feeling breathless

hello everyone,

over the past year or more ive become more and more breathless. even simple tasks as unloading washing machine, walking down to ginnie hutch to fed them, walking upstairs I loose my breathe.

I walk my 2 dogs and start off at a brisk pace (as im tring to loose weight) and slow down half way as by then im gasping for air. my legs are painful and become heavier than usual. I am borderline anemic but am on iron tablets daily(been anemic since I was 18 but told lupus causes anemia?). I do have fibromyalgia too. I know lupus and fibro run hand in hand and given me 8 years of cronic fatigue (not to mention the millions of other symtoms we all have too)

I walk with my mouth open as cannot breathe deep enough when moving. its embarising at work as my muscles burn as soon as I do any lifting (small crates of produce or push milk dollies) my colleagues are amazed at how unfit I am as they do not understand lupus or fibro.

ive had a chest xray in march and all ok as ive not heard anything from GP. any advice would be gratefully received as im really fed up of feeling 400 years old and not 41,

thankyou xx

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16 Replies

  • Hi caninecrazy, sounds like you should go back to rheumy., or get GP to help. Lupus can affect the lungs by way of inflammation. I have this problem. Your meds need adjusting as they are obviously not enough. Steroids for me are the cure. With anaemia, you can get breathless. Again this is problem for me. I have 2 yearly iron transfusions as mine is severe. Ct scans are good for diagnosing chest problems, your GP can request this. Sounds like you are starved of oxygen, which will impact on your body's muscles. I would not leave it any longer, and stress your concerns. Even DVTS can cause this if you have aps. Hope I have scared you enough to act, and now. Let me know how it goes. X

  • Hi I have been off work for 9 wks .i didn't realise my breathless was linked thought I was out if condition , in the last 9 wks I have had chest X-ray , E C G ,asthma test , lung function clinc , C T scan , am waiting on echocardiogram , lip biopsy and eye specialist as I may need tear ducts blocked , had lupus antibody in bloods last august . I went to GP with my breathlessness at the end of January I couldn't like you,walk across a room , I might add till 3 years ago I flew big sports kites the ones you see on beach para foils etc , tryed last summer and couldn't do it just thought I was out of condition , I didn't want to go looking for symptoms ,didn't ask questions ,was determined I was not ill . The consultant has said I have fibro but will not ,give me label of lupus , the GP actioned the first 3 test the Rumey ordered the rest ,after I got really upset with him said there was nothing wrong with my lungs he hasn't seen me get so out breath onlookers have insisted I am having asthma attack ,I think the hydrolinquinne I was on took my pain away ,so I try to be normal for me and maybe I have made things worse and nowI can't walk across a rd. I see my ruemmy again on Wednesday and am dreading it ,but I want to be well ,if it helps if you tell them all the test I have been given it might shame them into giving you what you need , I am by the way 52 am told I look and did act a lot younger but it's so frustrating I can't do what I love also can't walk my dogs either ,have a young man come communitie support for that as I live alone and my children live between 3& 6 hours away .by the way I am off all drugs at moment and have been told to take things gently and no stress . Take care of yourself oh yes and they have thrown sjogrens into the mix as well

  • I get like this and I am anaemic. Might be worth asking to have some bloods done.I am iron deficient and have my Ferratin levels checked regularly. I have had iron infusions in the past as I cannot tolerate oral iron

  • thankyou everyone for answering. im due to see my rhuemmy in may. she just said fibro causes breathlessness and to expect it. she wasn't overly concerned. ive had lupus since 2005 aas diagnosed with fibro in feb when I last saw her. I just feel so exhausted, I know its lupus + fibro + depression = making everything an effort, not only physically struggling but emotionally struggling. I really want to run away and hide and tell the world to s*d off.

    I phoned GP surgery today and next apt available with my GP is mid may (hes the only 1 who knows abt lupus there) x

  • Doesn't your GP have emergency appointments you'll have to forgive me but I live in rural Wales and if we need to see doctors here there pretty good ,

  • Hi canine crazy, I got breathless 8 years ago, dr sent me for chest X-rays but this didnt show anything. My breathing got so bad I was admitted to hospital and diagnosed with lupus. They did other tests, like ct scan, lung function etc which showed the problems with my lungs. You should perhaps phone your rheumy and explain how hard you breathing is getting, they may get you in earlier, or may even order the tests so they can have the results for your next visit. My lungs deteriorated quite quickly so I really wouldn't wait. Hope this helps and you get some help soon.

