How to track super-severe fatigue levels?

[Jeshyr]

How do you measure severe fatigue day-to-day? I want to be able to track my fatigue levels day-to-day to see if I'm getting worse or better or whatever. Also I like data and making pretty graphs. I want to be able to usefully reduce it to a number or a mild/moderate/severe level for tracking on a spreadsheet, on PatientsLikeMe or FlareDown or so forth. I find symptom tracking really useful for seeing what's working and how I'm doing.

I USED to track how often I got out of the house as a fairly good proxy for fatigue, this worked quite well when I was able to leave the house once or twice a week - if I got out of the house twice a week it was a good week, more than twice was great, once was average, zero was a bad week. But now I'm getting out only about once a month, on average, and that's more a reflection of how urgent the medical appointments are than a reflection of whether I feel well enough to cope with going out, so it's not a good measure of fatigue at all.

So now I have nothing to measure. My fatigue is ALWAYS at a level that leaves me bedridden so every day feels like "crashingly awful crushing severe constant fatigue" so a solely subjective measure like a visual-analogue scale doesn't measure anything useful either.

Got any ideas?

 

[IrisRV]

Got any ideas?

When I was at that stage (bedbound, crushing fatigue) my specialist recommended recording HR and BP (including calculating pulse pressure systolic-diastolic) several times a day and under different circumstances if possible. With notes about the conditions they were taken under and symptoms at the time, of course. One HR and BP measurement she felt was critical was first thing in the morning before I walked around at all. Ya know, before I even got out of bed.

There was a really nice phone app for recording all that, can't remember the name now BP something, but it had lots of useful graphs and some statistics goodies. It could even link to your BP machine wirelessly if you were willing to buy the right kind, iirc.

Lots of interesting patterns showed up, including a correlation to fatigue level which then gave me a more numerical scale for fatigue. Well, more like numerical indirect measures. Still helpful for tracking whether I was getting better or worse.

That data also gave us some ideas for mitigating the fatigue under some circumstances. Very worth doing imo.

 

[loki]

i don't like to give recommendations for drugs so see this as an idea and ask your doctor...
have you ever tried low dose corticosteroids in combination with a stimulant? this should kick you out of the house

 

[Jeshyr]

When I was at that stage (bedbound, crushing fatigue) my specialist recommended recording HR and BP (including calculating pulse pressure systolic-diastolic) several times a day and under different circumstances if possible. With notes about the conditions they were taken under and symptoms at the time, of course. One HR and BP measurement she felt was critical was first thing in the morning before I walked around at all. Ya know, before I even got out of bed.

Oh, it's years since I'd bothered to do that. Might see if it kicks anything up this time. Last time I didn't find anything correlated with fatigue levels but you never know... might be different now.

 

[Cort]

When I was at that stage (bedbound, crushing fatigue) my specialist recommended recording HR and BP (including calculating pulse pressure systolic-diastolic) several times a day and under different circumstances if possible. With notes about the conditions they were taken under and symptoms at the time, of course. One HR and BP measurement she felt was critical was first thing in the morning before I walked around at all. Ya know, before I even got out of bed.

There was a really nice phone app for recording all that, can't remember the name now BP something, but it had lots of useful graphs and some statistics goodies. It could even link to your BP machine wirelessly if you were willing to buy the right kind, iirc.

Lots of interesting patterns showed up, including a correlation to fatigue level which then gave me a more numerical scale for fatigue. Well, more like numerical indirect measures. Still helpful for tracking whether I was getting better or worse.

That data also gave us some ideas for mitigating the fatigue under some circumstances. Very worth doing imo.

That's a great idea. That's what Dr. Klimas's patients use, I believe, to determine whether they should do their exercises the next day. If it was increased over baseline - that was a sign to hold back.

It would be great to get a bunch of patients together and do that.

 

[Cort]

How do you measure severe fatigue day-to-day? I want to be able to track my fatigue levels day-to-day to see if I'm getting worse or better or whatever. Also I like data and making pretty graphs. I want to be able to usefully reduce it to a number or a mild/moderate/severe level for tracking on a spreadsheet, on PatientsLikeMe or FlareDown or so forth. I find symptom tracking really useful for seeing what's working and how I'm doing.

I USED to track how often I got out of the house as a fairly good proxy for fatigue, this worked quite well when I was able to leave the house once or twice a week - if I got out of the house twice a week it was a good week, more than twice was great, once was average, zero was a bad week. But now I'm getting out only about once a month, on average, and that's more a reflection of how urgent the medical appointments are than a reflection of whether I feel well enough to cope with going out, so it's not a good measure of fatigue at all.

So now I have nothing to measure. My fatigue is ALWAYS at a level that leaves me bedridden so every day feels like "crashingly awful crushing severe constant fatigue" so a solely subjective measure like a visual-analogue scale doesn't measure anything useful either.

Got any ideas?

What about a step tracker? Even if you're taking just a few steps in the house that number might fluctuate significantly from day to day depending on how you are feeling. ???

Good luck on getting better!

 

[Who Me?]

I've been wanting to track my HR but I don't know enough about monitors to know what to get and they are $$$

 

[Jeshyr]

I've come up with a rubric something like this - for background I'm 99% bedridden and spend my nights in a waterbed (plus 2-3 hour afternoon nap) and most of my days in a hospital bed in my living room with the computer/TV set up to use while lying down in the day bed.

Very bad day:

• Not able to type for some/all of day (using mouse only)
• Significant extra time (more than an hour) resting/sleeping in waterbed instead of day bed
• Not able to watch TV or listen to long-form audio

Bad day:

• Cancelled any plans
• Not able to sit in recliner at all
• Not able to manage bath
• Only able to watch super-boring TV (BBC documentaries, etc.)

Medium day:

• Able to sit in recliner chair if visitors come, for art, etc.
• Able to manage a short bath if one was planned
• Able to get dressed
• Can watch any TV subject

Good day:

• Leave house in reclining wheelchair (unplanned or extend planned trip) or do out-of-bed activity inside house
• If no trip out of house, did not need afternoon nap