New and need advice for getting started (have CFS)

[JoJoToo]

Hi all,

I just bought my first fitbit! Can't wait to get started. But I have CFS after being extremely sick some years ago. I haven't done ANYthing for years! Literally! 

Is there a recommended program for people diagnosed with CFS or somewhere I can find recommendations for getting started? I want to avoid that post-exertional malaise that knocks us ME/CFS people out for three or more days at a time. It's just not fun at all. 

Hope to get some replies, especially from some ME/CFS people out there who have had successes. TIA!

[Shallot]

hi - I'm new too and dealing w long covid for 13 months, including crashes of post-exertional malaise that I am not good at predicting or avoiding. i don't know enough to have any tips - just reaching out to say i'm with you and rooting for you. I've mostly been using fitbit to track heart rate but have just started trying to get walking more. Just a very little bit at a time so far, like around the block once or twice, after spending past year mostly in bed/couch. How are you doing so far? 

[JoJoToo]

Hi Shallot, so nice to "meet" you!

Sorry about the long-hauler thing, I've heard it's really difficult. My CFS
is part of having had BII. I think the worst part of it is trying to
understand how much to do and how much not to do. The PEM doesn't always
hit immediately, it might be the next day or day and a half later. But when
it hits, oh man! And it can take a while to come out of it too. None of
this, "Oh, I'll just rest up a bit and try again tomorrow" stuff!

I haven't started my Fitbit routine yet. My tracker should arrive in the
next day or so. I thought I'd reach out to the community to see if anyone
has any advice. I've had a lot of starts and stops over the last 5 years
(since the CFS hit me), and this time, I'd really like to avoid the stops
so I can maybe make some progress.

Maybe by sharing information and supporting each other, we can find the way
together?

Would love to hear more from you! It's great to know I'm not alone! 💟

[Shallot]

hi JoJo Too - That would be great 🙂 

I'm sorry you're dealing w the CFS - 5 years is a really long time. I hope the BII is resolved? I don't know that much about it but it sounds hard. 

I'm definitely not good at knowing when to stop doing. I'm always surprised when PEM hits me in the face, even though by now I should know better. Am hoping that being more conscious about limits will help.

Here's to good days, followed by even more good days!  💟

[JoJoToo]

Yes, absolutely! To good days! 👍

I really look forward to exchanging experiences with you and hopefully,
others will join in too. 🤞

[Shallot]

hi JoJoToo : how are you doing/feeling? Have you tried out your fitbit? 

sending you happy-pacing vibes 🙂

[JoJoToo]

Hi! Thanks for asking! Yes, and I do enjoy the features, but I'm finding
that some things don't record accurately. 😞 For example, my fitbit
records steps while I'm sleeping or drinking coffee while sitting in a
chair!!!

[Shallot]

Am so glad you're liking the features 🙂 but that inaccurate tracking is weird - could it maybe have something to do with your wrist moving while you're sleeping or drinking coffee? Picking up random movements like that doesn't seem like smart engineering though. Kind of similar - I sit on a balance ball and it records each bounce as a step (which honestly sometimes i use to get "steps" in on PEM days, but still surprised it doesn't realize the difference bw walking and tiny bounces). Do you know whether you have it set to your dominant or non-dominant hand - that might make a difference for coffee-drinking at least?

Also - I don't know if you've got heart rate issues, but I've noticed that it cheers me for earning active zone minutes when it's really just my heart going to 120 for no reason when i'm lying on the couch etc. Kinda wish there was a "disregard wonky pulse" setting 🙂

Besides the non-steps, do you like the sleep rating feature? 

[JoJoToo]

Yes, it's set to the correct hand (non-dom).

When I called in and spoke to an "advocate," I was asked to completely
clear all user data and then upgrade the firmware, then wear the fitbit
nonstop. I did. Looks like that did the trick! It now appears to be working
properly and I'm really beginning to enjoy it.

The biggest thing I've learned so far (and this is super relevant to CFS
issues) is that I have been overdoing things in spurt fashion. Not good
when you have CFS! The feedback I'm getting from my fitbit is invaluable.

BTW, I found that the people who work the online chat are not really
knowledgeable and, at least in my case, only added to the frustration that
occurs when a product doesn't function properly. Unfortunate. I hope Fitbit
will upgrade their training! The phone people are fantastic.

[SunsetRunner]

I like your attitude, @JoJoToo ! We laugh or we cry with our health issues. It sounds like you are choosing to make the most of life! When I get too many steps, I just say thanks! I have serious issues with my lungs and here are a couple tricks I’ve learned along the way. I use my Fitbit mainly for the way it motivates me. 

• I can’t do much walking so I purchased a Cubii under table elliptical. I also use a recumbent CrossFit. Putting my Fitbit in my sock or around my ankle, it counts revolutions as steps. This helps me to reach my goals and keeps me as active as possible. Side note - this will skew your heart rate info so you need to be clear on what you want from the Fitbit.
• I also change my goals, depending on what is going on health-wise. After surgery or a difficult day, I lower the goal for several days so that I still get the celebrations! Yay for me! Doing the best I can!

Keep on keeping on!

[JoJoToo]

Carol-B, what a great attitude YOU have! Thanks for sharing this, you've
got some really great ways of making it work. I love the changing goals
idea. It seems a bit silly, but I do cheer myself when those little
celebrations go off on my wrist. I totally understand your using the fitbit
for motivation. I'm surprised at how well that's working for me too!

Fingers crossed for you not having any more surgeries, and for all health
issues being kept under control for both (and all) of us.

[DeepDive]

Hi Shallot,

I just happened to run into your post from a year ago - wondering how you’re doing by now in managing Long Covid and CFS… Did your Fitbit help you succeed in any way?

I’m suffering with CFS as part of Long Covid for 3 months now, and just got my first Fitbit (Inspire 2) to help me monitor my heart rate and avoid PEM. Would be happy to hear how things are going on your end…if you’d like to share…

[JoJoToo]

Oh, that long COVID thing is a real bear.

My fitbit reminds me to move around every hour and that's a good thing. I
just wish we could modify it to be more than 250 steps 10 minutes before
the hour, or even 15 minutes before the hour. Or every ½ hour! I'm finding
that getting those steps in doesn't trigger the PEM, which for us, is the
most important thing.

I wish you the best of luck, and hope that long covid thing goes away.
Nobody needs that! ❤️

[MakeItHome]

Hi, another new one with long Covid here. I don’t know anyone else who has it right now so it’s good to know I’m not alone either. Any new Fitbit advice would be helpful! 

[SaraStJohn]

Hi @MakeItHome and others. I just started a "Long Haulers Recovery" FitBit group for this very reason. All are welcome (Long Covid, CFS/ME, fibromyalgia, etc.) Since it's a closed group, we first have to be friends for me to add you to it. Then anyone who's in the group can invite others by first making them a friend. It's odd, but that's how Gmail started, too.