Short of breath

[Duff1953]

Can anyone tell me why I am so short of breath when my stats are fine duff

[Katinka46]

Me too. I am very SOB all the time. Just walking across the kitchen and I am struggling. But my SATS are more or less all right. And oxygen has no effect on breathlessness per se. It’s just the way our bodies react differently. It’s highly individual. Bit of a bugger. There are those on oxygen who are not breathless.

I have had asthma since I was seven (no longer a significant problem, CTED and OB now predominate) and I was taught good breathing techniques. So I use those and summon up all my relaxation methods to cope.

Sorry not to be able to help you.

Kate x

[Duff1953 in reply to Katinka46]

I think that I will have to get used to being this way some days it just feels very grim thinking is this way that it will be thank you for your reply duff

[Katinka46 in reply to Duff1953]

A physio told me not to exceed Borg scale 5. ie When I got that breathless I should stop and rest. Hmmm... Tricky one that. I’d never get upstairs.

[Dids49 in reply to Duff1953]

Duff1953 I feel exactly the same. I also feel as if my outer upper body area is too small for the inner, everything is so tight and seems to restrict my breathing even more. It is very grim feeling this is as good as it gets. If I can get any medication changes I will let you know. Not sure what we can try next.

[Duff1953 in reply to Dids49]

Thank you duff

[sueedw in reply to Katinka46]

Hi I am also breathless and my stats are fine like you I would like an answer my respiratory nurse has no answer and I feel she doesn't believe me. Does someone has any answers please.

[Caspiana in reply to sueedw]

At the onset of my lung disease (Katinka and I have the same lung disease Bronchiolitis Obliterans) I got breathless but my sats stayed high. It wasn't until my disease progressed that my sats began to drop upon exertion. Have you ever had a six minute walk test to see if your sats drop when walking continuously for six minutes? Do you have your own oxymeter? Does she take your sats after you have been sitting and you are not breathless? Everyone is different, even if we have the same disease. It's such an individual thing. I am sorry your nurse is so uninformed and unhelpful. I can only imagine how frustrating it is not to get some understanding from people who should be "on our side". Hang in there sueedw . I hope you let us know how you are doing from time to time. Take good care.

Cas xx 🌿🌼🍃

[Katinka46 in reply to Caspiana]

Hmmm.... Tricky one. All my 6MWs are stopped after a short time because my heart rate shoots up. I am never allowed to go for long enough for my SATS to drop. They did on two occasions at the PVDU at Sheffield where they use the incremental shuttle walk instead and allow it to run to the full course. All their patients will have raised heart rate so they ignore it. On those occasions my SATS were in the 70s. A nurse asked if I was on ambulatory oxygen.

Hmm....

K xxx

[Caspiana in reply to Katinka46]

Hi Kate. 😁

Our lungs are so hyperinflated I understand the hesitation (?) they may have on putting you on ambulatory oxygen. My doctor says use it when ambulatory only but not more than 2LPM. He thinks the risk of CO2 retention is pretty high. They have never stopped me during the 6MWT even when I thought my heart would burst. They told me to keep going, unless I was going to faint. 😒 I think they really wanted to see how low it would get. But the thing is as soon as I sit my O2 rises pretty rapidly (luckily). After my walk test I remember the doctor scrambling to take blood from my artery because they wanted to do a blood gas test when I was at worst. Your sats in the 70s is very low. I wonder if you can't have low flow O2 like I do. xx 🙋🐕

[sueedw in reply to Caspiana]

Thank you Cas, I am always tested sat down and not after walking when I think I should be monitored.

Breath easy every one

Xx

[CDPO16]

I have very severe emphysema and late onset asthma. I am breathless on the slightest exertion but my sats are reasonable. It is hard to come to terms with, especially if we have previously led active lives. Some days are worse than others but I find when I can do something within my limits it helps by taking my mind off the breathlessness. I hope that are able to find something that suits you.

