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Anyone using their fitbit to improve health through Chronic illness

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 wayCat Wink

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Maybe we should start a fibromyalgia and chronic pain support group in Fitbit groups. I haven't started a group, but I can figure out how to do it. Who's interested?

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Smiley Wink  I'm all in favor of a support group for Chronic Pain.  Very few people understand the difficulties of dealing with this.

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I have suffered from benign myalgic encephalomyelitis/post viral fatigue syndrome since 2006 ever since I had mononucleosis. Only got the diagnosis late 2013 along with several others(some given 23 years late) X)

Struggles have been many and long on all levels. There was also discovered by accident that I had a benign but fast growing cyst inside my spinalcord december 2012. Was operated 12 feb 2013. Best possible outcome without removal would have been a lifespan of 5more years before all the organs would shut down for the last time after paralysis and a lot of pain of course. I was 23 years old when I got the news. Somehow weird for myself and others that someone my age would share a room at the hospital with someone in their 50-60 for heartop., that they could go home the next day but would take me 3 months before I could walk again and eat half a slice of a sandwich aftge minimum of 40 min. It was like I was back to start again were I needed assistance to be fed, turned in bed, to be groomed. Now I needed help to wipe my own arse X) 

Now ca.1 year and 2.5months later I can walk short walks, make my own food, do some easy housework a little at a time, taking care of my hygiene without assistance, do some strength training, though I still have bad days, most days are just ok or just coping. But I enjoy every little thing that so many take for granted and cannot fathom that some have to live without! Never give up and keep on fighting with determination!

 

Fitbit has helped me to keep track of my abilities and progress so as to aid doctors and myself to plan/readjust treatment when needed. 

 

But what I need is to find support in others that know the struggles, without having to educate them. beeing able to feel sorry for oneself when needed so one is ready to process natural emotions and move on without beeing told/treated as if one is lazy or making exuses for oneself. A kind of a safe zone, if you will.

I find it is hard to find this in others and in society for someone my age of 24. 

 

People allways expect so much and understand so little, that it gives the burden I already carry a lot heavier than it should be. It`s been hard enough to fight this within the "care" of the medical professions over several years before someone took me seriously enough to see me for who I am and what I could do.

I would like to surround myself with more people who understand, if not all, but a lot more than most.

Life is hard enough as it is without having to fight others all the time. Here I would like the support and encouragement that is hard to find elsewhere. So as to find more motivation to keep on fighting and to give that motivation to others who need it also.

 

Is there a group that I could fit in?

 

 

As long as there is any fight left, don't ever give up! Keep in mind, this also means there has to be space for acceptance too.
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Good Morning,

 

I am glad that you have felt comforatble to share on this site.  I do understand what it is like to suffer with daily pain and not have others understand.  I don't look sick (usually) and I put on a very good front.  It is difficult not to be able to do what others do and have them understand why you cant.

 

I am using my Fitbit to try to motivate me to move more.  I am also using a program that syncs with my Fitbit called Lose It.  It is the best program I have ever found to keep track of my eating.  For me just the awareness is a great value.  Since I don't move much my metabolism is very low and weight is a MAJOR issue.

 

I will be here anytime you would like to share or just need a word of encouragement.

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Thank you! It is just a whole different experience meeting people who understand the concept of what I have gone through and/or even have emapthy. Usually it`s the don`t tell anyone anything about yourself because that means a total dead-end in conversations. Especially when people ask questions because they are curiouse, but still don`t really want to know when it comes down to it. But kind of difficult to avoid when people ask what one has been up to the last few years and digging for gossip XP ha ha

 

I don`t usually tell others about these things, like you bravefacing it, so as to keep on going or avoiding uncomfortable situations.And like you described, not something that is a clear neon sign saying that I am ill. But I`ve figuered that it is time for me to stop beeing so afraid. And that I kind of have the right to "blurt out" a little about it when it has been my life the last 6 years or more. So I`m starting to dip my toe or rather jumping into it by sharing my story within the fitbit community. Maybe that will help me prepare for beeing more visible again when meeting others.

 

Have also with the help of fitbit and food plan been able to lose ca12kg since I started. Which was very much needed. Only have few kg to go to reach my goal.

 

Again, thank you for your encouraging words!

 

In risk of "sounding" like an overly excited kid at a football-match, Go fitbitters!

