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relationship – fatigue & oxygen
I’m new to this site and have a question related to fatigue and oxygen. If I need to direct to another forum, please advise. Thanks!
I was diagnosed with PF over 5 years ago. I regularly walk 4-5 days a week. A slow one mile walk (takes 25 min). I wear my oximeter and maintain a pace that keeps it over 88. But it must be a slow pace.
Though I sleep with supplemental oxygen and use it at other times at home during the day, I do not use it when I walk. It doesn’t seem like it’s really needed. My breathing never gets out of hand. I’m now thinking I should start using it. Oddly, I’ve been under the care of very experienced Pulmonologists and none have offered guidance on this subject. But I’ve never asked the question. See ? further below.
Recently, I started riding a stationary bike. Also at a slow moderation. Did it one day, for 15 minutes. My quadriceps mostly at work. Far easier than walking. Piece of cake.
… Until then the next day. My quads were far more sore than expected and my level of fatigue was off the chart (for 2 days). I am referring to overall fatigue as opposed to muscle fatigue. I was overwhelmed with lack of energy. Extremely tired and wanting to lay in bed all day. Maybe my worst days since diagnosis. I’m familiar with fatigue. It’s been a common symptom for 5 years. This experience was much worse.
I have not been back on the bike since : ) If I use my supplemental oxygen the next time while on the bike, will that help reduce the level of fatigue? I am assuming my quads, being the large muscles they are, were being greedy with my body’s limited supply of oxygen and was the cause of the extreme fatigue? It completely caught me off guard.
Thank you,
David (Manny)
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11 Replies
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I don’t walk for exercise due to neuropathy, but I bike and do water aerobics several times a week each. My Pulmonologist suggested that while I may not think I need it (I was 85-89), I should use portable oxygen while exercising so I can push myself a little harder, probably get more out of it, and keep my O2 at more optimum levels.
I started using it on my bike rides (Dec 2024) and found it more comfortable, going little faster although not intended, just happened.
I have started just this past week brining my oxygen to pool side along with pulse ox, I stop when there is an opportune moment, check my pulse/ox and if O2 is low, give myself a boost for 2-3 min (back to 95+) and then get back with it.
I have not tried using the 02 in the pool during the aerobics but a am not opposed to trying and may do so as I incorporate O2 more into my routines.
I have been diagnosed 7 years and only started with the 02 on the bike in December 2024, so 3 months ago and in the pool this week, so just a few days.
It is worth the try, worst case, leave it at home, best case, you have a better ride and a better walk, take it on both!
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I go to the gym daily using oxygen when exercising. I exercised daily before my diagnosis so I’m in good physical condition. I’m 85 and female. I find that when walking outside I walk too fast and my h20 really drops even with oxygen. The treadmill allows me to pace my speed. I used to walk at level 3. Now I walk at 1.2. I break the walk up into 10 minute increments; i.e., take a break every 10 minutes as my h20 drops the longer I walk even on 4 or 5 litres. I also use the bicycle with no problems with calf pain. I always feel good after exercising and have a lot of energy because of it. Just go very slow and make sure you use a high enough level of h20 to keep your oxygen level in the mid-90’s. Of course, I check with the oxymeter after each 10 minute session. Pacing yourself is very important. Just keep going and rest when needed. Even 10 minutes of walking on the treadmill is better than nothing. Good Luck and keep going.
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I was diagnosed in 2017. I started using 02 at night about a year later. I started a regular exercise program after attending Pulmonary rehab in 2019. About a year into it, I started having trouble maintaining my 02 levels and keeping my heart rate under 120. I started using 02 –2 liters– and that made a huge difference. I have been walking an hour, 5 days a week on a treadmill for approximately the last 5 years. I use a treadmill because I live at a higher altitude with a lot of hills. I’m also able to set my 02 tanks on the treadmill. It’s the most boring walk imaginable so I read or watch movies on my IPAD😁 I sometimes take exercise classes and find I need my 02 then as well so wear it in a backpack.