[Duff1953 in reply to CDPO16]

Thank you have my appointment with consultant next week so I will try to explain to her how bad I feel take care duff

[Katinka46 in reply to Duff1953]

An additional complication for me is that because of my crazy history (long story, which I have written up and has been read by 52 members here) I am very stressed when I see doctors and the adrenaline — bizarrely — ‘normalises’ my breathlessness. So doctors don’t see me SOB.

K x

P.S. if you would like to read my story, very long, in parts technical, bit like a medical detective novel, PM me. It is used by a doctor in Edinburgh to teach doctors about errors in diagnosis.

[SquirrelsHolt in reply to Katinka46]

Sorry to butt in on your conversation but I've followed your medical account of mis-diagnosis after mis-diagnosis over several years,however it must be a small feeling of achievement,to know that the Respiratory Consultant in Edinburgh is teaching new doctors,how errors in diagnosis can and do happen! Not that it helps you as such and I hope you are able to enjoy this warmer weather. Regards. x

[Katinka46 in reply to SquirrelsHolt]

Thanks SH. Yes. I was very impressed by his reaction. I read a paper by him about cognitive bias in the medical community and it happened to have his email address so I emailed him with my account. He got back to me on a Saturday afternoon. And asked if he could use it. I am fine now, dx wise with my LLC.

Thanks for your support and friendship over the years we have been here.

I hope all is as well it can be for you

Love

Kate xxx

P.S. I think I should have PMd this reply to you. Sorry Duff.

[garshe]

You would Benefit from a Pulmonary Rehab course. 6 weeks twice a week .one hour exercise one hour talk. Teaches breathing tecniques which help breathlessness. I am half way through my course at present and my fitness etc has greatly improved. Ask your Doctor or COPD nurse to put you on waiting list..

[ceris in reply to garshe]

I have just finished the pulmonary rehab course, was the best thing my dr did to refer me, it teaches you a lot about breathing and the talks are very informative, you also meet a lot of people who are in the same position as you and I really enjoyed it, well worth asking your dr.

[eccentricrecycler]

My continuing breathlessness with good SATS turned out to be heart failure which can cause the same symptoms - took several years to diagnose because of the overlap with my lung problems

[Katinka46 in reply to eccentricrecycler]

Well, yes, I also have chronic thromboembolic disease which more often than not causes pulmonary hypertension. ie Heart disease, which would account for my increased heart rate but there is some dispute among the doctors about whether I have. PH. Tricky one. I had to pull out of PR because it was making my symptoms worse, PH is contra-indicated for PR.

K

[sarcoid123 in reply to Katinka46]

Hello. I have pulmonary hypertension as a result of pulmonary sarcoidosis. I have done pulmonary rehabilation twice, but must admit I have wondered if it is OK to do it with PH. Where have you read PH is contra-indicated for PR.

[Katinka46 in reply to sarcoid123]

I think it was a paper about PR but it was some time back. I think PR is fine for stable PH but you should ask your consultant. What seems to happen to me is that my PH is made worse by exercise. And my symptoms worsen including chest pain. The physios running the PR weren’t happy for me to continue.

K

[sarcoid123 in reply to Katinka46]

Thank you Katinka46

[knitter]

Yes my SATs can be in the mid 90s, and I can still be breathless and struggling .

I don’t know if it’s something to do with the oxygen and carbon dioxide levels being out of synch .

[Collie4]

I have the same problem. My oxygen levels are fine, ( i use oximeter most days), but i still have shortness of breath. Breathing exercises ( and pursed lips exhaling) helps , and walking gently in fresh air. Exercise helps you through the breathlessness, i find, as long as its gentle and you rest often. I hope you feel better.

[Duff1953 in reply to Collie4]

Thank you take care duff

[Collie4]

Also i use a spacer ( aero chamber) , to use ventolin, its more effective than just the small ventolin inhaler.

[fidgetandscooter]

My sats are fine as is my pulse rate. My bp is a little high. But as soon as I move I struggle to breathe. I was in hospital shortly before Christmas with an exacerbation. When I came out I was on oxygen for 17 hours a day. We are now at a stage where I am on ambulatory oxygen, but the tanks on wheels are so blasted heavy I hardly ever get out.