  • Get your GP to send you to have a lung function test and a chest CT. The CT will show any structural abnormalities, while the lung function test measures how well your lung exchanges gases within it.

    Do not wait around for the GP to call you or fob you off. If the lungs are in danger you need to act fast. I don't get how your doctor can just put it down to fibro without ruling out everything else. Get your GP to do his/her job and make you feel better. Now.

  • P.s and while your doctor refers you to check the lungs, he/she might as well get your heart checked as well - difficulty breathing could be caused by heart difficulties too.

  • I had that for a while, but seems to have gone. I do feel often like I need to be outside in air (beats me)..like Im air starved in that way now...

    ps/ have gasped for air in the night, but not lately..

    my brother has sleep apnea, but one doc said to me..u have to be overweight for that (I don't think that's true).

  • Well think we can all agree breathless is a common complaint. I have been short of breath on exhaustion, I can't walk up any incline with out struggling it gets worse when I am not too well. I have X-rays, ct scans echo lung function test and all have come back clear so I can only put it down to the Lupus, Fibro or SS I have. I will often get pain with it in the chest but think it must be my bones rather than anything else. I am 57 but always told I look younger and act younger. It is interesting though isn't it. I gave up work 10 years ago because of this along with unstabability. Take care and ask queastions. Ps I have never smoked. Xx

  • thankyou everyone for your advice. I will ask GP surgery again today for help. I too have never smoked. the breathlessness alters how I talk too,oddly enough. ive recently been getting slight tightening of the chest when im stressed or angry. not enough to go to A&E but its there for a while then fades as I calm down.

    don't know if connected but GP nurse is keeping an eye on my blood pressure as its 135/ 98 so bottom number too high. this has been like this for a year. I did have a heart mumour as a small child but I think I grew out of it, my mum isn't very forthcoming with what exactly happened then.

    I need to loose weight as my bmi says im overweight, so I walk with my dogs and walk to and from work etc.

    something totally random; I had my eyes tested 2 weeks ago and my left eye takes longer to focus from long to short distances so that's why I feel dizzy and misjudge things. x

  • Caninecrazy....I understand your pain..I get breathless too when doing simple tasks. I walk daily and sometimes my breathing is bad in the beginning and gets better as I go. Same thing with stairs. I want a one floor house. No one wants to move. Good luck with doctors. I just keep on my anti inflammatory tea if I get breathless. I may have to cut back on my bike riding because I seem to be too exhausted in the evenings. Breathless on their too...deep breathing difficult some days. I try my best to stay calm. Hard not getting upset.....I too want to go to eye doctor. I think that is why I am dizzy sometimes too...my eyes are off...thanks for sharing this valuable information.

  • Had similar problems last year canine.....couldnt get my breath and my muscles ached all the time, couldnt lift my arms long enough to comb my hair. When I told the rheumatologist she sent me off for blood tests to check vitamin d levels and I had to provide a 24 hour urine specimen, went home with a huge plastic container.... the tests came back with low readings....Seems my bodys function to use vit d with calcium has packed up. She prescribed vit D/calcium pills straight away and that helped...felt much better quite quickly. Might be worth getting that checked out...I'll need to take the supplement for the rest of my life

  • YES!!! And it happened all at once. I was rehapping after coming out of a two-week coma in Denver (aka Paradise). I was walking several miles every evening. At one point my foot which had been devastated by Lupus began to bother me so I stopped the walks. A month later I began again and noticed I seemed to be getting out of breath awfully easily. It got worse and worse after I moved to Milwaukee (aka Hell). I'm waiting to see a cardiologist now.

    Unfortunately I can't offer any help, just support. If I get any pertinent info from the cardiologist I will post.

    Best of luck

  • Yes, breathlessness is a common symptom, could be the anaemia, could be if you are too heavy, could be the lungs, could be the heart. You said it is worse if you are stressed or angry, if you find this happens, try taking some slow deep breaths and push your shoulders back and out so expanding your chest.

    I will post a link to the Peter Gabriel video to explain.

    Go back to the doctor and go over it again in case you need more treatment or tests.

  • I also had breathlessness and mine too was being anemic, been better on iron tablets.

    Jo x

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