Breathlessness and palpitations

Hi everyone, for quite a long time on and off I've been getting palpitations. One of my GP's diagnosed atrial fibrillation 3 or 4 years ago, but I'm not really sure he got the diagnosis right, as another doctor showed doubt about it later on.

More recently I've been getting high blood pressure, numbness and tingling in feet, sometimes lips and nose. I've been getting more breathless. Especially going upstairs or if there is slight inclines. I feel like I've been winded and have to stop for a few mi Utes to get my breath.

I had an appointment with a cardiologist and he was very nice. He did an ECG and I did feel some palpitations while having it, though he didn't mention anything. I previously had an ultrasound on my heart and a 24 hour monitor. He said that it so far looked OK. Although he knew that Lupus can affect the heart. He now wants me to have a 7 day monitor and asked if I get tightness of the chest and swollen ankles which I do.

Also the ultrasound showed I had fluid on my lungs. I am feeling a bit nervous as both my mother and grandmother had RA and eventually had heart failure. I've been really tired and feverish for a few weeks. I also have auto immune hepatitis and been having extra steroids for a flare, although they don't seem to be helping (Budesonide).

Anyone had any similar things doing on, and if so, what did it turn out to be? Thanks X

15 Replies

  • I have the same Symptoms but I have Copd and Harding of the right heart Ventricle uper that goes to my lungs. I also get light headed when I cough sometimes I even pass out. I can't walk up hills or run and stairs are oh no can't do that well eather. Hope that mite help.

  • Thanks David, that sounds awful and scary. I feel for you.

    The doctor asked if I ever pass out. I don't thankfully, but I do get like headed and dizzy at times. I put that down to lupus or the auto immune hepatitis. Now I'm not so sure. The doctor thinks the fluid in my lungs is probably causing the breathlessness. I'm not sure what they plan to do about that. He said he would write to my GP.

    I'm wondering what caused the hardening of your left ventricle. Is the the COPD?

    Take care. All the best.

  • Hello Jacqueline

    I forget whether you're hypermobile? And whether you've been investigated re Dysautonomia, PoTS etc?

    Just seems to me these might be involved in the symptoms you're describing

    I experience some of these sort of symptoms...we think they're mainly town to my vascular ehlers danlos hypermobility & Dysautonomia

    🍀🍀🍀🍀 coco

  • I have t been investigated for fhe illnesses you mentioned, though I have read about POTS in the past, but didn't feel I had that, though I do get vasculitis and it affects my head ( headaches and foggy thinking).i know anything is possible with these kind of illnesses though. I have always had times where I sleep for days at a time.,,,just waking for a drink or the these times my body feels really heavy and I feel kind of drugged up.

    The strange thing is, no matter what I do with diet etc..,nothing changes. I don't eat gluten, dairy or sugar, and try and eat as natural as possible. Also I've tried, herbs, Chinese medicine, homeopathy etc etc, with little or no improvement. I feel like I'm always fighting a virus or infection.

    I get tired of trying to find answers from doctors as I feel a lot of the time they are clueless too. Maybe I'm just not explaining things right or have the wrong doctors.

    I keep thinking about finding a doctor who can find out if I have underlying virus's or infections that aren't been detected. I know I will have to pay privately though and not sure I can afford it.

    Thanks for your input. I hope you get some relief from your conditions X

  • Hi I have just made an appointment with a cardiologist I saw last year. He diagnosed me with resting tachycardia due to lupus.I have all the same problems as you but just put it down to lupus as gp wasn't very helpful and had no answers.Rhuemy did say was keeping an eye on vasculitis.My heart races when I lie down when I wake up, after I eat if I have 1beer,get the same breathlessness when I do anything like stairs or walk fast.Had a heart screen in work on Monday.My heart rate was 92 and my blood pressure was up.Explained all this to that doc and she asked did any doc discuss pots with me.So my cardiologist is on 3 weeks hols so will see him when he's back.I am going to get this sorted as I am so sick of this it's been constant for last 18 months non stop.Gp didn't seem too interested.I think God forbid I would have to be having a heart attack in front of him for any action to be taken😞I seem to be managing all the other stuff ok at the moment.So will post on my cardiologist visit and hopefully find out what's going on.Take care.Circles😂

  • Hi, thanks for your reply. Yes I get the racing heart, especially in the morning, but not all the time. Also my pulse rate is almost always in the 90's and I have high blood pressure a lot of the time.

    I will look I it POTS again. It's really depressing when doctors don't care or seem interested. I have that a lot, I was really pleased that the cardiologist was good. I have Lupus, auto immune hepatitis, Sjogrens, Reynaulds, and finromyalgia, and just failed PIP assessment as well. So I have a lot on my plate at the moment.

    I hope you get sorted out, it's frightening and worse when you can't find out the answers. Good luck. And thanks again

  • Hi Jacquiline

    Sorry to read of your breathing problems but glad you are being tested by a Cardiologist. You could also have pericarditis which can produce similar symptoms and is treated by anti inflammatories like NSAIDS or steroids. It is inflammation of the lining of the heart. There are a lot of conditions that it could be caused by Lupus but it sounds like they're close to knowing what's wrong and will help you.