In February I had an echocardiogram. I know the results show that I have a degree of pulmonary hypertension. I have been waiting since then for a cardiac appointment.

I think sometimes they keep us in the dark about our symptoms, so I have bought an oximeter. To my knowledge it might be just a change of tablets, but I know it's frustrating.

I would be inclined to ask for an echocardiogram because once our lungs get to a certain stage the heart has to work harder to keep our lungs going.

[Pantani]

If you have emphysema then the problem experienced with shortage of breath is the problem of getting air out of the lungs. If this is t happening then you cant get air in. You need to try pursed lips breathing, breath in through the nose then breath out through pursed lips. This should be longer than the in breath. You can panic when short of breath and this makes it worse, pursed lips breathing can therefore be helpful in relaxing you.

[Catnip]

Greetings

I have the same problem but I'm assured by my physiology that breathlessness and levels of oxygen saturation have nothing to do with each other. I have oramorph to help with the breathlessness and I suppose that we all have Ventolin or something similar to open the airways. I do have oxygen too, at 8 lpm now (from 4 litres two weeks ago).

I guess we do our best. If I go more slowly, I'd never catch the slugs I chase at night...

Cheers

Catnip

[hallentine47]

I have the same question. I have severe Emphysema COPD and 23& capacity but my stats are good at 97% Oxy most of the time. I am on countless medications for High Blood pressure and Blood thinning Riveroxaban having had minor stroke and AF. Every time I see my GP which is often he puts me on another pill!! No one can answer the question. I struggle with every little task becoming breathless doing very little. Good to know I am not alone in these symptoms.

[dart123]

I have had copd for years , sats are fine , became very breathless two weeks ago, needed hospital check after tests , they think it could be heart failure , waiting on a echoscan to be done , having 40 mg of ferusomide daily until scan results, hope this is of help to you , will let you know the outcome .

[vittorio]

..YES , I KNOW ! , - I HAVE THE SAME PROBLEM, BUT AS I HAVE SAID BEFORE HERE , THESE DAM NUMBERS AGAINST , HOW YOUR ACTUALLY FEELING ARE JUST THEORETICAL NONSENSE - ITS HOW WE ACTUALLY...... FEEL ....... THAT IS MORE IMPORTANT . AS TO WHY , I HAVE NO CLUE . I HAVE BEEN IN HOSPITAL 31 TIMES IN ABOUT TEN YEARS , AND EVERY TIME , WHEN THE AMBULANCE STAFF DID THEIR CHECK = UPS - ACCORDING TO THESE WRETCHED FIGURES = ALL WAS WELL !.... LIKE HELL IT WAS ! - I WAS STRUGGLING TO BREATH, AND THE VERY LAST " ADMITTANCE " TO HOSPITAL , IT WAS FOUND I HAD PNEUMONIA OF ALL THINGS ... SO MUCH FOR THOSE BLASTED FIGURES !!.......= LEAVE THEM TO THE DOCTORS TO PLAY AROUND WITH ! ! ... SORRY I CAN'T BE MUCH HELP - ITS JUST A MYSTERY .., BUT GOOD LUCK - LET YOUR BODY TELL YOU WHATS HAPPENING - NOT NUMBERS ! - IT KNOWS BETTER !!

[Duff1953 in reply to vittorio]

Thank you you are so right the numbers in my case definitely do not match how I am feeling take care duff

[Luppe]

Like the others, I'm not sure the number paint a correct picture. My specialist got a new spiromtery machine and my numbers improved significantly. I congratulated them on the equipment but then showed them on my dear old Apple app that my average steps had dropped by 50% over 12mths and gave numerous examples of the things I now struggled with. The challenge is to keep "doing" whatever you can, as long as you can - use it or lose it I guess. Having said that, breathlessness is a particularly rotten feeling and difficult thing to live with.

Sorry, that won't help but you are surrounded by a bunch of brave folk who know exactly how you feel.