As long as there is any fight left, don't ever give up! Keep in mind, this also means there has to be space for acceptance too.
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I would say to try to pace yourself so that you remain as active as you can without have set backs where you are in bed after overdoing it.  It is considered, among people with have ME/CFS that it bad for your health to over do and then need to be in bed.  For me this means overdoing mind work - ie time on computer etc as well as physical work.  I realise you dont have this diagnosis - sound like you do get a cardinal symptom of ME/CFS - which is called Post-Exertional Malaise.

Good luck.

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I have DDD, sciatic nerve pain, femoral nerve pain. I also have had chronic kidney stones for 30 years & now kidney disease. My dr said I might get some relief from the back and nerve pain if I lost some weight. I was 30pds overweight.

I got tired of waiting on dr appointments and decided to walk if I hurt or not. I started walking on May 16th using S health on my phone. I did ok the first three days but the next 3 days I was laid up in horrible pain. I take Gabapentin, Tramadol & sometimes Percocet for the pain but the last few weeks the nerve pain has almost gone away so its working. The nerve burning isnt bad when im walking but is when I stand still for a few minutes.

Ive tried 3 different pairs of shoes & several types of insoles but still have pain in my left knee & back. I use alot of ice on my back & knee after I walk. I also split my walks up. I walk on dirt trails since the pavement really hurts. My legs have always been very flexible so maybe that helps with the walking. I also walk in the house on the carpet & that doesn't hurt as bad. I have GAD & OCD so I tend to really, really over do it. I just got the fitbit a week ago but boy does this thing make me walk.

I hope everyone feels better and reaches their goals.
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I can sure understand your frustration.  I have connective tissue disease that can be affected anywhere so I never know what is going to bother me.  Right now I have been sitting too long so my upper back is screaming.  Now when I get up and move my lower back and hips will act up.  I just take it on a day by day basis and do what I can.  Can't immagine living without my meds.  The dr. just started me on nurontin to help block the neuropathic signals.  It did work but I decided the side affects weren't worth it to me.  I do have a chiropractor who is a miracle worker.  Never thought I could get that type of releaf but he truly is a one of a kind.  Not the regular Chiro.

 

Glad you have joined so we can support each other.  I have started a group for Chronic Pain.  You might want to check it out.

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It is so nice nice to hear all your stories and know that I am not alone. 

There are already some Fibromyalgia and ME/CFS groups use the search groups function to find them. You will find I am a member of a couple of them already.

 

I have been having Hydrotherapy and finding that it really helps. I am not sure what to log it into my activities as swimming seems to add too much activity.

 

Cat Very Happy

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Tinkgirl52;  I had the same problem with my hips and lower back hurting when I started walking a little over a month ago.  It was terrible but after a week of walking the pain went away.  Its really helped me to walk on dirt trails/grass instead of pavement or concrete.  I had been sitting or laid up for the last 2 years.  The times i went out and did anything i had to be under the influence of Hydrocodone or Percocet.  I am now off the heavy pain killers but still take the neurontin(Gabapentin).  I won't be doing any lifting anytime soon due to my messed up back but the nerve pain is much better.  The exercise has sure helped with my depression to.

 

  I have lost 18 pounds since May 16th and went from a size 38 waist to a size 34.  I also started therapy with a new Psychologist the other day so that will hopefully help with my social anxiety.  Im praying and praying that i can live a normal life soon.  Hang in there and i hope theres a way you can continue taking the neurontin.  The only real side effects i noticed from it was being dizzy, slurred speech and being tired after i took it.  Most of them went away after taking it awhile.  I hope you can get to feeling well enough to get away from some of the meds.  I still take Xanax, Zoloft, Tramadol, Gabapentin, Flomax and Propranolol & only drive within a 20 minute radius of my house since im always drugged up.  Hopefully the exercise will help everyone feel better and lead a normal life 🙂

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Im glad the water therapy helpsSmiley Happy  I had it when i hurt my back in 2012 & loved hanging in the deep end with the weights on my ankles and floating on the pool noodle. It really takes the pressure off the spine.  Sitting and standing still is the worse pain for me.  Walking on hard surfaces hurts to.  I was walking indoors on the carpet but i noticed its getting worn where i walkSmiley Embarassed.  So i guess its all grass or dirt trails for me now.

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I keep hoping it will improve with more movement.  It has been about 2 months now but I can't see any change.  My goal is 5,000 steps per day.  I know I sit too much.

 

I am following the south beach diet.  It was very good for me 10 years ago.  I have lost 10 pounds in the last 2.5 weeks.  Just have to keep at it.