I do experience a lot of fatigue. Some days are worse than others. I started with OFEVE, lasted about 3 years (the worst GI issues ever), and switched to Perfenidone almost 2 years ago. I feel like a lot of my fatigue is due to the Perfenidone rather than the exercise or 02.
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It is recommended to keep your O2 sats (SpO2) at least above 90, preferably above 94 if you can at all times. This is prevent problems with your organs not getting enough oxygen, especially your heart and brain. One fairly common problem with people who have had PF for a time is getting Pulmonary Hypertension which is often caused by consistently having lower O2 sats. Becoming easily fatigued seems pretty common to people with PF but I’m not sure it can always be attributed to low O2 – as I often get very tired with normal sats.
I use a POC (InogenOne G5 – that delivers the equivalent of only 1.3 L ) that helps to keep my O2 sat above 92 when going on slow to moderate paced walks that can be strenuous but not enough for steep inclines if it’s more than a few minutes – I’m still trying to get a better solution for outdoor exercise but it’s difficult with my Durable Medical Supply place and Medicare. What I really need is the smaller, light weight O2 tanks but Medicare only pays for either the POC or Tanks – not usually both.
The more you are able to gradually increase your exercise tolerance the better your body/circulation will get conditioned and may likely result in some improvement to the oxygen getting circulated. I try to use an exercise bike 5 days a week for about 30 minutes and wear my home oxygen concentrator which can deliver up to 5 L continuous, long walks with my dog, and a lot of exercises every other day to improve muscle strength. There is also the Pulmonary Rehab exercises that they suggest to do 2 or 3 times a day, every day – I don’t often meet their goal – but I do try (incentive spirometry and the like) as much as I can. I don’t enjoy it yet but I still hold out the hope that eventually I’ll be able to say “Awesome! It’s time to exercise again!”
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Thank you each! I very much appreciate the advice and enouragement… and sense of humor : ) I’m impressed. Wasn’t expecting the large handful of thoughtful, comprehensive responses. This is very helpful. Many thanks!!
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I am probably older than the rest of you, 86. I was diagnosed in 2015. At the time I went to rehab and it got rid of any symptoms. In 2019 it came back and I was put on OFEV and oxygen. After 2 years on OFEV I had to get off. The side effects were too much. I also weaned myself off of oxygen
I use oxygen only before I go to bed for about 25 minutes. I can live a normal life for a 86 year old without it. I have neuropathy in my legs, so I don’t exercise very much.
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Thank you Buddy. Appreciate your taking time to share that. I also deal with leg neuropathy as a result of chemo (NH Lymphoma) 17 years ago. Based on your remarks, I’m thinking that it probably exacerbates the PF issues. I have never tried very hard to seek ways in overcoming the neuropathy. Maybe I shoulod. Hard to know what to blame symptoms on many times. Thanks again for sharing your experiences. David
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I’m curious how you weaned yourself off oxygen except fror 25 minutes at night. I’m a 76 YO female diagnosed in 2008 with IPF. Up until 5-6 yeas ago I didn’t need Ox but now on it 24/7 and through my Cpap at night as well. I’m on Ofev but just once a day due to the stomach distress.
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It really was not that hard. I just quit using it. I carried my oxyemeter with me and went as far as I could without oxygen. Then stopped and sat a little while till my reading gotback to 96 and kept going . I thane pretty much knew my limits and I can lead a pretty normal life without oxygen!!!
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I really appreciate everyone’s input
I am 70 and was diagnosed 4 years ago.
I was pretty stable until January when I contracted phenomonia…. not a good thing with IPF. Just got back from u of Penn lung transplant center…. now they say it’s time to get on the list…. blaaa
I feel fine and don’t use o2 but on a 10 min walk I do now drop into the high 80’s
Did anybody in this chat get a lung transplant ?
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Jud, I am with U Penn also. Going through testing again and hope to get relisted soon. All the best to you!
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