01-20-2014 12:09
01-20-2014 12:09
I have severe ME and Fibromyalgia, I have been mainly housebound and sometimes bedbound for the last 5 years. I have bought my fitbit to encourage movement and improve pain levels by trying to improve my muscle health. I have to start very slowly and am working with Oxford Pain clinic to rehabilitate my body. I will never be "normal" but I hope to be able to control my illness and do the best I can to gain some strength back.
Is anyone else using their fitbit in a similar way
02-03-2019 08:03
02-03-2019 08:03
02-05-2019 09:26 - edited 02-05-2019 09:29
02-05-2019 09:26 - edited 02-05-2019 09:29
Yes, I have CFS, but that (for me) is generally just exhausting rather than painful. I also have a ripped planter plate in my foot (which does hurt), and a 'slipped disk'.
I know CFS is different to fibromyalgia and we may have different needs, but can still support each other.
Just seen how old the first post was! Are there now any CFS or related groups? I am a newbee to Fitbit.
02-09-2019 16:45 - edited 02-09-2019 16:47
02-09-2019 16:45 - edited 02-09-2019 16:47
I have fibromyalgia too and currently trying to lose weight but it’s hard to find ways to do it that aren’t too hard on my body
02-20-2019 03:36
02-20-2019 03:36
It's been a while I've been observing this thread and thinking whether I should contribute. My illness doesn't look so severe however, it's a real pain in a**. This story has at least good ending ( or has it...? 😛 ).
All my life I suffered a severe case of asthma. At age of 8 I, speaking shortly, died... for a few minutes only, but it counts 😉 I simply suffocated during an asthma attack. I was kept on medicines that could barely control my disease and doctors used to describe my case as "severe". For many years I was actually discouraged from any physical activity as it was considered being one of the triggers ( exercise-induced asthma ). Over years, I just used to it, I defined "asthma" as my "normal". Never knew any other life. Something there's no escape from. My lifestyle didn't help either. Eating and drinking habits did more damage. Hospitals were almost my second home. 2 years ago I started the process of turning my life around and it was then when I bought my first ever fitness tracker. I chose Fitbit Charge 2. Indeed, it was a huge motivation and kilograms went down and I started coming back to shape. Tracking calories, exercises, comparing results, and trying to make yet another step forward. That worked very well! It made me care. For many years I didn't do a thing to help myself. Now, it was time. I reviewed all my asthma medicines and noticed that during past years the views on my illness drastically changed. For example, scientists are not quite sure whether such a thing like "exercise-induced asthma" even exists. Doctors started telling me that engaging in physical activity is actually a good thing for me ( unlike 20 years ago 😉 ). I should keep doing what I was doing.
Ok, lets fast forward. Now, 2019. I sometimes don't even remember I have asthma. The symptoms are simply not there. True, I'm on medication but this time it is the right medication. I don't even carry my blue inhaler ( the 'emergency' inhaler ) with me ( in the past, I've been using it a lot, 10-20 times a day, this resulted in some permanent changes in my lungs ). There is no such need now. Recently, when I went to the GP to get a referral for physiotherapy for my knee ( yup, runner's knee got me ), he said I could be an advertisement for a healthy lifestyle and benefits of exercising ( that really boosted my ego 😄 ). I know that my asthma is still there and one wrong step and it will reveal itself but for now I things are the way I want them to be. I am in control, not my disease. I realize that not every illness can be so much suppressed and I can consider myself lucky. Despite all my ranting here, on Ionic forum, Fitbit takes quite a credit for my change as first few months with the Charge 2 device where crucial and I'm sure, the tracker played a major role in keeping me going until I could go by myself 🙂
02-21-2019 10:49
02-21-2019 10:49
02-21-2019 10:54
02-21-2019 10:54
There's a group called Spoonies you need an invite though. Send me a PM and I'll try to invite. I don't think I've ever invited sometime to a group before. 💕
03-18-2019 06:36
03-18-2019 06:36
Hello any one out there who can put me through on how to use Fitbit. Add me up if you have any idea . thank you
04-23-2019 01:45
04-23-2019 01:45
I figured out a nifty thing! I have been wanting to have a reminder of how I'm doing using my Fitbit data, to help with pacing myself. I've got severe ME/CFS, amongst other things, and despite having it for 22 years, I still struggle with pacing.
You can do this using an app that colours your status bar in segments.
Work out a chart in a spreadsheet app for how you want to grade things, and put a screenshot of it on your home screen for easy reference (there are apps for doing that). I'm using red for bad, blue for good.
I am using two segments for sleep, with the second one updated if I have a nap. Too little sleep is obviously bad, but so is too much sleep past a certain point.
Then one for the previous day's steps. I add 500 steps in the direction of red if I overdid it in other ways (didn't drink nearly enough and/or too many "active hours" yesterday, got to 1000 steps before noon today).
Then one for how many minutes I spent in the peak heart rate zone yesterday. You may need to fiddle around in the Fitbit settings to change how it calculates the HR zones, as the ones it suggested based on my age were far too high for my needs. Tachycardia is a key warning sign with ME/CFS.
