being breathless

hello everyone,

as some of you know ive had SLE (lupus) since 2005 and recently diagnosed with fibro in febuary this year. my question is; why am I so breathless?

ive had an chest xray when I saw my rhuemmy back in febuary, ive heard nothing so I ashume its good news. I don't have asthma or hayfever. I walk with my dogs everyday and make it as brisk as I can so to help my fitness level, but as you know some days that's difficult when my body is shouting NO!

never really got a straight answer from my rhuemmy, what ever my symptom is im told "its lupus" and not why or how I can help improve/ease that symptom.

sorry rambled on a bit havnt I?

im interested in knowing why,thankyou x

14 Replies

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  • I also get very breathless and my theory is that it is because our muscles are not recieving enough oxygen and so the body is trying to compensate by getting you to try and breath in more oxygen. Mind you it is only a theory. hugs sue xx.

  • agree with that....1000%

  • im glad someone else walks their dogs who has fibro/lupus.i walk mine (and there is noone else to do it for me)and it is always a slow walk -even having to get a bus home somedays..ive been criticized because I do so.i also get "breathless " and tight feeling in my chest /upper .abdo area when on sand or uphill.my rheumy only goes on about diet and exercise and wont recognize my symptoms(of lupus?).GP and consultants have been putting everything down to fibro and like you I have never been told what to expect in the future with fibro or lupus etc then the dr doesn't like it when you find out for yourself.

  • I love walking my dogs ok some days i cant do it but always try and do it myself everyday i think its that one thing that stops me going mad xx

  • Hi caninecrazy

    I am so sorry to read that you are feeling breathless when walking your dogs. I was wondering if you were in a lot of pain when undertaking this? And thus making you out of breathe?

    I could also be that you are walking too fast with your dogs? Or simply walking too far? There could be many reasons and I think it may be worth discussing with your GP?

    I have pasted you a link to NHS Choices relating to breathlessness, I hope that you find it useful?

    nhs.uk/conditions/shortness...

    All my hopes and dreams for you

    Ken x

  • Hi ken thanks for the info. I have had the tests, all clear. Still can`t walk from the living room to the kitchen without becoming breathless. Walking Meg has become impossible, I struggle just getting to the gate. I did walk her on sunday, I held her lead while being pushed in my borrowed wheelchair, really enjoyed it. Can`t wait to get electric one, hugs sue.xx

  • I am really sorry to read that, it cannot be much fun at all? I am pretty much the same these days owing to my COPD, I walk up the canal path and somebody has to come fetch me! If I had an electric wheelchair it would become a toy, as I couldn't help myself.

    Take care

    Ken x

  • Good morning,

    Hope today will be a good one for you. Yes, I get incredibly breathless. I have had asthma for years but this is controlled. The type of breathlessness I get is different to that. Even loading or unloading the washing machine makes me extremely breathless. My understanding is that it is linked to the exhaustion caused by lupus or fibro. (I have both) I have had lotsa tests and they haven't found anything 'worrying' so just got to live with it. Hey ho.

    I really do hope you feel ok today. Lyn xxx

  • thankyou everyone for your replies, it is even if I unload my washing machine, walk upstairs, a gentle stroll with my dogs, carrying piles of laundry from one room to another.......it can be anything im doing. im constantly told im over weight so that's why I walk as brisk as I can with the dogs when the weather is perfect for me ( early morning or late evening as I have to avoid sunshine and heat)

    maybe its just yet another "ingrediant" that's added to my lupus and fibro "cake" that im to learn to live with.

    thankyou for your answers its reassuring to know im not alone x

  • ahhh! thankyou ken, ive just read the link you put in your message. I am borderline anemic (even though ive taken iron tablets daily since aged 18) as that's another lupus ingredient I live with. so with lupus,fibro and anemia explains why I walk around with my mouth open breathing heavily! (cant breathe deep enough through my nose when moving) x

  • Hi, I was going to say that my old Rheumy told me that hyperventilation in it's medical term often goes hand in hand with Fibro. Tight neck and shoulder muscles lead to shallow breathing, (open mouth breathing) which exacerbates breathlessness, muscle spasms, pins and needles, which causes even more shallow mouth breaths and so it goes on as the carbon dioxide builds up. I had chest physio which involved breathing in time to a ticking clock. If you practice everyday for 5 minutes you will become more mindful of your breathing the rest of the time. Lie down and relax, and try to expand your whole rib cage with each breath in, (diaphragm breathing), breath in through your nose for 4 ticks of the second hand (get a cheap travel alarm clock, they tend to be really loud) then out through your nose for 6 ticks. You will probably have to build up to 6 ticks, it's harder than it sounds, but it worked wonders for my breathlessness, and for my neck spasms which only responded to diazepam before that :) xxx

  • That sounds awful, and I am really sorry to read that. Lupus on its own is bad enough but since you have other problems it is terrible. I really hope that you can sort something out with this?

    Take care

    Ken x

  • I get very breathless my doctor told me that there are so many symptoms with fibro and that everyone is different i also had tests done which came back clear so they have put it down to fibro but have give me an inhaler to help when bad xx

  • Hi michelle36

    I am so sorry to read that you also have breathing difficulties. The inhalers are quite good aren't they? It is easy to understand that when you are in constant pain that walking can make you breathless and completely exhausted.

    I sincerely hope that you are feeling as well as you possibly can be today?

    All my hopes and dreams for you

    Ken x

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