time is difficult. It is difficult to eat. Focusing is strenuous.

Row 6: 6 8 Sitting or standing for long Periods of time is difficult. It is difficult to eat. Focusing is difficult. Preparing a meal is difficult.

Row 7: 5 7 Standing or walking for long periods is difficult. It is difficult to eat. Focusing is difficult.

Row 8: 4 6 Standing or walking for long periods is difficult. Focusing is difficult.

Row 9: 3 5 Cooking for longer than 15 minutes is extremely challenging.

Row 10: 2 4 Not everything can be done in the day. Activities are slowed down. Difficult mental challenges are sacrificed.

Row 11: 1 3 Tiredness makes it difficult to enjoy fun activities.

Row 12: 0 2 Things take more effort than usual, but everything is still doable.

Row 13: X 1 Slightly tired but still able to carry on as normal

Row 14: X 0 Not tired at all

END Image Description.]

Feel free to use them yourself if you like them!

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Edit p2:

So these charts I made them for showing people and using them to talk about my pain. The numbers are just sort of a reference point . The words are what's important. The fact that it is a relationship is what's significant.

I've got chronic pain and chronic fatigue. I'm never not in pain and I'm never not tired. These are based on the main pain and fatigue scales that I usually get shown at places that aren't specialized in treating pain or fatigue.

I use these when talking to my family, using the number that relates to the mine side. I use these with my non pain doctors who don't treat my pain or fatigue. I use the Drs number when talking to Drs. Anything that in those X spots is also 10. Drs don't like pain larger than 10 because they think you're faking it.

I made these after getting covid. It was about a year later and I still couldn't describe my pain in terms of the standard scale because I couldn't conceptualize pain properly because covid had completely broken my internal perception of pain intensity. Because I went from never having gone to 10/10 or ever being there for very long to about 2 weeks of what I could only describe as 13/10 pain. It was logarithmically higher than anything I my brain could process. And my brain didn't process it. I just sort of cried a lot, slowly.

If you are ever using a personalized pain scale or something you found online with a doctor you should show them what you're talking about. You need to make sure they understand you.

I posted this because I was having a hard time saying that while I was at a 3 in terms of abilities, I was in just as much pain as when I had been previously at a 5. I needed something that showed what I was talking about.

It feels very strange adding all these disclaimers so far after, but I've been thinking "it's too late" every time Ive realized someone might use it in a way that wouldn't help them. And then ignoring the problem for a while.

We've got 3k notes on this. People keep looking at it. The disclaimers are nessesary. I'm sorry they weren't there before.

I just remembered that I specifically made this because I needed to be able to point at a number and have my parents be able to know what that meant. They don't have training in the pain scale. They don't know what it means. But they do know what I mean now when I say I'm at a 6. They understand me.

The point is, this says that it's used for talking to doctors and it's really not. It's for my family mostly. And my PCP who keeps asking what pain I'm at and I just need to say a number that communicates the thing she wants to know (that's why the Drs thing is on there. That's the number she needs. She doesn't care. It's weird. She's weird.)

But it is mostly for my family. It's for describing how I'm doing.

I found this helpful scale in reddit!

0% - FIT & WELL FOR AT LEAST THE PAST 3 MONTHS No symptoms at rest or following activity. Capable of full-time employment.

[image ID: Two screenshots of a me/cfs scale from the Page mesupport.co.uk. The scale is called expanded disability status scale (EDSS)

10% - GENERALLY WELL No symptoms at rest. Occasionally mild symptoms may follow activity. Capable of most forms of full-time employment.

20% - OCCASIONAL MILD SYMPTOMS AT REST More noticeable symptoms following activity. Some restriction of capabilities which require physical exertion. Able to work full-time but difficulty with work that requires physical exertion.

30% - MILD SYMPTOMS AT REST Limited ability to carry out some tasks which require physical exertion. May be able to work full-time.

40% - MILD OR MODERATE SYMPTOMS AT REST Variable ability to carry out tasks associated with normal daily activity. Unable to work part-time in a job involving frequent physical exertion. May be able to work part-time in other types of employment.

