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My oxygen level is 98 but I am increasingly short of breath. is this common?

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RichardAT profile image
RichardAT

O2Sats do not relate directly with sob that is due to narrowing or restriction of airways. This can result in hyperventilation and high O2sats. Take care, Richard

Yes, very common. You must understand that shortness of breath is not directly linked to low oxygen saturation in the blood. They are two different issues so you can be SOB with a high oxygen level and can have a low oxygen level without too much SOB.

Delahunt profile image
Delahunt in reply to

Nurse who. Is it methonk different? . Always say your fine it's frustrating. Yet when I essabrate sob I have a temperature & sats are still up. Then they say it's anxiety yet you have temp . Nurse causes me anxiety . Joke . My 2 sisters died there sats to was ok . Sad copd isn't given the acknowledgment off understanding the copd patient . Where as a cancer patient with discomfort wouldn't keep getting told it's anxiety . Well it's what it is sob essabtation temps not all down to anxiety. Drives me mad

Sarahem1965 profile image
Sarahem1965 in reply to Delahunt

Anytime you're feverish.. Most ALWAYS some sort of infection in your body whether it be viral or bacterial..

Delahunt profile image
Delahunt in reply to Delahunt

Hi I relate with everyword off your comment . I also had 2sisters that died & I was worse than they was . Also I told the nurse not every one with copd has to on Ocygen when coming to end off life with copd as my sisters & my mother died . Just get sick off professionals saying it's anxiety all the time . Don't get me wrong we experience anxiety & know the difference from detonating & aniety. Feel you are not being given acknowledgement as any other health condition such as lung cancer . Also information surrounding stages off copd does not reflect the true suffering that copd has on individuals . Professionals just fob you off because your not on oxygen . Have good sat reading. However you can have good days maintainh carbonoixed. Also says reading good for mean yeah we are ok as they say oh you ok it does frustrate you & copd information should recognise this in the guidelines to health professionals to stop causing us to develop anxiety to ensure are needs are met like anyone else who is ill with a temp copd pain . Bernadette

mooseloose profile image
mooseloose

Short of breath symptom checker medicinenet.com/shortness_o...

PollyP profile image
PollyP

Hi , If I were you I would get your shortness of breath checked out with your doc or nurse tomorrow. If I had oxygen sats of 98 I would be skipping down the street.! If shortness of breath is not normal for you then best get yourself checked out. Good Luck and keep well.

Blessed1953 profile image
Blessed1953 in reply to PollyP

I would 2 🏃🏃🏃

Delahunt profile image
Delahunt in reply to PollyP

You wouldn't be skipping as copd with all the tests to confirm can have high sats & related to muscles ??

mskpjb profile image
mskpjb

Last week I saw the chief resp nurse, was very breathless but my oxygen level was 97 so she said I was fine.Yet I`ve been carted off in the ambulance before now gasping , with a high oxygen reading. The ambulance man did explain it to me but I can`t remember what he said so auntymary`s explanation is brilliant and I shan`t feel like a fraud in future, Best wishes, mskpjb (Sheila)

mel909 profile image
mel909 in reply to mskpjb

Relate to this, I have been sent home from emergency room, still suffering. I don't think this is seen as a real problem by a lot of medics.

mojo50 profile image
mojo50

my husband has copd , doctors have said he is not far from end stage but his sats always remain high 97 or 98 but he cant walk far he is so breathless it is almost unbelievable but his sats are still good , he has a community matron come around once a week and she takes his sats and they remain good but his breathing deteriots Even i cant answer why wish someone could

got luck xx

19441934 profile image
19441934 in reply to mojo50

My late husband had end stage c.o.p.d, he used O2, overnight for 3Years, unfortunately following a community acquired Pneumonia he developed a d.v.t, followed by a PE.By this time he required 24Hr, O2, however I cared for him at home, and I had him for a further 3yrs.Try not to be scared when your advised end stage, how long is a piece of string, Take Care, 😆 .

libby7827 profile image
libby7827

I always have good sats, even when I'm really bad. On a good day I can only walk around slowly within the house, but sats always good. Don't know why they bother taking it to be honest!

