breathlessness , anyone ????????

i have been suffering from breathlessness for a few years now, but these last few days its been very debilitating especially if i am doing anything physical ,for instance last night trying to change my duvet cover ,i had to give up in the end and just collapse on the unmade bed ! i was diagnosed with mitral valve prolapse 3 years ago , after i went to docs with this breathlessness , i also have lupus sjogrens fibro tmj, and nerve damage in ear due to shingles in ear , i am so fed up at the mo my ailments are getting longer by the minute and sometimes i just want to give up!, as i am in so much pain most of the time, but this breathlessness is getting me down, i have had a chest x ray 2 years ago which was clear and breathing tests done which came back ok , and i have a echocardiogram every 2 years to keep a check on my heart going docs on fri to see what he says ,does anyoone else suffer with this breathlessness ? thanks x

7 Replies

  • Hello , it was the mention of the duvet cover that did it for me! I have been unable to change a bed for a couple of years now,I wait till I have help,it's definitely worth getting checked again if its been two years,your doctor will hopefully request another X-ray etc.

    Best of luck to you and try not to do too much.

  • Hi yes I get breathlessness which just seems to appear and disappear at will .

    i have SLE with cardiac involvement and Sjorgrens also mitral and aortic valve damage, hope your visit to the Dr goes well, sending good vibes to you take care

  • Me too with duvet covers Rockchic. Changing them is extremely labour intensive and my least favourite task. Watch out for pernicious anaemia in your blood results (red blood cells swell so there are less of them, therefore less oxygen circulating in the bloodstream = breathlessness). Might not be down to heart problems at all although my Rheumatologist recently told me SLE and heart involvement is still poorly understood. Hugs anyway x

  • Hi, I have SLE, sjorgens, raynauds etc etc etc. The very first thing I experienced with the lupus was chest pain/breathlessness. I've had pleuritic pain and breathlessness for 3 and a half years now constantly so totally get where you're coming from. Until I started the immunosuppression I could barely walk to the end of the street. I'm still in pain all the time but it is at least bearable now. It may be worth talking to your rheumatologist about this, steroids and other medication can help a lot. Take care x

  • XRays and CT scans don't always show up serious lung abnormalities so don't be fobbed off. My scans are all spectacularly normal but a bronchoscopy revealed massive obstruction of one bronchus with manky, old, black, sticky mucus/phlegm (yuk). Still under investigation/treatment. May not apply to you of course, just sounding a word of caution about XRays and CT scans if you still have symptoms. Keep nagging!

  • Thanks for advice, will keep that in mind !

  • I have SLE and Sjogren's and, for years, was made to feel like a fusspot and as though I was imagining my pain, fatigue and funny symptoms. I was only diagnosed as I saw a very good dr privately-not that I could afford it. My breathlessness has improved since I have been prescribed Atorvastatin, Iso Mononitrates and clopidogrel. I was told I that have 'trivial' aortic valve problems, arterial ? and atherosclerosis. However my gp is not 'worried' - (lucky her!) and does not think that I need monitoring by a cardiologist and does not regard this it as a problem. I'm fed up being made to feel as though I'm a hypochondriac if I insist that my symptoms are not the product of hysteria!

    So go to your gp and ask for an ecg. XX

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