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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ME/CFS Fitbit Community

sparklehoof

Senior Member
Messages
186
Location
North Carolina
Hey ya'll,

Would anyone be interested in starting an ME/CFS Fitbit Community with me on the Fitbit app/site? (I don't know how to do this, but I'm willing to find out)

I'm struggling with exercise and want to find others that have a Fitbit who are at a similar level. On the MEA Disability Rating Scale, over the last 18 years I roughly fall into the 70%-90% DISABLED range with some differences.

I have never been able to maintain a steady or graded exercise regimen.
My best: Usually once or twice per month, on a good hour of a good day, I can walk for 10 min. on a treadmill, lift light weights for 10 min. w/ rest breaks.
My worst: Laying in bed in the dark, with earplugs, with flulike symptoms+ other symptoms too sick to watch a movie or tv show, read, play solitaire or listen to a podcast. Breathing feels like a sport.

The advantages of a Fitbit community for us:
1.) Use our Fitbits so that we don't have to exert energy manually recording our exercise
2.) If our goals are below the lowest pre-set Fitbit goals, we can share them with one another instead of feeling alone and unsuccessful.
3.) Because our day to day health changes, if we're all at about the same level of fitness, we'll be reminded that we're not alone if some days we only reach 25 steps.
4.) We can support one another in ways to stay strong mentally.

Who's with me?

Adrian
 

tudiemoore

Senior Member
Messages
161
Location
Southeast U.S.
I would be interested but first I have to learn to use my Fitbit!

Also, definition of exercise? The word, as it seems most often to be used, makes me shudder!
I don't dare go an aerobics class, go for a walk longer than 10 minutes, get on my rebounder, think of riding my bike off to the races!
Tried a Zumba class. Instructor said, "Just do as much as you can!" But I couldn't do anything--left breathless, wondering if I would make it to the car. Crossed Zumba off the list...

I am currently wanting to try stretching, simple yoga, such as learning to relax and breathe properly, and/or some of the "Bedtop" programs and activities.

I need encouragement for follow-through with any project or program but believe in the value of "The Group" for support and encouragement.
Ok, here we go!
 
Messages
50
I am using Fitbit in entirely different way: to watch that I don't do too many steps per day. It works better this way, at least for me.

I would be Moderate to Mild on MEA scale.
I work at computer for 6 hours per day, BUT to be able to do it, I don't cook or do any housework except light dish washing, I don't shop, I don't walk more than is necessary, I don't have visitors, I mostly just lie on weekends. My daily steps are capped at 3800 on my device (FitBit measures a bit more, maybe 4500 steps).

Here's the important bit:
The only reason I am able to work is because I don't go over 3800 steps per day. If I do, within a week I won't be able to focus and brain fog will return. It seems that brain fog is the earliest symptom for me that tells me I screwed up. If I don't listen to it, my physical ability suffers next and I end up with flu-like aches, dizziness, even small exertion gets my heart racing etc.

Your situation is different, of course. But are you sure it's a good idea to use FitBit to more, not less?
 

soti

Senior Member
Messages
109
Happy, I'm quite similar! And I use a fitbit. Would gladly join a group.
 

tudiemoore

Senior Member
Messages
161
Location
Southeast U.S.
Thank you for the idea! I guess I have been such a non-exerciser for so long that I I haven't thought about variations of "no pain, no gain". And the Fitbit is an entirely new creature!

Actually, I think I gave that no-pain thing too lightly--I just want to start doing something along the lines of using my body more.

I have had too many wipe-outs, extending myself physically, especially the last year and a half or so to not have fear of this.

Feeling a bit better so I pushed--you know how that goes--and along with "but you don't look sick").

Thanks again--
 
Messages
6
Location
UK
Hi, I'm from the UK. I'm 66 and I've had M.E. for 36 years. I am classed as moderate/severe and have just bought a Fitbit Charge 2. I'm only 2 days in so still a little confused but am already learning some things ... I live alone so simple tasks like laundry, food prep. etc still have to be done. Just today I realised if I sat down instead of standing to fold the bedding I'd washed that my HR lowered. I would be really happy to have people to walk this road with ( metaphorically speaking - it's a long time since I walked down any road ;)
 
Messages
102
For me, using a fitbit was more about learning my heart rate and how to stay under a specific level than actual volume of steps. Your heart rate and your heart rate viability are much better measures of total body output than just steps.

A body not accustomed to movement or exertion can have a very different reaction than someone with pots for example. Now that I am recovered, walking up several flights of stairs briskly only results in a HR of about 90-100. During the beginning of my recovery my HR was 130+ on the same stairs going slowly.

My greatest benefit was learning what it felt like to stay under 120, then 110, then 100...etc. I used this information to then stay under these levels for a long time.
 

ChrisD

Senior Member
Messages
472
Location
East Sussex
I just got a Charge 2 at Christmas and have been using it throughout January, I find it hard to sleep in so haven't managed to get a lot of sleep data (which is what I really wanted) but it's been incredibly useful for Steps and monitoring HR as @matt321 says. I've also noticed that my HR is dropping with steady improvement. Generally I am sitting for most of the day, except for when I make food or grab a drink, then I have energy for 30mins to one hour to go out and walk to a shop or walk the dog, in this time I can achieve 3,500 steps typically. I think I need to learn to pace more and maybe split that step count into two....

I have just tried to join your group @sparklehoof but cannot find it on the fitbit app on my iphone!?
 
Messages
6
Location
UK
Can anyone give me an idea how to set up the Charge 2 dashboard so that it registers 92 as my AT?

Throat infection knocked me back and can't even think ...
 
Messages
6
Location
UK
For me, using a fitbit was more about learning my heart rate and how to stay under a specific level than actual volume of steps. Your heart rate and your heart rate viability are much better measures of total body output than just steps.

A body not accustomed to movement or exertion can have a very different reaction than someone with pots for example. Now that I am recovered, walking up several flights of stairs briskly only results in a HR of about 90-100. During the beginning of my recovery my HR was 130+ on the same stairs going slowly.

My greatest benefit was learning what it felt like to stay under 120, then 110, then 100...etc. I used this information to then stay under these levels for a long time.

That;s encouraging! Slowly, slowly... I'm only a week in... even on a day like today when I'm feeling rough I still have to get out of bed to function as I live alone and that sends my HR soaring. I read an article that said 2 mins is max. recommended activity over AT at one time - it takes me longer than that to get to the kitchen