I’ve never seen this mentioned anywhere else but here goes: I track my spo2 levels all the time (curiosity I guess) and ive noticed something interesting: When I feel like I’m overdoing it cognitively my spo2 jumps to 99% When I feel like I’m overdoing it physically my spo2 dips below 94% When I’m at rest my spo2 is usually in 95-97% range has anyone noticed something similar? Would it be possible to devellop managment strategies similar to heart rate pacing with this?
Hey @yannlk, that’s interesting. I only began to check my spO2 more than occasionally when I first had acute COVID-19. I struggled to breathe for so long day after day I didn’t know if I would survive. I’ve had asthma all my life that can get pretty bad with infections and that was nothing like this. I was inhaling my high strength inhaler, prescribed for this Covid every hour. I was advised on the phone how to monitor my own ability to breathe in certain ways, so that I would know when to get myself to the hospital since waiting for ambulances wasn’t advised, demand was too high (still is as it happens due to the destruction of our healthcare system by current government). My pre COVID spO2 was always at 98/99, usually 99 when tested, usually this would be taken when I was unwell but also random other occasions at the Drs surgery. My during Covid acute phase dropped as low as 94 terrifying, but fortunately that was a very brief drop. But it went 95/96 pretty regularly during that period. Although levels returned back up to usual 98/99 after first few weeks. I’ve had 95/96 since from time to time with either repeat Covid or other infections now that I have LC. But bear in mind I have cold hands since first COVID infection my circulation is affected, still LC I guess, and that will mess with the readings. I don’t check my readings now unless I’m really concerned about my breathing due to an acute infection. I don’t get the same reassurance as pre LC, just stress and bad memories. So I’d just prefer not to. I do find my readings jump up a down too quickly to be useful in tracking anything but breathing ability over a short specific period or the passing of an infection from causing a significant challenge to my body into the recovery phase. I have thought it could be more useful for asthma management if I did daily or three times daily testing while keeping my body temperature as stable as possible and lifestyle similar, just to see what happens. But I also don’t know if it would be worth the effort or not, so I never have. Also the machines (well not the machines but you know) are colourist, people with darker skin don’t get accurate readings.
I don't think I would find finger pulse oximeter oxygen readings helpful for pacing. My readings taken at random vary between 95 and 99, usually 97 or 98. When it's at the lower end, a few deep breaths quickly bring it up to the top end, and similarly breathing shallowly or holding my breath for a very short period drops it down. I can see that it's different if you have Covid or long Covid, or a lung condition, but for me I don't think it has any relation to my ME symptoms. At least not any new information that I'm not getting from my symptoms and heart rate.
Yes, mine go from 92% to 98% regardless of how I'm feeling. They're not even affected in an obvious way by asthma flares. I had six months of it after a neighbour turned over a compost heap, releasing such an enormous cloud of fungal spores that the lawn clippings the council gardening team put in our bins the following week grew a two inch-thick coat of white fuzz. I took pulse oximeter readings out of curiosity, but the pattern seemed the same.
Same for me, I am very severe, and for me the readings are lower, often lower than 90, etc. But the general pattern is the same.
Just wanted to add my experience. I have long had low spo2 down to 83 on odd nights on my Samsung watch. The gp ridiculed these recordings as not accurate. For my part when I awake I know how the previous night has been by how challenged I feel once I get up. So low spo2 equals a bad me type day. In late January I had a general anaesthetic. Recovery was problematic apparently with spo2 around 90 which rose to 95 with o2 and promptly dropped once removed. 24 hours later still an issue. On my discharge letter they asked the gp to investigate. Gp says his meter shows 98 … so nothing going on. Attended a&e for other reasons post op which for once was actually quiet. When they measured sp02 at entry they found it at 92 using the big trolley type machine. The other trolley unit was 94 and the nurses finger unit was 98. My own semi pro unit was 93 all measured at the same time on multiple fingers all being re seated etc. Nurses were confused as they take these measurement on all people entering the system. The op recovery nurse told me his Samsung was accurate to the hospital units. so I think the point is these spo2 tests are not accurate especially between machines. Recording a change maybe useful. As part of my post op I was put on antibiotics and noticed an improvement in my lung capacity peak flow meter to 550. Now 5 weeks later I am down to 450 again which I can manage with some breathless periods. As I have said on here before, I used to find diving beneficial many years ago - who else mentioned they recovered from ME by diving? The doctors name escapes me? But also long haul flights seem to have been beneficial to me, maybe. Next week I have a long haul trip, so I am recording capacity and spo2 and hope I get a positive kick rather than being in bed after.
Yeah I also heard that they were not reliable generally due to various factors, but especially between machines. Maybe you could check out some usage guidance from peak early pandemic I think I remember quite a few of these you might be able to optimise within the limitations. I’d expect a watch not to be as good as a standard unit. You might want to have three if you’re really getting into it to see how much they differ between them.
That was Paul Garner, who said he developed ME after Covid and then recovered from it very quickly. He said he did things that led to his recovery, others may think differently. I don't know about its effect on ME, but free diving's* very unlikely to improve peripheral oxygen saturation. If the water on the face is cold the mammalian diving reflex kicks in, which reduces peripheral circulation to prioritise supply to vital organs. Anyone who's swum underwater lengths of 50-metre swimming pools will be familiar with the odd sensation of their arms and legs getting progressively heavier as they near the end. * PS: diving with the breath held—no snorkel, no SCUBA.
Seems like it. Haven't seen/heard of many pwME with these issues. How long have you been sick? How old are you? Thank you!
Hi @yME Just to note that I too was recorded as having very low oxygen levels while recovering from major surgery some 12 years after I developed ME. I had not previously been aware of the problem. Levels improved after I was put on a nasal oxygen feed in hospital. At the time I was not in a fit state to note the details of those levels or to follow up with doctors. I would probably have been categorised as having 'moderate' ME at the time. In subsequent years I have recorded low oxygen levels at home using a finger clip oximeter. Following up with my GP is on my 'list of things to do when I have the energy'. In other words, I may never get round to it.
