Blood oxygen and breathlessness

I have a smart watch forerunner 255 I think vivosmart.

I have severe ish ME since 2006, am 57 and in bed 2-3 days a week with about 2 hours of morning energy so I can sit up and have the very occasional outing … breakfast locally once a month for example.

Any exertion mental, physical or emotional wipes me out.

After I’ve over exerted the first warning signs include breathlessness, coughing, lungs constricting, start of barking cough plus air hunger.

I noticed after a recent period of exertion that my overnight blood oxygen read 82-84%. Now I’m not sure how accurate the smartwatch is. When in hospital at the start of this year with a broken hip they always had to get me doing deep breathing when they did my observation readings as my blood oxygen was low plus I was on oxygen for a few days. Generally if it’s low is the high 80s of low 90s.

I had an oximeter after about 12 years ago I had a paramedic out as my heart / muscles wee hurting after hours of breathlessness. He told me to get an oximeter which I did. Of course now we have smart watches. I’ve just ordered a 24/7 wellvue ring plus alerted my doctor who has suggested a sleep study. I have known I occasionally snore but no idea how much as my husband and I sleep separately to help me sleep. Im interested in others experience.

I have my first ME Bath NHS hospital consultation on Monday so will be raising it with them as well.

thx

Sally

 

I'm just a PWME. Watches are considered toys by my GP and in many respects I agree. The most reliable bit of kit is a chest strap. That's very useful.

I'm same age/profile as you. Same life outlined in your second sentence.

However, last month I hired an oxygenation compressor. It completely changed every aspect of the general monthly trends on the watch app. It's been a fantastic success. Not a cure but a huge step forward from what you've described.



Obviously, only my experience.

 

Hmmmm very very interesting …. How have you measured your blood oxygen to know you needed an oxygen compressor and may I ask how it’s made a difference to you? Also which model have you hired?
Thx

Sally

 

I have measured my oxygen properly in the past. My watch has an oxygen reading. Awake and when sleeping. As I said I don't believe it's accuracy but I do see trends. Same with sleep.

I have tried all sorts over the years but with no success. Exception would be ibuprofen, nattokinaise recently.

The anecdotes about oxygen in the blood and the opening of a hyperbaric service near here meant it was possible to rent a machine for a month. The improvement has been amazing. I don't feel 'hung over', my GI problems have improved, the increasing skin problems are receding. Able to sit up. Pain and aches have decreased. No mid morning or lunchtime crash. If I went for an appointment I would return and sleep for 3 hours. Feeling awful when awakening. Now I come in rest with the mask for an hour. This might all be placebo?

However, the watch readings. Sleep at night has increased by 90 mins. Quality of sleep improved. O2 levels completely different from previous months. Heart rate stable line (higher and lower), previously like the Alps. I see differences in 'Body Battery' instead of a flat line. Like winding the clock back to the first year of ME.

Interestingly for me, 5 hours doesn't make any more difference than 90 mins. I do stress though this is only my personal experience. I have read about Hyperbaric and ME. I'm not cured but my quality of life has vastly improved. From nothing to something.

 

Hi @kilfinnan

Your story is interesting.

Is an oxygenation compressor, also called a hyperbaric chamber?

I've read that hyperbaric chambers may help pwME. I don't have any experience with these, though.

ETA: Hi @kilfinnan, I looked this product up, and see it's not a hyperbaric chamber.

 

Can I ask where you hired the oxygenation compressor from and the model. Thank you

 

I also note that most oxygen compressor hire places need a GP / hospital approval … can I ask if your GP helped with this? Also how long have you been trying it and when did you notice a difference? Sorry for so many questions. And I appreciate all your kindness in answering.

I’ve just googled the NHS sleep study which is generally over one night but as my oxygen and sleep varies a lot over a week to ten days I’m not sure how the NHS study would help. My GP suggested it. I’d have to massively over exert before hand to ensure breathlessness. Of course on the odd occasion I don’t crash … very rare … but it would be the night of the sleep study.

does anyone know what oxygen saturation readings will the NHS accept E.g. from which smartwatch … what is considered valid?

 

@kilfinnan I’d also like more information about what kind of machine your hiring, as my private doctor recommends I try hyperbolic oxygen therapy. I wasn’t convinced at first but I'm seeing symptom improvements under their care so I’m willing to give more of their suggestions a try. They said I’d need at least 10 sessions before I’d begin to notice improvements, so a home hire machine seems convenient.

 

I'm sorry his is really brief. I'm not keen on posting a ton of basically thoughts on here which some people may object too. However, my watch app graphs heart rate over periods of 4 weeks. It's gone from jagged lower and higher to straight lines. I do the same each and every day. A very set pattern of life. I know that there is a difference and it's not placebo.

I have had a rash spreading down my face for 18 months. Very unsightly. It is healing and receding.

I've wondered about hyperbaric before. Symptoms seemed like Mountain sickness in many ways. In December Capability Scotland old me a service opened in Dumfries. I spoke to the person there. It was so expensive. She suggested a portable home machine for a number of months then the chamber. This is sill for us expensive but I hired the machine for one month. The ideal that I could have a machine at home never entered my head.

It's a 10l 98% oxygen. 25kgs, medical grade. The cost was £250pm.

For me the benefits were immediate.

I wouldn't even discuss this with my GP although I would expect he'd say crack on. The service suggested an hour a day.

It goes back Thursday. I don't want to pay £250 per month. The machine costs £1500 and we're better finding the money to purchase one.

The oxygen people are asking if I would do a chamber. I'm not sure I don't know how much further it would take me. I suspect it wouldn't.

Important, I now feel that I have the chance to do other changes to my life like diet. Before it all seemed so pointless and difficult. I was reclined 23.30 hours a day. And really important not to chase the energy.

Again can I stress,this is only my personal experience and thoughts. I don't want to mislead anyone. I still have problems recovering energy. POTS symptoms still there but much reduced.

I'm not promoting anything. I only wanted to give my opinion on watches. Their trustworthiness and the opinion medical people have. Don't tell your GP the O2 levels on your watch are low.

The trust who I have been speaking too are Just Breathe O2 Dumfries.

 

I've only done a series of sessions in a shared hyperbaric chamber, so always with two or three other people. It was an interesting and quite enjoyable experience, but it was also really noisy and a bit knackering. For me the net result was in the negative, i.e. the exertion involved exceeded any gains.

I'm not severely ill and my ME fluctuates, so I'm less likely to be able to detect a small improvement that could be very valuable to a severe patient. Also, using the dive chamber at the local MS Society involved a 20-minute journey each way, so it's hardly comparable with an in-home service where the user can be in a chamber alone. I'm glad I tried for the experience, but I probably wouldn't commit further time and energy to it.

 

Super thank you and do message me with any other thoughts as all info is useful. I had a bone scan due to a broken hip and then operation on 4 Janusry and had be bone scan yesterday which revealed severe osteoporosis. My birthday tomorrow and will be 58!!! I had a minor stroke when I was 55!!! Life is just peachy and thx goodness for outlet on forums like this.

It sounds a good idea to hire one for a month as you’ve done to check out if it works for me.

Thank you everyone and hugs.

 

In my early days I found scuba diving very effective in reducing my fatigue even a 1 bar 10m change. Also a benefit from long haul flights. I have seen others reporting similar improvement over the 35 years of reading forums. I speculate that it’s the gas pressure change as I was on air perhaps causing the trapped waste Co2 to be displaced from muscle?