I upgraded from a Fitbit One (carried in pocket) to a Fibit Charge (wrist) and wore them simultaneously for a month. The Charge adds on about 10% extra steps compared to the One.
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I upgraded from a Fitbit One (carried in pocket) to a Fibit Charge (wrist) and wore them simultaneously for a month. The Charge adds on about 10% extra steps compared to the One.
Binkie4
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270 so far today, and it's about 10pm.
It's seriously reduced over last two years. That's low for me because I am so tired, say usually 600-1000 daily.
Have avoided looking at weekly Fitbit steps because last time I looked it was below 7000.
Edit: removed last line
It's seriously reduced over last two years. That's low for me because I am so tired, say usually 600-1000 daily.
Have avoided looking at weekly Fitbit steps because last time I looked it was below 7000.
Edit: removed last line
Wonko
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I omitted to mention that the answer I gave earlier relates to a fairly active period, a couple of months when I've been more active than I've been for a few years, hardly a remission but an improvement, so it's likely my normal number of steps per day is below the figure I gave.
I'm currently in a bit of a slump/minor crash and may have more info in a month or so, I'm waiting on the release of the garmin vivoactive 3, on all apart from price it looks good. It'll go back if it's HR alert feature is as unreliable as the vivoactive 2's was but either way it will supply at least a weeks more activity info (It may go back regardless)
I'm currently in a bit of a slump/minor crash and may have more info in a month or so, I'm waiting on the release of the garmin vivoactive 3, on all apart from price it looks good. It'll go back if it's HR alert feature is as unreliable as the vivoactive 2's was but either way it will supply at least a weeks more activity info (It may go back regardless)
This is an interesting thread. I bought a pedometer ages ago but was too sick to set it up. Think you had to be able to walk a certain number of steps to set it up and it was way more than I could manage. I was also struggling to understand the instructions.
I'm going to see if I can find it and work out what's required. My husband also has a Fitbit which he has never used so I might check that out too.
I like the idea of being able to "measure" how I'm going month to month and year to year. I think I've deteriorated a bit this past year but it's hard to say.
I'm going to see if I can find it and work out what's required. My husband also has a Fitbit which he has never used so I might check that out too.
I like the idea of being able to "measure" how I'm going month to month and year to year. I think I've deteriorated a bit this past year but it's hard to say.
Before I got ill it was 8,800/day and I was trying to get it to 10,000. The past year it's been around the 3,300 mark but dragged down by a relapse a few months back - I had two months of well below 1,000, with quite a few days below 250 (literally the distance doing bed/bathroom/sofa/bed).
The main thing to note however is how variable it is - this is definitely a relapsing/remitting disease for me.
The main thing to note however is how variable it is - this is definitely a relapsing/remitting disease for me.
TigerLilea
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I was considering buying a Fitbit but after hearing from several people that it records arm movement, I decided to stick with my Omron pedometer. I know that it is accurate and I don't need anything fancy.
TigerLilea
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Yes, you can wear the Fitbit on your ankle. It gives a more accurate step count, however, any of the other features won't work as well (ie calorie count and heart rate).Possibly a dumb question but can you wear a Fitbit around your ankle? I'm just interested in measuring steps. I have skinny ankles
Gingergrrl
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Great thread @Jesse2233 and I'd posted (in my Rituximab thread) about my recent nightmare with trying to find a pedometer (and have now tried three!) but NONE of them work for me... it is truly unbelievable
I predominantly use a motorized wheelchair and the pedometer either picks up the motion of the chair and counts it as "steps" which are not real or on the flip side, when I do walk inside of my apt without the wheelchair, I walk at a slow and abnormal pace and absolutely NOTHING registers on the pedometer.
I first tried Fitbit (pedometer not watch), then a random brand that I cannot remember the name (both of which I returned to Amazon for a refund) and then a third one by "Yamaxx". I still have the third one, hoping that some day I will get it to work for me. I tried walking in my apt while holding it in my hand (no steps registered) and also clipping it to my waist (and no steps registered). I had a friend clip it to her waist and within a short period of time she had registered over 200 steps just walking around my apt. I don't know if the number was accurate but at least it recognized that she was alive... which it does not do for me
But to answer your question, I voted for the first choice of less than 200 steps per day (which is my best guess without a pedometer to measure it). Prior to my treatments, the number of steps per day for the last three years would have been zero. I have never been bed-bound but have used a wheelchair since Oct 2014. Now that I can walk approx 200 steps per day (compared to zero), I am thrilled but my dream is to be able to walk a normal distance outside of my apt without the wheelchair. If I could do this, I would consider myself in remission.
I was able to walk from my apt to the elevator one time, very slowly, with my best friend pushing the wheelchair behind me (which was 216 steps) and we all cried tears of joy, but I have never been able to replicate this a second time
So I am not sure it is ever going to happen which is maddening b/c without being able to walk outside, I require someone to push my wheelchair every time we go out. I have not gone out (even to grocery store) on my own in 3 yrs. I am fully independent with the motorized chair inside of my apt (which was unimaginable even a year ago) but I dream of independence in the outside world so I am no longer a burden on family and friends to drive and push my wheelchair everywhere we go. I order everything humanly possible on Amazon to reduce this burden on them.
