Fitbit: ultra-pedometer for auto-tracking activity

[bertiedog]

I have just purchased the Fitbit One and have been wearing it for just over 2 days. I find it encourages me to get up and do a bit if I have been resting for a while. Have to say I was very pleased to see I have done around 5600 steps both days and even had 9 minutes of being "very active" when I was walking my dog.

Don't expect it to be so good every day though especially if I have a migraine when my energy nosedives.

Think I could get a bit obsessive about it.

Pam

 

[Keela Too]

Thanks - that's useful to know.

Just thinking here Sasha - the Fitbit can't actually tell the difference between sleep and "being still". It is only a movement sensor.

 

[Keela Too]

I have just purchased the Fitbit One and have been wearing it for just over 2 days. I find it encourages me to get up and do a bit if I have been resting for a while. Have to say I was very pleased to see I have done around 5600 steps both days and even had 9 minutes of being "very active" when I was walking my dog.

Don't expect it to be so good every day though especially if I have a migraine when my energy nosedives.

Think I could get a bit obsessive about it.

Pam

Be careful not to let it encourage you to do more. I have found that doing only a small bit extra over a period of several days can cause a flare - and some flares do not allow me to return to previous norms afterwards.

Perhaps I watch for patterns more than most .... I don't check it much throughout the day - maybe just at meal times. However it is the patterns over time that I think are important.

I've taken the scale and dates off this chart, but the comparisons over time are useful I think. The blue columns are my daily totals. The yellow line - 5 day rolling average. Red - 30 day rolling. Purple - 100 day. I think it is clear that doing extra causes problems afterwards - not at once but several days later.

Sadly as you can see I cannot yet try to build upwards.

 

[bertiedog]

Be careful not to let it encourage you to do more. I have found that doing only a small bit extra over a period of several days can cause a flare - and some flares do not allow me to return to previous norms afterwards.

Perhaps I watch for patterns more than most .... I don't check it much throughout the day - maybe just at meal times. However it is the patterns over time that I think are important.

I've taken the scale and dates off this chart, but the comparisons over time are useful I think. The blue columns are my daily totals. The yellow line - 5 day rolling average. Red - 30 day rolling. Purple - 100 day. I think it is clear that doing extra causes problems afterwards - not at once but several days later.

Sadly as you can see I cannot yet try to build upwards.

View attachment 5658

I am definitely only having normal days for me, haven't pushed myself apart from this afternoon when I get stuck in the park cos my dog kept running around like a mad thing. There were far too many people and dogs there so I couldn't even sit down because all the seats were taken. My body was screaming at me to rest so I won't go to that park again for a while. Soon the weather will change and it will be much quieter there.

Thankfully I have an oxygen concentrator which makes a huge difference to what I can do. After an occasion like this afternoon the first thing I do when home, after eating something is to use my concentrator to give me back some energy. No question when I am without it I feel terrible and have very little energy.

I find that I do about the same every day but not sure on the 2 days I do some voluntary work. It will be interesting to see if it is actually less on those days because I don't walk my dog in the afternoons.

Pam

 

[Keela Too]

The dogs are my weakness too. I can't walk them as such, but use a mobility scooter to "walk" them.

Do you have the oxygen for ME or for another condition on top of ME? Do you think it helps the ME angle? Right now I'm struggling a bit.

 

[Little Bluestem]

Keela Too, Cool graph. Do you have software that does it for you. I hate to think of calculating all of those rolling averages by hand(held calculator). I hope that you find a way to get that purple line headed upward.

 

[bertiedog]

The dogs are my weakness too. I can't walk them as such, but use a mobility scooter to "walk" them.

Do you have the oxygen for ME or for another condition on top of ME? Do you think it helps the ME angle? Right now I'm struggling a bit.

Yes the oxygen is for the ME. I had a specific test done last year at the Breakspear here in the UK on my autonomic nervous system and it showed I had less than 50% of the normal amount of oxygen in my cells and slightly too high carbon dioxide.

At first I hired one for a month but when I got a fantastic response right from the first time I used it I decided it was far better to purchase one myself. It cost me around £650 but is worth every penny. I use it every day for at least 30 minutes after breakfast, lunch and dinner. I definitely can push myself a little more because of the concentrator.

One other important thing I have noticed is that my immune system is so much stronger. I used to pick up every bug going around but this past year has been the best I have had in more than 20 years and it has to be to do with concentrator.

Pam

 

[Keela Too]

Keela Too, Cool graph. Do you have software that does it for you. I hate to think of calculating all of those rolling averages by hand(held calculator). I hope that you find a way to get that purple line headed upward.

I just made and Excel spreadsheet and add "yesterday's steps" each morning.