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Congrats on the weight loss!  Hopefully you will see some positive changes soon.

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YAY other people who have gotten the Fitbit for more than just doing the gym life! I have epilepsy. Juvenile Myclonic Epilepsy which includes a variety of 3-5 types of seizures in its recipe so my health is of absolute maintained importance. I've had it all my life and turning 50 in August. Stress, rest, good diet important. I've been very active all my life but more so in my youth alot. Because of the activeness in touth I have been able to avoid the usual side-effects of bone loss, bad knees, liver damage, kidney issues, teeth problems, hair, skin, etc. Never even ever broken a bone in my lifetime. But over the years the seizure medicines have started to take a toll on my body tiring me out now and weight management. I see no reason to spend money on a gym when it is common sense to move. I decided to get the Fitbit One after my doctor because I am starting to have seizure break-through again (it happens again periodically cause it is never 100% 🙂 just recently prescribed another add-on medicine to a regime making total of 4 I now take altogether. The end result will be that I will possibly go from being my current weight of too much to dropping too much VERY fast as much as 30to 50lbs in coming 3months if I can't at least control/manage my intake. I saw that the Fitbit has ability to let you chart your foods and brands in database adjusts for height, weight, etc with common sense. Epileptics also have sleeping issues causing irregular sleep patterns if you have nocturnal seizures and yes I have the sleep moniter is turning out to be a great thing. I am learning alot from the device and hope to see what the summer brings me to the mstrengthening of my health and getting a new handle on the resurgence of the seizures. 

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Hi,  My name is Lisa .  I am on day five on my fitbit journey.  I love the thing.  It does keep you accountable.  I find that it works well with a treadmill and the numbers match up. 

I have fibromylagia.  I was diagnosed five or six years ago.  I need to start slowly, which I dont, or I will have a flare that will last a couple of days.  

The more I  move the better I will feel.  I tend to like to lay around when I have a flare.  That is the worse thing I can do.

Overall,  I have been walking for a month and I have been using the fitbit for five days or so  i have more energy and my stress is a lot less.

 

lisa

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Your story sounds so familiar!  I am a 200% person and learning how to pace has made all the difference in my life.  Now I just have to be careful not to take too much down time!

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such fine tuning is required and constant adjustment.  What is okay one day is not the next.  I have to constantly listen to my body and respond.  Yesterday I kept working on paperwork when I was tired and needed to stop - and today I have pretty much slept all day!

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I have ME/CFS and fibromyalgia since 1993. I have been in and out of hospitals many times from dehydration. I never work again since 1993 and got SSDI in 1994. I am housebound now and with and added diagnosis of MS in 2006. I got Fitbit as part of trial for MS to encourage keeping walking, however, I not in that class (unless it’s later stages or primary progressive). As those with ME know, standing and walking raises our heart rate and we are exhausted within minutes.

 

My weight is fine. I cut out caffeine, soda, most sugar and started eating healthier many years ago. I try to eat more organic foods, fruits and veggies. Exercise is such a struggle. I tried so many and can't do them because of the up and down action raising heart rate and then exhaustion. I have to keep muscle tone and bone strength (also have osteoporosis). I have found its called Old School exercise where breathing fast is the cardio and using weights or body. I tried before and just moved up too quickly and burnt out. I am trying again and will do much slower but there is no way to log it under activity without calorie burned. I like the Fitbit as I can see I burning more calories than taking in and interesting to find out how many steps I actually can take. Like many of you said I won’t be competing with anyone.

 

I am glad to see I'm not the only one. I can relate to what you guys have been through with doctors, family and friends. I have gone through with them if I just push harder I can come out of this. I wish it worked that way. I had my grandson over and did more than usual and was exhausted. I was laying out the ground to show my grandson (he wanted to see/hear) how my hip bone pops constantly and then I couldn't even raise my right leg at all. It was frozen and finally later moved but something is going on as it happen again when sitting I couldn't move at all. It was kind of scary. Now I am in 2nd week and feel worse than ever and so much pain. But I keep trying until I can't move.

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Snow Drop... I understand... Fibromyalgia... help me help others as we begin a journey together.

Dawn | USA Flex Charge HR Charge Surge Blaze Versa 2 Android
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I just joined FitBit but have had MM since 1996.

 

Embarking on new treatment this week and have injured my back as well.

 

I hope you are doing better.

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