Pre-illness I could run on a treadmill, climb multiple flights of stairs, even walked in 5K's for charity and had no limitations. I want to believe this issue is fixable since I was not born with it and have improved in every other area. Sorry to get off-track, this topic is just constantly on my mind b/c right now it is the thing I want most in life (to walk again without wheelchair).
I predominantly use a motorized wheelchair and the pedometer either picks up the motion of the chair and counts it as "steps" which are not real or on the flip side, when I do walk inside of my apt without the wheelchair, I walk at a slow and abnormal pace and absolutely NOTHING registers on the pedometer.
I first tried Fitbit (pedometer not watch), then a random brand that I cannot remember the name (both of which I returned to Amazon for a refund) and then a third one by "Yamaxx". I still have the third one, hoping that some day I will get it to work for me. I tried walking in my apt while holding it in my hand (no steps registered) and also clipping it to my waist (and no steps registered). I had a friend clip it to her waist and within a short period of time she had registered over 200 steps just walking around my apt. I don't know if the number was accurate but at least it recognized that she was alive... which it does not do for me
But to answer your question, I voted for the first choice of less than 200 steps per day (which is my best guess without a pedometer to measure it). Prior to my treatments, the number of steps per day for the last three years would have been zero. I have never been bed-bound but have used a wheelchair since Oct 2014. Now that I can walk approx 200 steps per day (compared to zero), I am thrilled but my dream is to be able to walk a normal distance outside of my apt without the wheelchair. If I could do this, I would consider myself in remission.
I was able to walk from my apt to the elevator one time, very slowly, with my best friend pushing the wheelchair behind me (which was 216 steps) and we all cried tears of joy, but I have never been able to replicate this a second time
So I am not sure it is ever going to happen which is maddening b/c without being able to walk outside, I require someone to push my wheelchair every time we go out. I have not gone out (even to grocery store) on my own in 3 yrs. I am fully independent with the motorized chair inside of my apt (which was unimaginable even a year ago) but I dream of independence in the outside world so I am no longer a burden on family and friends to drive and push my wheelchair everywhere we go. I order everything humanly possible on Amazon to reduce this burden on them.
Pre-illness I could run on a treadmill, climb multiple flights of stairs, even walked in 5K's for charity and had no limitations. I want to believe this issue is fixable since I was not born with it and have improved in every other area. Sorry to get off-track, this topic is just constantly on my mind b/c right now it is the thing I want most in life (to walk again without wheelchair).
Isaiah 58:11
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During my "ok" periods 4,000 seems to be my ceiling as well.
I have spent years with an average about 600. Like yours, this is basically bathroom trips and a visit or two to the kitchen. I am actually thoroughly surprised that the severe patients in that recent study were getting up more than I as, except for a few defined periods, I have not thought of myself as severe. I do wonder what criteria they used.
Mine was also far over average: I did not own a car and walked to school, to my jobs, to the stores and bank, etc. And, I took fitness classes. Goodness. I hope to have that energy again!
TigerLilea
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Unfortunately, walking at a slow pace doesn't register on a pedometer. Have you tried counting your steps and recording them on either a note pad or on your phone/computer?
I used to be able to walk on my treadmill for about 10/15 minutes, but since being on Amoxicillin a year and a half ago, I find I can't walk for more than a couple of minutes anymore.
Dechi
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Normal is about 10 000 steps a day from what I've always known. I average 2000-3000 steps a day staying in the house all day. I don't think it's possible to walk only 5 000 steps if you work outside the house.
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I was easily over 20,000 every day before I had this. I would have told you, if asked, I wasn't active enough and could do more exercise for my health. I ticked the mildly active or sedentary categories on quizzes. Because everyone around me was fitter and more active still.
When I first got this wrist band I was struggling and wanted something to tell me whether I'd done anything at all in a day, it felt like I'd done nothing at all. I was not able to hit the 10,000 steps and thought that was pathetic for me. I'm a firefighter, a world traveller, a physicist, a go getter, so of course I'd be doing more than the 'minimum average for health'. But my rock hard willpower, the thing that has never let me down before, only ran me into the ground.
Where I live, you can't walk anywhere without walking up down or along a slope. You can't do anything without carrying loads. Everything is manual.
I worked my way up to 8000 a day with that willpower, good days and bad (but not crashes when my body simply wouldn't).
Someone had to tell me that 6000 is more normal for a mild case, that office workers only just manage this. What a relief! When I cut down my steps I could finally read my emails again. I could finally live through a day without disabling pain. I could stand my husband walking around without wondering why he tortured me.
Now I do try to keep my physical activity up and sacrifice the mental, in hopes that I can not entirely lose condition and get all the health risks I gather that entails. But some days I splurge and live online, for sanity.
So, I may be reducing my steps further, allowing myself a little more brain in exchange for another loss of fitness. 2000 seems more naturally sustainable (except that it's hard around here to do only that if I want to eat and pee). My world was designed around fit and active.