Batbara profile image
Batbara in reply to libby7827

Hi Libby the reason they take sats is because if your oxygen level is too low, then you would need to be on oxygen. All of your organs would be deprived of oxygen....that would not be good. This is the explanation they gave to me. I even had a sleep test where they put the pulse oximeter on you while you sleep,and it monitors your level all night long. If it gets to low at night one might need oxygen only for sleeping. Hope this helped. Barb

FlDiana profile image
FlDiana in reply to Batbara

Barbara, My emphysema and end stage COPD require me to use oxygen at night and when I go to the store. My Pulse ox readings prior to nurse testing me are 97, after ten minutes of hard exercise without oxygen, and feeling faint and very SOB, my pulse ox is the same 97. I have ended up in the hospital every year for the past five years, and the COPD has gotten worse. Im there for 7 days and many test and blood is drawn. I do no believe in pulse ox machines. I do get out of breath very easy. Im 67 years of age.

Blessed1953 profile image
Blessed1953 in reply to libby7827

I agree; probably to make you feel good

Wizzy-wig profile image
Wizzy-wig

Thank you all! I am seeing my doctor this week and I will let you all the outcme

poply profile image
poply

hi my breathing was getting worse .ithought it was my copd was getting .had pulse taken when i went for flu result pulse racing reading 150 had ecg admitted to hospital for 3 days on heart monitr now on tablet to slow heart rate and warfirin much better so don t think everything is copd getting worse .always ask questions .

soothsayer profile image
soothsayer

Im in a similair situation..i have copd and sats of 98% but im always short of breath and cant do anything physical without struggling..it can be very confusing and frustrating because people assume you must be doing well.

buny993 profile image
buny993

ooften due to heart condition

BarbR profile image
BarbR in reply to buny993

I think that your  comment is right on target. In many cases a heart condition is causing the shortness of breath. I am experiencing this situation - shortness of breath with high oxygen levels - and will discuss  it with my physicisn tomorrow. I'll tune in tomorrow evening if she offers me an explanation.

Blessed1953 profile image
Blessed1953 in reply to BarbR

I started using a cpap machine and it seemed to help

patomic profile image
patomic

It is hard to understand why we can have sats of 98% and be breathless. I think it has a lot to do with respiratory drive and the fact that breathing is very hard work for people like us. Many, many times I have just wanted to lie down and just stop because I have been so exhausted. People who have never felt this way should just spend an hour in our shoes and they will see just how frightening it is to be breathless. It is so easy to stick a sats monitor on your finger and tell you you have 98%, tell you that you are fine when you are visibly gasping, terrified and suffering.

andreafm profile image
andreafm

Hi there

I have individual sats of 98% but when I monitered myself over some hours with a wrist oxymeter that records the oxygen levels, my levels averaged out at 87% throughout the day. I uploaded them to my computer and printed them out. This has helped me to get the proper attention from some doctors.

I have episodes of hyperventilating [over breathing because I am breathless] along with my oxygen levels going up and down all the time, so without recording your levels over a space of time it doesn't really give a good indication, in my opinion.

If you had a basic oxymeter at home and give it a try in different circumstances, leaving it on for a while when you do......this may help to get a better understanding.

Hope this helps

Andrea

Wizzy-wig profile image
Wizzy-wig in reply to andreafm

Thanks so much. Very helpful idea!

in reply to andreafm

Thank you makes a lot of sence ,I know I need oxygen sometimes.

libby7827 profile image
libby7827 in reply to

Unfortunately, some people are not suitable for oxygen as they retain carbon dioxide, I am one of them. I can be practically on my knees sometimes and my sats are still around 90. I'm not allowed oxy, although some retainers are. If you put "retainer" in the search bar at the top right hand corner it will come up with some posts on the subject. x

BarbR profile image
BarbR in reply to libby7827

Could please explain why people who retain CO2 are not suitble for oxygen use?

