my biggest problem now is out of breath low oxygen very little energy Doctors seam to put it down to AF But I am not sure

[Ronzy]

sorry got carried away

My oxygen is only 88 when I am sat down wish I could afford to go private

I know lots of people with af which are not breathless all the time as I am.

anyone here with AF

[SheffieldJane]

Oxygen starvation is the worst feeling. I had a spell of it a few years back and I found it really scary. I had tests but nothing was found except something minor in my Aortic valve that they occasionally monitor. I used to sleep on stacked pillows with a fan blowing in my face. It was never explained to me. I wondered if it was side effects of Pred. Or Doxazosin or Atenolol for raised blood pressure. I know that Codeine causes breathlessness in me. It just passed when my Pred dose got lower. Even getting a blocked nose makes me panic slightly now, this of course brings on breathlessness.

I think you need to tell your doctor how anxious this is making you. Could you get a second opinion? Do you have a Cardiologist? You should not have to suffer in silence!! X

[Ronzy in reply to SheffieldJane]

Thanks Jane ,beginning to despair a little don’t know what the hell to make of misen

So up and down even though the day. On occasion felt that good At night like on a high

Hoping I have turned a corner 🫣 but no 🤨 think doctor is also bemused all they think is right is AF and I’m not sure of that misen. Very disappointing. To say how I was before covid . All the best to you

🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀

[SheffieldJane in reply to Ronzy]

Hello Ronzy. I think of you from time to time and wonder how you are. I know that high feeling at night when I am trying to get to sleep. I think it’s my Adrenals going bonkers, I can hardly keep my eyes open in the day time sometimes.

I am glad you get good times that make you wonder if you‘ve turned a corner, I do occasionally. Covid made me much worse too, I seem to have a permanent cold now.

Don’t despair, come on here when it’s getting you down. There is always somebody to talk to. All the best to you too Ronzy! X🍀🍀🍀🍀🍀🍀

[Ronzy in reply to SheffieldJane]

Thanks Jane I’m lucky I sleep quite well unless something is really bugging me and can’t let it drop 😵‍💫 I’m down to four pred now but don’t feel all that much better

I suppose it is that other problems pop up. Arthritis is getting worse. He’s a bugger is Arthur finger shoulders arms manly. Get puffed out in no time doctor seams useless. Sent me for a spirio test. Know problem whilst I am sat. Hey Ho.

Merry Christmas Jane. 🌹🎉

[SheffieldJane in reply to Ronzy]

Merry Christmas Ronzy! 🎄🎅🏼 I hope 2024 is really your year. 🥳x

[Ronzy in reply to SheffieldJane]

Thanks 🤪

🌹🌹🌹🌹🌹🌹🌹🍀🍀🍀🍀🍀🍀🍀🍀

[SheffieldJane in reply to Ronzy]

Listen to everybody about your oxygen levels. Doctors don’t seem to chase us these days!!! 🍀🍀🍀🍀🍀

[Sophiestree]

88 is very low. Has the GP not taken that seriously?Does it go back up quickly?

I think you need to speak to someone.

Do you have any other issues? Infection?

[PMRpro Ambassador]

If you have a resting oxygen sats of 88, your docs need to investigate and deal with the AF better. And if it lasts more than a few minutes, you need to call 999 and tell them difficulty in breathing and how low your oxygen level is just while sitting - because it will be even lower when you get up and try to do anything,

It all depends on how severe the AF is - I can feel quite breathless during an episode and that does persist for a while after the heart is beating properly again. But my sats are NEVER under about 92.

At least call 111 now and get advice, if they aren't available, 999. And tell us how you get on.

[Ronzy in reply to PMRpro]

Thanks for that I probably will ring A&E At sometime when there not on strike.

My so out of breath and low oxygen and jelly legs ready worries me but strangely no high heart beats,as I ware an smart whach all the time.

[PMRpro Ambassador in reply to Ronzy]

A&E are NEVER on strike, they are not allowed to be. My daughter has been working all the way through.

But ringing A&E isn't much use, if you RING it needs to be 999 or 111 who may then decide you need to go to A&E. But paramedics can also arrange an appointment with your GP even if you can't get one.