    Sorry too that you failed your PIP assessment. Can't believe that!. Do ask Citizens Advice for help if you want to appeal. They will alleviate a lot of the stress for you. As if you haven't got enough to deal with!. Keep us posted and good luckX

  • Thanks for the message Misty. I am really hoping the doctors will sort things out soon as I had another night of breathlessness and had to sleep practically sat up. It's so scary at times. I worry more because both my mother and grandmother had auto immune problems and both developed heart failure, I think the cardiologist must suspect something as I did a 24 hour monitor a couple of weeks ago, and had an ECG in his office. Maybe he is just being cautious doing another 7 day heart monitor.

    Yes, I am kind of surprised at failing the PIP assessment, but not in another way. As they seem to be geared at all the physical aspects of illness. Because I can walk and drive they think I'm ok. I will go to the citizens advise though and see if they think I have any chance of winning, it's worse because I live alone and life is already very stressful trying to cope with everything.

    I know I'm Not the only one though. Lots of people seem to be suffering under the goverment rules, I hope one day things will change

    Thanks again for your message. I will ask the doctor about pericarditis..

  • Hi Jacquiline

    If you develop severe chest pain suddenly with the breathlessness you must dial 999 and have it checked in A&E. Specially with your genetic history worries etc. It is a scary thing to have so I hope you get treatment soon. It's good your cardiologist is being very thorough. All the best for a good outcome. X

  • I recently experienced something like this, heart palpitations and breathlessness which brought on an anxiety attack. Was having nervousness and tingling in arms before. I don't have all the issues you have, I have a positive ANA but have not been diagnose. It appears it was from GERD. I didn't realise the acid in my stomach was so bad as I am used to the burning. Now the acid is under control, I am well again. It was really scary though.

  • Hi J..... I have sent you a personal message today. Am not sure where this last month has gone! So sorry to hear about your latest concern...isn't it annoying when medics just don't seem to agree?

    I am not sure what AI hepatitis is exactly and how it affects you sound like you have an awful lot going on, as well as your studies. How is this going?

    Are you on any meds for the high BP? I take Perindopril and that seems to keep it at an acceptable level. I think maybe the numbness in extremities is common to many of us comes and goes. (Peripheral neuropathy - if you want to know the fancy name!!!)

    Do you think that some of these symptoms may be stress related?

    Cheers and hugs,


  • Hi looby, sorry for the late reply. I'm struggling to keep up with things at the minute. I don't have any meds for blood pressure at the moment apart from beta blockers. Though I haven't been taking them, as I'm hoping they might find out what is causing the problems. Though I'm probably hoping in vain.

    Yes I wondered if it was peripheral neuropathy, it really just started at Christmas time, along with swollen ankles that come and go, sometimes my fingers, nose and lips get numb and tingly too.

    I'm on holiday from college, thank goodness. I felt I would have had a breakdown if I had to carry on any longer. I've still got a assignment to sort out as I messed up on it weigh the references (brain fog) there I think. One year left! Just hoping I get through it.

    Looking at next years work scares the heck out of me!

    Yes, medics not agreeing is so annoying, I went to st Thomas hospital in London a few years ago, and they diagnosed MCTD and RA. Doctors here didn't think I had RA. Doctors in London told me to increase my steroids through rough patches, doctors here said don't etc etc.

    Auto immune hepatitis is similar to lupus, but the immune system just attacks the liver...I had stage 3 fibrosis on the last biopsy over a year ago, and I've been flaring a lot since then. The next stage is cirrhosis. Hoping I'm not there yet. There are 3 stages of cirrhosis too.

    I'll be in touch very soon on private message, but yes we live close. I live in Blyth I'm sure you'll know it. Speak soon. Take care.

  • Thanks TGee, I do think I've had that too at times. It is scary, do you now take antacids?

    I think this is different because it's been getting worse when just walking or on exertion. Hopefully I will find out for sure soon.

    I'm glad your feeling better. It is awful. It seems a lot of us suffer from these kind of problems.

    Take care. All the best

  • Thanks Misty, I definitely will do. So far I haven't really had chest pains. The odd pain here and there but nothing significant thankfully. It's more of a pressure feeling on my chest. The cardiologist asked if I get chest pressure, and swollen ankles. Not sure what he is thinking.

    I'm hoping it's just down to the fluid in my lungs which he thinks is probably caused by the lupus,

    All the best. Take care.

  • I'm going to ask a question and I hope it's not stupid, but does anyone get breathless , racing heart and heaviness/weakness when they put their arms above their head, ie hanging the washing out? . It's not all the time, but most times. Last place we lived for a year I had a clothes horse on a balcony, so just started noticing it last 2 months having moved.

    Could this be POTS? Tend to go dizzy as well because my BP is always quite low anyway. I had an episode 4 yrs ago where every time I stood up my heart raced. if I sat down it slowed down but as soon as I stood up again it raced up to 110 beats. That's when I had first ECG and had 2 more since but they never capture anything.

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