Sarahem1965 profile image
Sarahem1965 in reply to BarbR

Hi BarbR...I'm not the one that posted about the carbon dioxide but I can tell you it's absolutely true.. It's happened to me on more than one occasion... it's a very long, lengthy, interesting subject... google just that, high carbon dioxide levels.. you'll get so much good information that'll be better explained than what I could do through this forum.. good luck with your health problems..

eking profile image
eking in reply to andreafm

That's an excellent idea and I will jsve my husband try this. Thanks..eking

jos2-je profile image
jos2-je

So is mine.

abd1966 profile image
abd1966

my sister age 25 years off n on breathlessness whate kind of oxygen should i keep at my home for emmergency and nubulize like sulbutamol with steroid is help full for her

in reply to abd1966

whatever your sister's doctor prescribes, absolutely nothing else.

nancyl5 profile image
nancyl5

I cant even walk ten feet without being short og breath

AllyGardner profile image
AllyGardner

i have severe emphysema, i struggle often and my muscles get very fatigued. Whenever i go to my doctors i am told my oxygen levels are good and quite often i am left feeling like a great big fake. I cant seem to get any answers or reasons, just blood tests etc. I have learnt more from reading the comments below than i have from any other source open to me. It is a frightening disease to have and made worse when you cannot get answers from those who are treating you. I thank each and everyone of you for your comments. x

JPPL profile image
JPPL

Dear Wizzy-wig,

For years I have had episodes of being SOB and after ruling everything else out, including my documented asthma, I FINALLY tracked it down to the CARAMEL COLORING in the foods I was eating, usually in the brown or tan foods, BUT even the red colored foods like Stouffer's frozen Italian dishes (like their stuffed peppers etc.) have CC in them. (I check every label and also get the ingredient list from fast food restaurants as well.)

The periods of being SOB would normally occur about four hours after eating such foods and because they were often eaten late, the resulting problem of being SOB almost always occured at night - either awakening me or keeping me from going to sleep.

Only through happenstance did I discover that I could REVERSE the effects of CARAMEL COLORING by simply taking Vitamin B-6 (and B-6 alone), which then allowed me to breath freely again, and get to sleep - and it has worked great for thirty years!

BUT I never checked my O2 levels during most of this time until the last few years when I was put on O2 at night, and to my surprise, during times of being SOB, my O2 was higher than normal - as high as 98-99% - AND the O2 I was on was doing nothing to help - and might have been making it worse! (Today I normally remove the O2 cannula until the B-6 works.)

BUT once the B-6 does whatever it does and I can breath easily again (usually within 15-30 minutes), I check my O2 level and can see it has dropped to 94%, or even much lower, and then I fall to sleep.

I know this is only anecdotal account, and solution, and it is certainly counterintuitive, but it has never failed ME yet – though I do have to take more B-6 today when the trouble begins to get the same incredible relief (about 500mg today vs 100mg three decades ago) .

I really hope this helps.

JPPL

Dmactds profile image
Dmactds in reply to JPPL

JPPL,

I'm a tremendous believer in Niacin (B-3) and wondered if when you say you take ONLY B-6 does that mean to exclusion of any OTHER medicines or vitamins? If so, do you think they would defeat the purpose of B-6, or do you mean to say you only take B-6 because you feel that's all that's needed...?

Hope to hear more...,

Regards,

Duncan

isunjic profile image
isunjic

I have a same weird symptoms. I get tired very quickly. I even had rhabdomyolysis after running for 10 minutes on that machine while feeling bad and while being hooked up on those EKG and oximeter wires a few years ago, and I have been in hospital for one month and i was released with unknown origin of rhabdomyolysis. Symptoms usually disappear when laying in hospital for a few days and normalize.