That low blood oxygen level is putting all your organs at risk because they can't work without oxygen at the right level. That low blood oxygen is probably part of why you are breathless - that is the body desperately trying to get it higher. You MUST get medical advice and as soon as possible - you may need oxygen to get things working again and they need to find out WHY you have low oxygen and sort it out.

Please call 999 NOW. I won't stop worrying until you tell us that something has been done.

[Ronzy in reply to PMRpro]

😱😵‍💫i am going to scarbough on friday see air may help a little i am going to be very carefull , will use my little mobillety scouter this time if i get any worce i will ring 999. Thankyou ever so much for your help and concern.

😍🌹🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀

[PMRpro Ambassador in reply to Ronzy]

Scabs has a good ED - won't be QUITE as good from Friday as my daughter is off to the rugby in France. I'm still worried about you though.

[Ronzy in reply to PMRpro]

My doctor keeps telling me I’m not as bad as I think 🤷🏽‍♂️ but she’s not in my body

I think bottom line I don’t hold too much hope for A&E 😵‍💫 this is an

but i cant believe how much up and down i am.

Day to day hour to hour 😵‍💫 but it is wurring

it sticks with me when i went in with brurry vision when i was on high dose pred

all he said was how many fingers am i holding up.

. Your fine 😱😵‍💫🤷🏽‍♂️

[Ronzy in reply to PMRpro]

does your daughter work there in A &E.

[PMRpro Ambassador in reply to Ronzy]

She does - but on 2 weeks well deserved holiday as of today. Going to the rugby and meeting me

[Sueloucam]

You should be very concerned with oxygen saturation below 90%, do you have other respiratory problems. You should not wait , go and see someone.

[Pixix]

I was hospitalised when mine was that low!! Suggest you get to A&E quickly, & get sorted out! As for Scarborough, your breathing is more important than a day out, Ronzy!!!!!

[Ronzy in reply to Pixix]

But what did they do for you ,I have been in Pinderfield and Leeds but did not do owt

[PMRpro Ambassador in reply to Ronzy]

Yes - but was your oxygen level that low at the time?

[Pixix in reply to Ronzy]

My reply is the same as PMR Pro!! When mine was that low I was rushed to urgent treatment. Are you telling us that you went to both those hospitals, & at that time your oxygen levels were 88????? I was put into oxygen & monitored. They looked for a reason…mine was my lungs. I was admitted for ten days & treated.

[Ronzy in reply to Pixix]

are your lunges better now what treetment did you get

[Pixix in reply to Ronzy]

The problem was caused (they found out) by some DIY we were doing at home. We removed a ceiling, & thought it was just dust, but, in fact, it was horsehair plaster & I was allergic to it. I was at home with what I thought was a bit of asthma but my oxygen levels were getting lower, as the problem was all around me. I waited too long, was sure it would clear & ended up in the Resuscitation area, a scary part of A&E. I was on a ward for ten days, with oxygen & asthma treatment. I’m not normally an asthmatic!! I now have problems with my lungs and need to be very careful I don’t catch infections & we have to shield each winter. I’m not sure this is relevant to your case, as I think you said before you have heart problems & atrial fibrillation. What is relevant is that I put off going for medical help for too long!! Don’t do the same, please, Ronzy!! S x

[Ronzy in reply to Pixix]

What a cop out from my doctor A&E recommended a appointment with a heart and lungs specialist I forgot name for minute to my doctor

What do I get a telephone appointment with nurse 🤷🏽‍♂️ what can they do over phone. My chest and heart get worse weekly. I’m actually toying with moving to another practice but could end up worse. I’m beginning to despair 😫

[Pixix in reply to Ronzy]

See another doctor at your surgery?? Go to A&E again if it’s getting worse weekly. Sounds as if they don’t think it’s urgent, if it’s a normal referral. Perhaps the phone call from the nurse was to find out how urgent it is, & exactly what your problems are,so he/shecan report back. Sadly, the wait to see a consultant face to face is long, months & months. I’m not sure moving to another practice will solve it if you need to see a consultant, Ronzy. If you feel that bad, perhaps you are better off going to A&E again?? Only you can judge the urgency. I know it’s not easy for you, but try& write things down…dates & how you feel, how your heart gets worse weekly…for example blood pressure higher? Pulse rate up? Buy a blood pressure monitor if you haven’t got one, they aren’t that expensive. Just a suggestion or two…or look up the British heart foundation website?