 

[Keela Too]

Yes the oxygen is for the ME. ......
Pam

That is interesting. So it helps with recovery times? Also to allow you to do more? Perhaps I'll take a look at Breakspear....

I am just so frustrated at the moment, as I walk only about 800 steps each day, which is about 250 metres. That is spread through out the whole day now, not all at once! And as you see I'm sliding rather than improving.

And keeping my activity levels this low is very tough. I love to be out and about doing things.....

 

[bertiedog]

Yes it is really tough when one wants to do things but the body isn't up to it.

I should also add that the other massive benefit I got personally was treating my adrenals and thyroid. Since 2002 I have needed a steroid and dessicated thyroid. Without them I wouldn't be able to do anything apart from lie around and feel dreadful.

Its been a really long journey but at least I feel as if I have a life in which I can do some things.

Pam

 

[Smith]

I have a Fitbit and would definitely recommend it for anyone with MECFS. It helps to establish a fairly accurate baseline and stick to it.

However, a word of caution....setting limits and obsessively monitoring them can be counter productive!

For example, if I set a limit of 2000 steps per day and I look at my Fitbit one day at 4p.m and see I've done 2800 steps already it sends a kind of panic signal to the brain....something along the lines of "oh shit, I've overdone it again and this means I am gong to crash!". When in fact I will probably be fine. Indeed the panic thought about overdoing it is actually MORE HARMFUL to me than doing the extra 800 steps!

It is very difficult to stop this stress trigger reponse about overdoing it, because it becomes a deeply engrained, subconscious reaction. These stressful, panic thoughts are occurring constantly throughout the day. It's even worse if you start monitoring your sleep! As anyone knows, the more you think about sleep/ insomnia the worse it gets!

It all comes back to this pacing thing.....For me, pacing is a very important thing to do early in the illness to stop you sliding deeper into disability. It makes sense to fix some activity limits and stay within them, as the best way to help the body to heal naturally.
However, setting fixed limits is also a good way of trapping yourself in this illness. E.g. If you start to realize that making lunch is too exhausting and you need someone else to do it....over time this creates an unhelpful association with the activity of making lunch and crashing. You start to think that if you make lunch you will always crash and if you don't make lunch you'll be alright.

Unfortunately there isn't a simple answer to all this. It's a very fine line.

As I see it....you have to pace and a Fitbit helps. But don't get trapped by it. If you stop an activity for a while, see if you can pick it up again, or do it in a different way.

 

[Valentijn]

However, setting fixed limits is also a good way of trapping yourself in this illness. E.g. If you start to realize that making lunch is too exhausting and you need someone else to do it....over time this creates an unhelpful association with the activity of making lunch and crashing. You start to think that if you make lunch you will always crash and if you don't make lunch you'll be alright.

I've never heard of any ME patient having this problem. I also haven't heard of any research demonstrating that such an irrational fear of activity ever exists.

 

[Smith]

I've never heard of any ME patient having this problem. I also haven't heard of any research demonstrating that such an irrational fear of activity ever exists.

Well, I have this problem! Not only with making lunch but with many things! E.g. I was bed bound for many months and couldn't climb the stairs. Every time I tried to climb stairs my legs would be in agony and I would have a flare. I kept trying, but it kept happening.
In the end I figured I just can't climb the stairs any more ...and I got a stairlift.
I think I actually became a bit afraid of the stairs, like if I climbed them I would always crash again. This was a perfectly rational fear, of course.
But then I decided one day to climb one stair per day. Then a week later, two stairs per day. And so on....I can now climb up and down all the stairs once per day, even on a bad day.

By the way, please understand, I am not talking about irrational fears here. I am talking about very rational fears! It was very rational for me not to climb the stairs because each time I did it I had a flare. But it was also very rational for me to wonder if my limits might have changed over time or whether a more gentle approach to climbing the stairs might help....

The key point here is that our capacities change over time, and by sticking rigidly to our pacing limits we might never find out if we could do more.

 

[Keela Too]

Can't say I've ever had a big fear response to doing a bit extra... usually it's more of an "Oh bummer! I'd better slow up - and just as I was having such fun!"

Sure it's precautionary, but I don't need to go almost 1/3 above my norms to test my boundaries... if I'm going to do that it will be a much much more low key increase.... and believe me when this bleugh lets up there will be NO residual fear there! I will have NO panic moments about sensibly adding small increments in a managed way.

@Smith I really don't agree with your notion that we "obsessively" monitor, and panic when we see numbers going high. For me it is a very useful tool, much like using a speedo in your car in built up areas... You just stick to it, because that is the way it is... no panic, no fear, no nonsense.

And I'll continue to use it when the speed limit lifts, but again when I approach the limit I'll back off. No panic, no stress, just confidence that I am staying within limits that are manageable...