A few months ago I ended up in a hospital because of severe hypophosphatemia. Phosphate went back to normal after 2 days in hospital without any treatment. All results very normal, and their conclusion was that I am having chronic "Respiratory Alkalosis" caused by breathing too much air, as that causes drop in CO2 and loss of phosphate and as breathing level controls blood pH and as phosphate is main buffer for blood pH and it is also critical component of ATP (the only source of all energy for every cell---> glucose+phosphate is ATP, and glucose+oxygen+ATP is even more ATP, or you could say Adenosine + 5 molecules of Phosphate is ATP, or AMP+one molecule of phosphate equals to ADP, and ADP+1 phosphate is ATP...) and phosphatase is crucial for building DNA (as most of DNA is phosphate and some sugar, nitrogen, hydrogen and oxygen) (take a look at Wikipedia for nucleotides), that causes severe lack of energy for cells and dis-balance of pH which can cause cellular death and coma. They told me to breath in paper bag, that is to breath in air with concentrated CO2 and stop CO2 loss, as CO2 (bicarbonates) level is crucial to normalize everything.

I have same problems with my own oximeter showing me sometimes when I feel sleepy me O2 saturation of 80% and sometimes when I feel OK it constantly shows 99% and when I go to Emergency Room and they take arterial gases it shows O2 sat of 99,3%, high alkalosis, and severely low CO2 levels, and very low Phosphorous, and sometimes just a bit tiny lower potassium. I feel stupid too as doctors don't really help me at all. They tell me I breath too much oxygen and that I am "TOO HEALTHY" and that that much me psychological condition, even though I went to psychologist while in hospital and he told me that i am psychologically fine and healthy.

Which is weird I do not have panic attacks and I am very calm. I breath thru my nose and I breath slowly and which is weird when I feel bad I breath even more slowly as if someone is sitting on my chest. I started drinking a lot of regular coke as it is completely made of Phosphoric Acid and I take Vitamin D3 to increase absorption of phosphorus from coke. That helps a lot but I still get those symptoms a lot and it is in 95% of cases when I get sleepy in the evening or sometimes in the morning when I wake up. It is, it seems to me, that I get worse in periods when brain is shutting down and as brain consumes most of oxygen and energy. Also it gets worse half a day after running. Perhaps this is some condition smart people have as my IQ is over 140. They did bone density test in hospital and everything is more than fine....

But with every energy consuming act, this is awkward to say, even sex, and running increases severity of symptoms. I guess I deplete phosphorous. Also, when I eat too much sugar I get those symptoms as well, because more glucose in your blood more phosphate your cells need to use up that glucose to produce ATP. Even from taking amino-acid supplements I get worse, as it seems everything that speeds up energy usage and mythosis gets me feeling bad. i have been looking on Wikipedia and it seems that level of phosphate in the body is controlled by stem cells in our bones, as they secrete FGF-23 (fibroblast growth factor 23) but very little is known about it, as it is newly discovered thing, and it controls levels of Vitamin D, it controls how much phosphate intestines absorb, and it controls how much phosphate kidneys are eliminating.

I am truly, sorry for rude words, pissed of as this is destroying my life. I have been into sports for my whole life and now I get tired all the time, and all that with 32 years of age.

I did some research that respiratory alkalosis can be caused by asthma, but I am not sure how, and weird thing is I have had severe asthma up to when I was 9 yo, and then I guess hormones and puberty kicked in and i lost asthma.

If anyone has any suggestions or if some of us share some similar previous diseases like asthma or what ever, maybe we can eliminate some of causes because I don't thrust doctor at all anymore. i had to figure out myself that problem could be in low P, and I had to insist every time that they check for P levels as the usually check for all other electrolytes but now P levels... and I had to suggest to them that it could be respiratory alkalosis as I knew from before that i had often high blood pH while ending up in ER constantly.

I am afraid to breath in plastic bad when my oximeter shows low O2, but when they take arterial O2 it shows as too high. And I cannot stop breathing at all...and when I feel bad I breath too slow and shallow and with many pauses. So I am not sure if low P is caused by too high respiration rate.

Hope this helps someone, as I did massive amount of lab results and it is free... It is I guess good that medical care is free in my country, Croatia, as I would go bankrupt if I was in the US. But still if someone has any suggestion what to look for further, I am desperate to try.