[Ronzy in reply to Pixix]

Thanks Pixix You talk a lot of sense every day I can walk less and less. Getting a lot of seams like angina pains sometimes when I walk even on level.

I think I’ll be forced In soon

A very good friend of mine died last week with angina problems n😢 he has suffered years with a bad heart he was stented up pacemaker etc for years a lovely guy.

Thanks love much appreciate.

🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀

[Pixix in reply to Ronzy]

OK…you say every day you can walk less & less. Have you tried to get an appointment with your doctor, or a different doctor? If the appointment is too far away, you can go to A&E. I’m sorry your friend died, but it sounds as if he’d had a lot of medical help, if he had stents and a pacemaker. Now, I suggest you go & get yourself some help! Other answers to your last message suggested calling 111 or 999…have you done this?? Go, Ronzy, get yourself some help!!!!!!!

[Ronzy in reply to Pixix]

It’s seams hard these days. Doctor keeps saying you’re not as bad as you think you are. 😱. I sometimes despair I used to be so fit before I had what I thought was a mild dose of covid 🤨

But it’s getting harder and harder to do exercise.

I might try the male doctor he was the one that said don’t knead beta blockers as my heart rate was already low. They don’t seam to know if it’s my lungs or my heart.I am beginning to say heart now.

In a way it’s a pity there is usually a wait before you go in then they would see how I was

Yes I’ll do that.

Thanks again

🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀

[Pixix in reply to Ronzy]

Go for it, please! See the doctor! The way I see it…they can do a lot of tests on the heart. I expect you are doing blood pressure checks at home? I am doing these very regularly right now. I was diagnosed with orthostatic hypotension, my heart rate drops significantly every time I stand up, bringing nausea & dizziness & lack of balance. First doctor said I stood up too quickly & explained that we should not walk on two feet. If we had remained as animals & walked on four legs I wouldn’t get the problem. Dismissed the symptoms. The next dr didn’t do any tests, either, & said it was adrenal insufficiency…which was fair, as I was also suffering with that. But I felt it was different. I made a lot of notes. Finally talked to ‘my’ doctor on the phone. Did the blood pressure checks at home. He diagnosed it. I’ve been suffering for 16 months. I tell you this so you can see that health is complex, it’s not always straightforward, but you need to keep going back…& back. Take care! S x

[Ronzy in reply to Pixix]

Flipping heck we’re surrounded by quacks 🫣😱. Strangely my blood pressure

Is the only stable thing ,it’s weird.

Are you getting any wiser to what’s going on for you.

I also have quite a lot of problems with my guts and bowls

I’m also looking in Gird not sure that’s spelled rite

We getting to know some stuff,also more careful with diet.

I’ll keep you in the loop.

Thanks for your help and concern,one day someone will come up with salutations 🤞you take care also.

All the very best 🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀

[Pixix in reply to Ronzy]

Oh, yes, I know what’s going on, thanks. I’ve been diagnosed plenty of times! I have fibromyalgia, PMR, orthostatic hypotension, macular degeneration, trochanteric bursitis, sciatica, plantar fasciitis, hypermobility, essential tremor, osteoarthritis, Raynauds syndrome & a benign tumour on my spine. The only diagnosis not yet confirmed is Ehlers Danlos Syndrome, waiting for specialist. If your blood pressure is stable, perhaps that’s why they are saying you are better than you think you are? Stomach & bowels can be helped by diet, & your GP should help with problems of that area, & Gerd (I think that’s the spelling, I don’t know much about it!) Keep going to the medics, & don’t do too much Dr Googling, you could think you have all sorts of stuff reading the web!

[PMRpro Ambassador]

Just been chatting to the ED daughter - and she says you must get to the ED/A&E. Sea air won't sort it out. Call 111 or 999 and tell them what you have told us.