50% - MILD TO MODERATE SYMPTOMS AT REST Moderate to more severe exacerbation of symptoms following physical and/or mental exertion. Unable to carry out any strenuous physical tasks. Able to perform light duties or deskwork for several hours a day provided adequate rest periods are provided.

60% - MODERATE SYMPTOMS AT REST Moderate to severe symptoms following any form of physical or mental exertion Unable to carry out any strenuous duties. Able to carry out light duties/deskwork for one to three hours per day. Generally not confined to the house.

70% - MODERATE TO SEVERE SYMPTOMS AT REST Severe symptoms follow any physical or mental activity. Able to perform deskwork or light duties for one or two hours during the day. Often confined to the house and may require wheelchair assistance at times,

80% - MODERATE TO SEVERE SYMPTOMS AT REST May only be able to carry out a very minimal range of physical activities relating to personal care (eg. Washing, bathing). Frequently unable to leave the house and may even be confined to wheelchair or bed for much of the day. Unable to concentrate for more than short periods of time.

90% - SEVERE SYMPTOMS AT REST Bedridden and housebound for much of the time. Experiences considerable difficulties with many aspects of personal care. Marked problems with mental function (e.g. memory, concentration). Requires a great deal of practical support.

100% - SEVERE SYMPTOMS ON A CONTINUAL Basis Bedridden and incapable of living independently. Requires a great deal of practical social support.

As a person with chronic pain and chronic fatigue, I often find it helpful to use scales to communicate how I'm doing, both for myself to contextualize it and so others have an idea how I'm doing. It's especially helpful for doctors who take you more seriously when you have data.

But I'm really bad at just assessing it in my head, especially consistently. Internalized ableism means I always feel like I'm just being a wimp and I really minimize my pain. So assessment scales that make me look at my behaviors really help break me out of that and be more honest. They also keep me more consistent so the days is more useable.

Both scales in a spreadsheet

Pain Scale

This scale was given to me in a hospital with no indication of where it came from in a really basic badly formatted table. This is my cleaned up version formatted to be saved on a phone or printed.

0 - No Pain - Pain free

2 - Minimal - Pain is barely noticeable; tightness

3 - Mild - Feel a low level of pain entering awareness only when my attention is devoted to it

4 - Uncomfortable - Pain is troubling but can be ignored most of the time; am able to continue activities

5 - Moderate - Moderate pain but no break in activity or concentration; guarded movement patterns

6 - Distracting - Pain is troubling and breaks through concentration but is tolerable; activity level changes.

7 - Distressing - Pain is intense and preoccupies my thinking; can complete tasks but it is difficult and must cease some demanding activities; considering pain medication or other pain reducing agent.

8 - Intense - Severe pain that makes concentration difficult; can do only non-demanding activities; taking pain medication, etc. Can't carry on a conversation well, pacing , etc.

9 - Severe - Cannot concentrate on anything else; sweating, unsteady breathing, can do almost nothing. Can barely talk.

10 - Immobilizing - Excruciating pain, constant; unable to move.

Fatigue Scale

This was floating around Tumblr in the colorful version. I can't print it, I can't read it with the colors when I'm tired, and I wanted the scales to normalized going the same direction so here's my formatting version:

0 - Not tired at all.

1 - Slightly tired, but still able to carry on as normal with little to no difficulty.

2 - Finding everything more effort than usual, but still able to carry on.

3 - Tiredness makes it hard to enjoy activities that are usually fun, but still able to work or study (with some difficulty).

4 - Possibly able to do some work or studying, depending on how much effort it takes. May choose to work or study from home. Avoiding activities that take a lot of energy.

5 - Mostly unable to work or study (except low effort tasks that can be done from home) can go out (for example to buy food) but only if essential.

6 - Too tired to go out, but still able to move around the house and do activities that require little energy and focus. Preparing a meal is difficult. Can't work or study.

7 - Doesn't need to lie down and can walk around the house, but can't stand for more than a few minutes without resting. Finding it hard to eat some foods. Can't focus on anything easily.

8 - Able to sit up for a while and walk around the house if absolutely necessary. Unable to eat most food. Holding a conversation is difficult.

9 - Able to sit up for a short time and can walk short distances (with difficulty), e.g. to get a drink or go to the toilet. Can't eat.

10 - Can barely sit up. Needs assistance getting out of bed.

Sources