Sarahem1965 profile image
Sarahem1965 in reply to isunjic

Thank you so much for this very interesting and helpful post..You medical report there is a lot different than any other I've ever heard.. good luck with it all..

in reply to isunjic

If you are overbreathing, you could check out this book: "Breathing Pattern Disorders and How to Overcome Them" by Dinah Bradley.

Physiotherapist that specialises in respiratory issues, like this place but in your country breathingworks.com/ . On that website they also have an online test to see if that might be your problem.

Basically, if you are over breathing you need to re-train yourself to breath through your nose and into your belly (not into your chest), the book teaches you how to do this but a physio would help alot more cause they will guide you through it.

Becca1111 profile image
Becca1111 in reply to isunjic

Are you still I've on here? Have you heard of Periodic Paralysis? I was diagnosed with this and can relate to your symptoms. Severe weakness after exercise, shortness of breathe because my type affects myour heart muscles as well. Its genetic, so I was born with it but symptoms didnt peak until a year ago, at age 27. Its basically a genetic defect within your muscles which prevents your muscles from carrying potasium from one end of the muscle to the other. There are certain forms that have more to do with sodium than potasium but any activity that lowers blood potasium (exercise, carb intake, cold weather, and a lot more) triggers an attack.

Anyway, even if you don't have THIS, maybe it could help you out narrow it down.

mark9009 profile image
mark9009

Yes this is very common. My SATs are 95 to 98 but can get breathless bending over to tie my shoes. Hang in there.

openthedoor profile image
openthedoor in reply to mark9009

Im also right there with you. Im at a loss. good Sats but cant breath. Helpppp what can I do to get them to believe me. I really cant breath.

lindawaters profile image
lindawaters

very breathless pain in ribs but oxygen levels good

helena_18 profile image
helena_18

I have had the same problem for years to the point that light housework etc am so breathless . I feel lazy as no energy to do anything. However after many years mentioning this to my GP was eventually referred to a respiritery consultant.

diagnosed with 3 types of dysfunctional breathing --- explained to me that my oxygen levels are fine but I have love carbon dioxide levels because of not breathing correctly,

oxygen is carried by heamoglobin in the blood to the organs and muscles. It is released when it passes through the lungs where there is high levels of carbon dioxide, A chemical reaction happens and the oxygen is released from the heamoglobin to travel to the organs and muscles.

consultant said this is very debilitating , i have to have breathing and kung rehabilitation.

I hope this helps as its not easily recognised .

best wishes

helena

helena_18 profile image
helena_18

oops typos -low carbon dioxide and lung clinic lol

liz52 profile image
liz52

Having about the same issue, had a little scare had to go to the er with chest pains and shortness of breath, I have copd but my ox. level always fairly good. I was admitted and had test ran and more breathing treatment elevated blood test caused me to have more test, the end result on discharge was acute copd exhasberation(sorry spelled wrong) I go to another doctor on tomorrow and another doctor 27. I am now wheezing short of breath more steroids and breathing meds and nebulizer,,,,,,,,,,I don't understand......it is all so confusing. hope you feel better soon

Sarahem1965 profile image
Sarahem1965 in reply to liz52

Hi liz52... Did you ever get any better?

Redwoodcoast profile image
Redwoodcoast in reply to liz52

I feel for you , for twenty years been on every med out there, sometimes feel like dying of heart attack and chest pain like someone is pushing on diaphram withboth hands but oxygen levels at 99. I am on singular, Flovent , xopenex symbacort and could not function in the cold winter or spring without them. When I go into the cold or sneeze hard,cut wood or have any more then normal sex, I have Breathing attack right then or in the morning , I know it's coming, my chest gets tight and I am always like great ,set myself off again. Legs will be weak and tired and it just shuts my life down. But there is hope if you have not tried it , almost a miracle for me and my mild copd it's called Kenalog a mild steroid injected into the butcheeck, talk about a miracle 20 years of bull gone, so nice having a break from the lung disorder handcuffs. Supposed to get shot every 3 months 60mil but it last almost twice that for me. I can feel symptoms coming back about 5th month so make an appointment, and I just made one today for fri sitting here suffering big time and spring is here to and the pollen makes it worse, Thank god for the shot and the relief it brings, a few small side affects but totally worth the upside. Kenalog. 40 my holygrail

Geoff_Tamplin profile image
Geoff_Tamplin

Are there any actual ANSWERS from healthcare professionals, or is this just a sort of blog for those of us suffering from SOB with normal or high O2-saturation levels?