Why do you imagine we will be rigid with our limits? I can gently ascertain where they are, and only keep low because that's where my body keeps reminding me I must be! But because I am cautious about how much I ever overstep my current norm, so I don't have big crashes, only wee reminders! That's the plan....

No wee reminders? -- then of course I'll relax my step count upwards. But right now about 600 is my max, and around 500 my average over the last month.... That's understanding not panic, or rigidity! And certainly not obsessive in my view!

 

[Keela Too]

Just noticed my previous post in this thread... Sept 2013.. and I was averaging 800 steps daily. That was down considerably from the 2000 average I had when I first started monitoring in Nov 2012 (although that was unsustainable I know that now)

Also, I'd already had bigger losses since my illness onset in March 2012. All down to doing too much, and not believing how inactive I needed to be. (I was the gal who did a 2 day maracycle when my fourth child was only a year old... so quite used to getting up and doing stuff!)

Anyway in Sept 2013 at the time of that last post, I was starting to stabilise. Now I managed to keep that 800 steps per day level pretty much til this time last year when I got a rather nasty virus that stepped me down another level - to about to where I am now.... and I've roughly maintained that now for a whole year.

I see that as an achievement... I stopped the slide!

I'd love to increase, but frankly I know that just now it's not possible. And frankly I will continue to watch my steps carefully because I know I don't want to risk further losses.... simple.

 

[bertiedog]

I lost 2 of the Fitbits, they fell off my waist band when in the park so I gave up on them and last September ordered the Garmin Viofit and thankfully haven't lost that one at all. Its just like a watch.

It has really helped to confirm that my Cowden treatment has been very helpful for me having gone from around 5000 steps then to usually at least 8500 unless I have a virus or infection. I have even done 12500 steps one day without any ill effects. At the moment I have got one of the nasty throat viruses I get so I am well down to around 6500 till I get better.

I do think these devices are excellent if one is improving but otherwise they might be depressing.

Pam

 

[Kati]

I have a Fitbit and would definitely recommend it for anyone with MECFS. It helps to establish a fairly accurate baseline and stick to it.

However, a word of caution....setting limits and obsessively monitoring them can be counter productive!

For example, if I set a limit of 2000 steps per day and I look at my Fitbit one day at 4p.m and see I've done 2800 steps already it sends a kind of panic signal to the brain....something along the lines of "oh shit, I've overdone it again and this means I am gong to crash!". When in fact I will probably be fine. Indeed the panic thought about overdoing it is actually MORE HARMFUL to me than doing the extra 800 steps!

It is very difficult to stop this stress trigger reponse about overdoing it, because it becomes a deeply engrained, subconscious reaction. These stressful, panic thoughts are occurring constantly throughout the day. It's even worse if you start monitoring your sleep! As anyone knows, the more you think about sleep/ insomnia the worse it gets!

It all comes back to this pacing thing.....For me, pacing is a very important thing to do early in the illness to stop you sliding deeper into disability. It makes sense to fix some activity limits and stay within them, as the best way to help the body to heal naturally.
However, setting fixed limits is also a good way of trapping yourself in this illness. E.g. If you start to realize that making lunch is too exhausting and you need someone else to do it....over time this creates an unhelpful association with the activity of making lunch and crashing. You start to think that if you make lunch you will always crash and if you don't make lunch you'll be alright.

Unfortunately there isn't a simple answer to all this. It's a very fine line.

As I see it....you have to pace and a Fitbit helps. But don't get trapped by it. If you stop an activity for a while, see if you can pick it up again, or do it in a different way.

i have a fit bit and while I have used it consistently for 6months I took a hiatus for a while (skin reaction). i now Have decided I would use it 1week every month to see what it's saying.

Essentially, My activities are directed by how I feel and not by what the fitbit says.

 

[Little Bluestem]

I had a specific test done last year at the Breakspear here in the UK on my autonomic nervous system and it showed I had less than 50% of the normal amount of oxygen in my cells and slightly too high carbon dioxide.

I was reading the older posts and this caught my attention. Do you know what kind of test was done? I use a pulse oximeter to check my blood oxygen. I have read that we can have tissue oxygen that is lower that our blood oxygen.

 

[Little Bluestem]

My activities are directed by how I feel and not by what the fitbit says.

Unfortunately, how I feel is not a good guide to what I can do. I feel like I can do a lot more than I can.

When I first got a pulse oximeter, I was amazed at how quickly and how high my heart rate went up. I did then understand why I would feel so wiped out after I thought I had not done much. I plan to get an anaerobic threshold test done and use a heart-rate monitor.

I can see how a pedometer could also be useful. If you go back to bertiedog’s Sep 27, 2013 post, you can see how she used a graph to stabilize her activity level and get rid of the push-crash cycles.

ETA: I am not saying that going by how you feel is not good if it works for you. Just that it does not work for all of us.