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Breathlessness

morgan45 profile image
9 Replies

Breathlessness

Does anyone else still get breathless on exertion.  I walk every day (2 young dogs) through sand dunes so reasonably fit, average weight. If however I take on a massive sand dune for example I seem to get excessively/worryingly breathless. I know our anaemia is megablastic but my doctor won't have it that the breathlessness and PA are linked. I have had spirometry test and lung function is great.

Anyone have anything to share and maybe shed some light

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morgan45 profile image
morgan45
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9 Replies
morgan45 profile image
morgan45

Sorry just to add, my doctor says that because my bloods are within the range that the breathlessness cannot be attributed to the PA. I find that I don't have to be officially off the range anaemic for symptoms to return.  They tend to come back in stages as my system gets lower. 

Gambit62 profile image
Gambit62Administrator in reply tomorgan45

Suggest that you try to get your GP to look at the PAS website - there is a section specifically aimed at health professionals.  The symptoms of PA are NOT caused by anaemia they are caused by an underling deficiency in B12.  B12 is key to a number of systems including regeneration of cells - which is where anaemia comes in.  Another key process is maintaining the insulating layer around nerve cells - hence the neurological symptoms. 

 Whilst breathlessness if often associated with anaemia and not enough oxygen getting to the cells this does not appear to be the only mechanism by which a B12 deficiency could cause breathlessness.  It could be that your breathlessness is caused by the effect on the nervous system - which includes the autonomic system which controls breathing and a few other things.  The theory goes that the effects on this system means that signals don't get through to the brain properly so it gets the wrong message and thinks you need more oxygen so tells you to breath more deeply.

Secondchance profile image
Secondchance in reply toGambit62

I have never had anaemia but had breathlessness which is worse if B12 gets lower when I get a late injection /forget my sublingual B12. I think it must be due to a neurological problem with me as al my symptoms were neurological in the beginning. Most have resolved but air hunger or needing to take a deeper breath is one that comes back quite quickly.

fbirder profile image
fbirder

Yup, breathlessness when walking the dogs is my primary indicator of the state of my B12. When first diagnosed I could barely manage 200m. Now I'm fine up to 4km (2km if it's been a while since my last jab).

Lisahelen profile image
Lisahelen

There are certainly days when i cant do all the things i used to do! 

Frodo profile image
Frodo

I do still get breathless, and at the same time my legs feel very heavy and as if they are not working properly. But strangely, not every time. Sometimes I'm fine, and only get 'normal' breathlessness after walking up a steep hill or steps. 

I can't understand why it is intermittent.

E-A-S profile image
E-A-S

YES .... My breathing problem - now into its second decade - has been in the process of investigation for a little over two years with no diagnosis yet!  I think I will take this up seriously with my GP, haematologist, immunologist and the respiratory consultant too and see what they come up with ..... I can guarantee it will not be B12 deficiency with which I've been diagnosed!

louisairishart profile image
louisairishart

I have suffered PA for 10yrs.  As an artist l found it had a terrible effective on me. My creativity was gone.  I made an appointment with my consultant who told me that lack of B12 affected my subconscious mind where creativity and dreams come from.  Did you  know that B12 is activated by light and deactivated in dark.  

When l wake up in the morning l immediately go to  window and stare outside get dressed and go outside for at least 10 mins it really wakes me up.  The thing to remember is is to eat your protein early in the day.  And not to have any before bedtime as it will not be digested and lie in your tummy till morning until your B12 becomes active again.  Dont forget that B12 turns protein into iron and in turn gives you energy.  Lucy 

maggie7 profile image
maggie7

Good morning, my name in Maggie and I have breathlessness on exertion. I have IPF which means the lungs are scarred and fibrosis. It is frightening when you walk and try to do anything, I have to sit down and rest if I am out. I am exercising at a class in the village hall, but it is extremely hard. Waiting for Rehab.

Attending Brompton Hospital next week to see if any medication will help.

Try to be positive, and take care. xx

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