How about turning a nurse, or MD or OD or Respiratory expert to this blog, so they can provide actual useful information?

in reply to Geoff_Tamplin

Better than that Geoff, here you have support & information from people some of whom have lifelong experience of lung conditions and have done lots of research which theyre happy to pass on. Many appear to know more than your average nurse or doctor. BLF also run a telephone helpline you can phone for expert advice from respiratory nurses 03000 030 555. Robin

ed: by the way this is a 3 year old thread - best to start a new one. R

Redwoodcoast profile image
Redwoodcoast in reply to Geoff_Tamplin

I have learned more from these sites and from the study of medicine myself for twenty years then any doctor, I have corrected my doctors so many times it is crazy, some of these doctors are so behind the times and new treatments it's crazy really. Doctors are just people who study hard on their subject, but when they do not keep up with the times what is the point . My doctor actually listens to me now and will ask me what I want, so I do not embarrass them , because they always miss something and at least admit it, good luck with those docs out there

My stats have been between 90and 95 for the past few years all ways breathless even with out a exacerbation they only send you to hospital if your stats are under 88

Eqafuad profile image
Eqafuad

My oxygen level is 99. Sometimes even 100. But i still can't breathe properly throughout the day. I will always take one big hale of air every minute. Help..? I havent walk that much because I'm in the hospital now. So i havent seen any changes yet. Just sob. I met 5 doctors and they all said im fine. My lung and heart are clear, my blood test came out well too.

Gerald999 profile image
Gerald999 in reply to Eqafuad

What medications are you on? Have you been shown how to clear mucus? Are you a smoker? Are you on a nebuliser? Are you drinking much in the way of fluids? Do you normally do much exercise. Have you been diagnosed with any type of lung issues in the past?

Sarahem1965 profile image
Sarahem1965 in reply to Gerald999

Hi Gerald999.... just interested in your post to Eqafuad, the one that ask if he's been shown how to clear mucus.. I haven't, would you mind informing me, please?

Sarahem1965 profile image
Sarahem1965 in reply to Eqafuad

Hi Eqafuad.... did you ever get the help you needed for sob? i know from experience how you can feel by not knowing..

Cataingle profile image
Cataingle in reply to Eqafuad

That just happened to me 2 days ago, i had to rush to the hospital because i had shortness of breath but everything was fine (heart, saturation, blood test)...i wonder what is going on with me... i've been very healthy😔

Caprice123 profile image
Caprice123

I was in hospital over Christmas with heart failure. The echocardiogram showed I had some impairment with the pumping action of my heart. I was swollen up with fluid retention, sky high blood pressure and a dry cough because of some fluid on my lungs, yet the oximeter will show I have good levels of oxygen. When walking, 97 to 98 though goes down to 92 to 94 when resting. However, a blood test showed much lower levels of oxygen in my blood. I think these oximeters are rubbish. Why they use them I am baffled, as they are useless. I really have bad sob, especially if I go out in cold weather my breathing becomes a fight for air and I feel I am suffocating, yet the oximeter will show 98?? I think I will try an oximeter on my wrist over a period of time, as adreafm on this site has suggested. Thank you dear adreafm., your post was very helpful.x

rubyred777 profile image
rubyred777 in reply to Caprice123

I do that also. Never makes sense to me. Yet no one can explain it. My sats will be 95-96 when sitting. When I walk around they are 97-98. Most people are the opposite!  Can anyone explain this? 😊 Rubyxx

Redwoodcoast profile image
Redwoodcoast in reply to rubyred777

This is not uncommon when you sit especially if hunch it puts pressure on diaphram and stops full deep breath , when you stand walking or not you then get full exspansion , I feel so much better when upright and walking.