[Ronzy in reply to PMRpro]

My wife and I love Rugby we have watched most of the games so far. Enjoy. Last time I was in A&E they did nothing that why I am waiting until I get worse

[DorsetLady PMRGCAuk volunteer in reply to Ronzy]

Just make sure you don't wait too long though...😔

[PMRpro Ambassador in reply to Ronzy]

As DL says - don't wait too long - they don't like Seriously Poorly People arriving because they "didn't want to bother you" and it turns out they are really Very Very Poorly as a result. A SATS of 88 should get you at least oxygen until it improves and it stays improved.

[Ronzy in reply to PMRpro]

What is A SATS of 88 please

[PMRpro Ambassador in reply to Ronzy]

You said "My oxygen is only 88 when I am sat down". That number on your oximeter is called the oxygen saturation, medics call it your sats level. Sorry, shouldn't have said it without explaining.

[Ronzy in reply to PMRpro]

It has got to 96 eventually but minutes I start to walk around it plummets

Up the stairs down to 77

Been to nurse this afternoon for a routine blood test.

Mentioned my b oxygen problems to here as I felt pretty ropey walking 200 yds

From car after trying a couple of different finger tests finally got a reading

She suggested I see doctor tomorrow.

I said I was concerned and contemplating seeing A&E she said she would be concerned if I was struggling to put a sentence together 🤷🏽‍♂️

Sorry should read 96 eddited it now.

[PMRpro Ambassador in reply to Ronzy]

IMHO she should have been concerned enough to fetch a doctor. Not being able to complete a sentence isn't the same as very low saturation - and no doubt you were sitting when she looked?

[Ronzy in reply to PMRpro]

mm thats the problem they always take it when i am sat and been sat quite a while

at one time at surgery the man docter could not get a reading so he got me to run my hands under the hot tap

[PMRpro Ambassador in reply to Ronzy]

Despite you telling them it falls on any exertion - not good enough. You need a paramedic, they usually have their heads screwed on the right way!

[Ronzy in reply to PMRpro]

i know your wite but i seame a little scared of crying wolf to often but i will be carefull last time i was a scarb,

iwalked up castle hill not this time lwill take care. Pushed myself too much in past

ill keep you all informed 😵‍💫

[Ronzy in reply to PMRpro]

One thing worrying,read today in paper about some nurses druging old patients to death to make life easy for them 😤 I know most nurses are the salt of the earth

But also got me thinking it’s difficult to know what they are giving you and what there not. I will want to monitor my own drugs as much as possible

Last time I was in the guy at side of me was begging them for some paracetamol 😫

A friend of mine was in hospital for a few weeks. He was on the wrong medication

I think there relatives should be given a list of there medications 😤

End of rant 🫣

[PMRpro Ambassador in reply to Ronzy]

That is utter cobblers and some sensationalist journalism. There are pathways for end of life care - one is called the Liverpool Pathway, but it is NOT to kill the patient, it is to make sure they are not suffering on the way. Any patient who is restless at that stage is most likely in pain. It is notoriously difficult to get the doses perfect and patients react differently. But personally - I don't want to be in pain and if I am dying anyway, if I go a day or two sooner, that is OK. I had enough of that as my husband was dying WITHOUT adequate pain management and sedation because he was not on a pathway.

[Ronzy in reply to PMRpro]

Sorryeee 🥲

[PMRpro Ambassador in reply to Ronzy]

The only apology needed is from the "journalist" who thought it a headline. Yes, there are the Lucy Letbys of this world - and she had been spotted by colleagues as a "wrong 'un", had the administrators listened, but they are very few and far between,

[Ronzy in reply to PMRpro]

I whet to A&E not much joy I’m afraid apart from they aare going to consult me doctor about referring me to a cardiologist. It’s wired. Now I’m beginning to think my chest/ lungs may be very problematic to my breathless. Anyone think pmr can effect lungs.

Iam going to try knocking my beta blockers off altogether as my pulse is so low

48 resting

[Ronzy in reply to PMRpro]

No joy with A&E came up with nothing only said they was going to surest to me doctor about referring me to an cardiologist,since had a phone call told her how bad it gets .

So got a referral 😫 to doctors nurse to investigate my breathing 🤷🏽‍♂️ I think I am going to have to man up a little. 🍀🍀🍀🍀🍀🍀🍀🍀