Then one for mood, which I'll use for pain or what have you as well. It tells you how little pain I've been getting recently that I completely forgot that pain was a thing worth tracking until reading a thread on the Fitbit forums.
You can see today's bar at the top of the screenshot with the chart. The next screenshot is how it looks in the mobile Chrome browser.
For some reason, that insists on keeping the status bar black, so I changed the height of the status bar and get a bit of the coloured strip showing underneath. It also shows my Fitbit dashboard, which I keep open in the app so that I can check it quickly for this, including being able to see how many minutes I spent in the peak HR zone.
It's only been three days, but I like it. Playing with colours is fun, and I have a quick guideline on how I've been and how far I should take it easy today, or whether it's safe to do more, and how urgently I need to rest. This is on an 8" tablet, which is what I spend most of my day pottering around on.
I'm also running a similar status bar on my phone, which shows the steps for the last five days, shown in the third screenshot.
Overexertion flares often hit after a delay that can be several days, so this should help avoid that, and also help me see patterns.
I'm not sure whether it will be a problem using the same colours for "too much" or "too little", but I suspect not. Whether I had a bad day because I was racing around like my tail was on fire, or because I could barely get out of bed, I still need to rest up afterwards.
04-26-2019 02:13
04-26-2019 02:13
Is there a group, then? I'd love to join.
I'm continuing my system using a coloured statusbar. Today I have one ranging from yellow to magenta, which means I need to rest. I am sulky about this. I am also hurting all over, and really should rest before I get worse. I've created individual timers for my quilting, ranging from 10 min to 30 min, and colour coded the same way, so that I can quilt in reasonable amounts depending on how I am doing that day. Patterns are starting to show up, and I think this will help with pacing. I'm not allowed any tiring activity (quilting or board games, not both) today until I've had a nap!
04-26-2019 07:57
04-26-2019 07:57
04-27-2019 02:00
04-27-2019 02:00
It doesn't track pain, but there's nothing stopping you logging your pain and activity levels together in a spreadsheet to see if there are patterns. I'm still tweaking how I do this, but it's working, I think. Yesterday it encouraged me to rest, meditate several times, and only quilt in ten-minute bursts and paying attention to when I needed to stop. Today there are two blue sections on the status bar, because I managed to avoid tachycardia or "active hours", and I am pleased with myself!
I'm now doing the status bar segments like this:
Nights sleep - sleep including today's nap - yesterday's steps - yesterday's active hours - number of minutes in peak heart rate zone yesterday - today's mood/pain.
Active hours turn out to be crucial, although the app never shows them and I have to check the dashboard.
It's helping me work out when I need to rest, and how much I can do of an activity. After 22 years of ME, I still have terrible trouble pacing, and having likely undiagnosed ADHD makes it a lot harder. So I'm hopeful about this.
06-02-2019 21:34 - edited 12-21-2020 19:58
06-02-2019 21:34 - edited 12-21-2020 19:58
I already had my Fitbit but had never used it seriously. I felt this was the time to use it, when my weight increased. So I started setting goals and made sure I reached my goals everyday. Started with 5000 steps a day, then 6000, and then 10000, now I have goal of 12000 steps. I make sure I reach my gaols at least 6 days a week.
I really have to give credit to Fitbit and Fitbit community.
I still have long way to go. I hope to stay fit and stay healthy.
Thanks!
09-07-2019 18:43
09-07-2019 18:43
I love your post! Great info!
09-07-2019 20:24
09-07-2019 20:24
I used to track pain by logging as food e.g. Pain in left shoulder, Ache behind knee etc. In my case my aches and pains were related to what I ate so it was good to analyse the two 🙂
10-07-2019 23:50
11-24-2019 14:24
11-24-2019 14:24
I'm very interested in joining or starting a CFS group. I've had it for six years and just bought a Fitbit to stop me crashing.
11-24-2019 16:05
11-24-2019 16:05
12-15-2019 16:03
12-15-2019 16:03
Hi snowdrop!
I use mine to keep me moving as well, as best I can.
When I was 11, I was diagnosed with thoracolumbar scoliosis. At age 15, I underwent a spinal fusion for it, my curve went from 30 to 47 degrees in that span of time. I am 38 now.
Fast forward to 2016 - I started having severe pain in my lumbar area, I could no longer walk or stand for more than 15 minutes (it's less time now), and I had sciatic nerve pain down my left side. My scoliosis is progressing around my fusion, and I have since been diagnosed with cervical stenosis, degenerative disc disease, retrolisthesis, spondylosis and radiculopathy. On top of that, I was bitten by a deer tick in 2015 and got Lyme Disease.
Being able to move how I want is getting more and more difficult, but I refuse to let it stop me. I am a camper/hiker/kayaker/adventurer and I want to continue to do as much of that as I can. The Fitbit is my little reminder that I can still do things, maybe not like everyone else, but I don't have to let my disorders keep me down!
12-16-2019 05:47
12-16-2019 05:47
You're a very strong woman 💪
12-28-2019 17:14
12-28-2019 17:14
I'm kind of new. How do you PM people here? - fellow spoonie