I also have breathlessness.in angiography test I have 3 coronary arteries blockage 

Pls take care

Ritagreene1 profile image
Ritagreene1

A thing called anxiety

fjpor4321 profile image
fjpor4321

I'm 76 years old, have some heart problems (a small pleural effusion and leaky valved with enlarged left ventricle which cardio says is doing well at present) but have O2 sats in the 98/99 level almost all of the time. Even when on treadmill they stay the same.

About 6 or 7 years ago my SOB began in earnest and came on very suddenly. Checked for stroke - all clear. Pulmonary function within normal limits so went for full day long work-up at a local hospital. Results were either that i dd not try hard enough - NOT!! as had to be asked to stop by technician because i wanted answers - or the condition was neuromuscular in nature.

Had sleep test and other than some very mild problem, nothing to account for SOB. X-rays show collapsed air sacs in right lung with some fibrosis and hemi-diphraghm on that side. Atelectasis diagnosis. Was, for many years, a heavy smoker but quit in 1985 and also had absestosis exposure for a prolonged period of time. Inhalers did not good and now cannot walk, sleep, bathe, do normal routine functions without gasping for air. Insurance will NOT pay for oxygen because O2 levels are not at or below 87.

After 3 pulmonologists, a cardio, neurologist and primary no answers I am at my wit's end. Have had a suggestion for another pulmono doc who is supposed to be up on all of the news and I am willing to try if it could help - also suggested I take all test results to a good neurologist and have him/her check for the neuromuscular aspect - ie something along the lines but not necessarily MS. Guess at this point one more time around the tract wouldn't hurt.

I see here so many different problems but so many are alike, too. Like so many I get tired of being made to feel like a fake when I have always been active and this is a real bummer

Alan4057 profile image
Alan4057

O2 levels, do seem to be a red herring in terms of observable symptoms, my farther who sadly passed away through small cell lung cancer, right upto the day he died, had pretty respectable SATS ......

I myself suffer badly with SOB and my SATS are excellent, I'm pretty much confined to moving over any distance, to a wheelchair, but around the home, I'm move around slowly, using various pieces of furniture to steady and rest myself on route.

My respiratory nurse advised me that, their knowledge and understanding of COPD is more limited, than that of lung cancers......

What a little ray of sunshine she was lol, I find that much of my self care, for want of a better description, is counter intuitive ....

We all seem to respond differently to our own self help routines, I find my dietary regime the most helpful , eating little and often and keeping the meals healthy and easily digested.

More often or not the information on sites like this, is far more helpful and informative, than anything you'll likely receive from the health professionals .

When I deal with them, I feel like little more than a tick sheet .......

Whilst I'm not suggesting , that any of us fly in the face of medical advice, equally so, your intuitive actions and treatments, shouldn't be ignored.

I know for sure that I have prevented my own hospitalisation , on more occasions than any medical staff ever have.

I use a bi pap, which they complained and said I wasn't using it properly ie. Not the 8 hours per day prescribed.

I stupidly mentioned, that I get a lot of relief from it, to regulate my breathing during periods of very bad breathlessness ,..... Saying that , was like a red rag to a bull lol, I got read the riot act and told it was in my mind and that the machine couldn't do that lol..........

So I checked out the respironics web site only to find a small hand held unit , working in the same way, for the exact relief I'd described, I drew their attention to this, and lo and behold, got one to try out.

Is it a fix all...... No

Does it help ...... Me, yes and hopefully others too

Argue your corner, no one else will, is probably the best advise I'd give anyone, don't take no for an answer, good luck and breath easy x

catran profile image
catran in reply to Alan4057

i use it 12hrs is that too long? very short of breath.