My fear is that I may be higher functioning now becasue my previous high level of fitness means that things don't count as exertion at too low a level. I've lost condition surprisingly slowly. I am not what a doctor would call deconditioned if you test me. Not at all on the first day. The second day is an entirely different thing.
I know/think/fear/believe that every increment I drop back, is not coming back. But I'm starting to think that the less I do the more I can do. Bank more energy and get out of debt. Opposite of my healthy constitution.
When I first got this wrist band I was struggling and wanted something to tell me whether I'd done anything at all in a day, it felt like I'd done nothing at all. I was not able to hit the 10,000 steps and thought that was pathetic for me. I'm a firefighter, a world traveller, a physicist, a go getter, so of course I'd be doing more than the 'minimum average for health'. But my rock hard willpower, the thing that has never let me down before, only ran me into the ground.
Where I live, you can't walk anywhere without walking up down or along a slope. You can't do anything without carrying loads. Everything is manual.
I worked my way up to 8000 a day with that willpower, good days and bad (but not crashes when my body simply wouldn't).
Someone had to tell me that 6000 is more normal for a mild case, that office workers only just manage this. What a relief! When I cut down my steps I could finally read my emails again. I could finally live through a day without disabling pain. I could stand my husband walking around without wondering why he tortured me.
Now I do try to keep my physical activity up and sacrifice the mental, in hopes that I can not entirely lose condition and get all the health risks I gather that entails. But some days I splurge and live online, for sanity.
So, I may be reducing my steps further, allowing myself a little more brain in exchange for another loss of fitness. 2000 seems more naturally sustainable (except that it's hard around here to do only that if I want to eat and pee). My world was designed around fit and active.
My fear is that I may be higher functioning now becasue my previous high level of fitness means that things don't count as exertion at too low a level. I've lost condition surprisingly slowly. I am not what a doctor would call deconditioned if you test me. Not at all on the first day. The second day is an entirely different thing.
I know/think/fear/believe that every increment I drop back, is not coming back. But I'm starting to think that the less I do the more I can do. Bank more energy and get out of debt. Opposite of my healthy constitution.
Gingergrrl
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I guess this is why pedometers do not work for me. How do others count their steps inside of their home (or does everyone walk at a fast pace inside)? I can walk from my bed to the bathroom or from my couch to the kitchen, etc, and each of these is about 20 steps so if I do this five times in a day, I have hit 100 steps yet NOTHING registers on pedometer whatsoever like I am not alive!
I might just choose a day and record them in my head and then write in a notebook. It is so few steps that I think it is do-able and then I will learn how many I am really walking inside my apt on the average day. My guess is 200 steps but I might be way off.
Edit: I move around my apt all day long, and even go downstairs to the lobby to get the mail, but it is all with a motorized wheelchair. However, when I go outside on my patio with my dog, this is all standing/walking without wheelchair and we go outside on patio at least 4-5x per day. So if I were to count the steps on the patio, I really may be doing more total daily steps than I think (but divided into very small increments like 10 steps at a time). So I may have an additional 50 steps per day that I am not counting. I am going to try your idea @TigerLilea b/c am really curious and this is the only true way to find out. Thank you for that!
This is a really interesting thread. I have no idea how much I do, step-wise, in a day but this is inspiring me to find out, especially as I am very lacking in discipline and do quite a lot of roller-coastering......
I have always had a strong impression that if I don't push my limits, they gradually expand - very very very slowly though, so patience and self-discipline are pre-requisites. Of course, I might be wrong...........just stubbornly optimistic instead
...I have always had a strong impression that if I don't push my limits, they gradually expand - very very very slowly though, so patience and self-discipline are pre-requisites. Of course, I might be wrong...........just stubbornly optimistic instead
My samsung phone counts my steps and keeps a history going back to when I got it. From that I see I take between 2000 to 3000 steps most days. It used to give me a trophy if I walked more than 6000 in a day which I very rarely did (and usually suffered for it later) but I just noticed it is now set at 10000 which I never do so no more trophies for me!
Jenny TipsforME
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I put 500-1000. I sometimes go over 1000 but it usually leads to PEM. On a bad it might be 200 but that's basically just going to the bathroom (or having chunks of the day I can't walk a single step). In a mild phase about 10 years ago I could do 8000 on work days but I haven't consistently been measuring all that time. Also having the fitness to do 8000 didn't make me well
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Well this question is complicated
I try to keep the day to day at 2,000 is where I feel the best.
I can do 5,000 when I have to go to the office and will need a nap at noon and be ok no PEM.
I can do 10,000 steps on travel or special days. Will get PEM and need some time to recover but I can do it.
I get symptomatic after the mile mark.
I try to keep the day to day at 2,000 is where I feel the best.
I can do 5,000 when I have to go to the office and will need a nap at noon and be ok no PEM.
I can do 10,000 steps on travel or special days. Will get PEM and need some time to recover but I can do it.
I get symptomatic after the mile mark.
Gingergrrl
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I am attempting to count my steps today (in my head) and writing them down on a piece of paper to tally at the end of the day. So far I have very small increments (like 4, 9, etc) except for when I went out on patio, it was 28 steps. So I literally have no idea what my total number will be but I know it will be more accurate than any pedometer I have tried! Will report back tonight...