Alan4057 profile image
Alan4057

Please excuse typos ooops

andreafm profile image
andreafm

Thanks for that Alan4057....the breathing pattern seems to be a big problem for me and I was diagnosed at Royal Bromptom with Diaphragm Dysfunction and dropping oxygen levels at night..... the diaphragm doesn't go in and out at the right time. Making breathing extremely uncomfortable......I use an NIV [Non Invasive Ventilator] and like you am using it to regulate my breathing pattern during the daytime + I am also getting dropping oxygen during the day when I rest. I keep explaining this to my consultants but it's virtually ignored and so I am left struggling.

What is the name of the hand held unit you talk about as this might help me

:D

Alan4057 profile image
Alan4057 in reply to andreafm

@andreamfm the unit is called Vita Breath and is a Philips product, it's ideal for storing in a bag whilst out, I've teamed mine with a face mask, better not say that too loud lol, I'll probably be told I'm wrong for doing so, but what can I say, it works for me and is ideal for the rare journey from home 👍😄

I hope this is of help

andreafm profile image
andreafm in reply to Alan4057

Thanks again Alan4057...had a look and seems ideal for me. I've just written a letter to my consultant stating my concerns that not all my breathing problems are being dealt with. I have an oxywatch which provides graphs on my computer with my spo2 levels over hours either awake or asleep. So have included a few of those for him to look at and a request for an appointment....fingers crossed. Thanks again 😄

Alan4057 profile image
Alan4057 in reply to andreafm

@andreamfm

Oh great, sounds like a really positive move, far too often, for whatever reason, our concerns go unheard, this however sounds like a fantastic move in the right direction, don't be fobbed off with half answers, you're the one suffering, you know your own body. I do hope it gets you the answers you seek, mention the equipment too, your respitory team, might be able to get you one......

If not, whilst not cheap, they are in the affordable range.

The very best of luck, I'll be interested in your responses , fingers crossed 👍👍👍

Dee233 profile image
Dee233

I am newly diagnosed with copd stage 3. My understanding of sob is in relation to airway obstruction. My stats are oxygen levels 94.

Hope this info helps.

Dolphins7 profile image
Dolphins7 in reply to Dee233

Best of luck to you. I too have that dastardly disease and my doc warned me last year I would end up on oxygen if I didn't quit smoking, guess what? Yep 24/7 now. It stinks, as I have good days and bad, and no one to blame but me, I quit smoking for four months and now I have gone back, bad decision as it seems harder now than ever to quit. Being on oxygen should be motivation itself but I actually think it hurts cause I can go in one room and puff then come back and plug in. Must quit, must quit! May the lord watch over you.

lstjean profile image
lstjean

High CO2 is related to COPD which creates shortness of breath. Low CO2 can cause shortness of breath as well because we need to maintain a specific amount or range. It can cause a myriad of problems. Chronic overbreathing is a culprit and a huge amount of us do it and we don't realize it. Shoetness of breath, fatigue, muscle weakness, headaches, dizzyness, cognitive issues. Google it. You'll also find breathing techniques like Buteyko to help. Relaxation techniques and others to help maintain CO2 levels. I have good O2 levels and suffer from many of the above symptoms. Not all docs are on board, so be prepared. A speech and language pathologist treats me, along with a vocal cord disorder.

Susansheila1421 profile image
Susansheila1421

Hi my name is Sheila I was diagnosed with COPD many years ago I am now 76 nevertheless my oxygen level is 98 - 100 at times I find it very hard to breathe specially when I'm doing anything I am on a blood pressure pill and I am sure that is what's causing this shortness of breath it is called courteous and I don't know if anybody ever heard of it but if you did please let me know thank you i

Batbara profile image
Batbara in reply to Susansheila1421

Hi, I take metoprolol for high blood pressure and I do believe it make my breathing worse.

I have never heard of a blood pressure pill called courteous. Is there another name that used for it. Is it a beta- blocker ?

Maura442 profile image
Maura442

Whenever I feel short of breath I know I have not been exercising enough. I then do only 10 minutes of HIIT exercise three times a week and that takes care of my breathing problems. Also, try eating a breakfast and lunch of a pound of spinach with salt free, sugar free, oil free dressing.

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