Hi everyone I am new to all this but I feel ill all the time cant go out or do much at all as soon as I stand up I feel weak and faint nauseous always breathless have ache in my shoulders and back sometimes middle of chest at the front feel I cannot hold myself up so have to sit or lie down until the event eases off - I was diagnosed with AF two years ago rushed to A&E by ambulance stayed the night and discharged with Edoxaban and Tildium this helped stop me feeling the flutters and palpitations so much but I still have these symptoms And have slowly got worse - now I have finally had few tests It shows frequent atrial/ventricular ectopics and Features of mild LV diastolic dysfunction iv waited since January for a consultant to ring me to discuss the results three times rearranging my appt and I am still waiting
I am at the end of my tether as have no quality of life if I get out for an hour I am desperate to come home as terribly tired - I have Fibromyalgia and chronic fatigue diagnosed 15 years ago so really do not know whether it is this or the AF.
Can anyone relate to my symptoms or suggest anything as family GP is rubbish.
Thank you all who reads this
Liz
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Bebetired
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Not sure if I got this correct, but sounds like after an initial arrhythmia diagnosis of afib, the later diagnosis was just ectopic beats and mild diastolic function. Not medically trained, but but your symptoms suggest more may be going on. How much of that is chronic fatigue/fibromygia is a question mark.
Given the complexity, best sorted out specialists in the respective fields and not your GP alone, who you don't have much faith in anyway. For your afib/ectopics that would be a cardiologist or preferably an ep.
While waiting for an appointment, you might consider investing in a Kardia device for home arrhythmia monitoring.
If it turns out that the more recently diagnosed ectopics are actually new episodes of afib, it could accomplish a couple of things. First, it may in part or whole explain your symptoms and second, it will offer documentation that you have active afib which hopefully will get you seen sooner by a specialist. Not to mention you will probably be given new medication guidelines or other interventions during a potential afib episode.
Thanks for your reply the two things they have detected cause breathlessness and all the other symptoms I have but I don't know if anything can be done about it as they are not in any hurry to discuss this with me I know there are a lot of people worse than me and they are very busy.
Hi thank you for your reply I do have under active thyroid this is regularly tested and I am on 125 mg thyroxine sorry I forgot to mention that - this is the problem though they say you are within the normal range but one GP who I always used to see once said I was better when it was higher/lower? cannot remember now she used to say T 3 needs to be tested too but the doctors just do T4 I think? - I never seem to get to the bottom of anything always left struggling. suffering without proper answers I get very confused as late - I suffer with anxiety and depression also and have been very stressed lately as hubby going through bladder cancer treatment also it never ends.
Can you afford to get an Apple Watch /iPhone combination, a Kardia or similar? Both will tell you the state of your heart rhythm and reassure you. Multiple ectopics feel no different from AF to me and even a rate of 100 -130 has me sitting down and worried.
I know you say he or she is "rubbish" and I'm not sure what that means, but your GP will know from training and experience what is what; alternatively, maybe go to A&E for a check over and reassurance? A private cardiologist / EP appointment with ultrasound would be around £600 all up I should think - is that do-able?
Despite training and experience some GPs are rubbish and don't know what's what and this is particularly true for dealing with the health of the female half of the population as study after study has shown. So that sort of a comment is not helpful especially when made by a man to a woman.
Hi thank you for your comments and support I stand by what I said from years of being let down and GP’s not listening properly years ago you would see the same doctor and they knew you now I don't know any of them and it would be the same if I moved Surgery
I have had poor experiences with doctors myself - lots of women do and most men are unaware of this . Have you ever got any inkling into what has caused your fibromyalgia and CFS? Is it possible that you could have been treated with Fluoroquinolone antibiotics in the past ? They can cause both and arrythmias as well. They can also mess up the thyroid.
I'm not sure which part is not helpful nor how has my gender affected that? Did you mean when I wrote, "I don't know what that means" or "maybe go to A&E for a check over" or was it when I gave the price of private care?
Perhaps I could have written "GP ought to know..." rather than "will know...". I agree that would have been more realistic but, overall, what I said was not intentionally unkindly offered.
No it was your naive assertion that the GP would know what is what because of training and experience . That is simply not the case for many women and as a man you cannot ever have experienced misogynistic gender bias. I am sure what you said was not meant unkindly at all and you are certainly not the only man on this forum who does not appeciate the ingrained gender bias against women in healthcare. You seem to have good care from your GP and trust them . You are lucky but should not assume that that is the norm. It isn't and it particularly isn't for women. I have an internet friend who sat on a comittee that was looking into outcomes on drugs and medical devices. They looked at a form of hormonal pregnancy testing ( no longer used), sodium valproate use in pregnant women and vaginal mesh. She told me several months ago that what they found was horrifying in terms of bad treatment of women by the medical profession and that the MHRA came out very badly - not fit for purpose basically with too much indulgence towards industry. I read a report in the last week in the Guardian about the committee 's findings which confirmed broadly what my friend told me - though they kept quiet about the MHRA.
It seems not to be a lack of knowledge and experience, then, but a prevailing attitude towards women that results in that knowledge and experience not being put to good use when the patient is a woman - even when half of GPs are, themselves, women. I wonder why those female GPs treat their male patients so much better than their female patients? It's all very odd, but, I think, as you say, true. I did read in recently how women stroke victims are treated differently from men even in ER. I think it's being deeply investigated so hopefully there will be some answers produced.
There are effective female and male doctors and there are doctors of all genders (including those who don’t identify as either male or female) who just don’t listen and to be fair, in today’s climate it’s really hard for GPs to listen when the clock ticks away and they all have full waiting rooms to listen for long but there is no excuse for lack of awareness IMHO.
I think the essential point is that conditions and diseases can be gender specific, most medical studies on which many text book diagnosis and treatments were developed using predominantly male subjects automatically create bias of which many doctors seem completely unaware. Add to that the peri-menopausal and menopausal symptoms which are passed off as ‘normal’ just because it’s part of a female life cycle and you have a perfect storm of women often not gaining access to essential medical attention and treatments.
Fibromyalgia and chronic fatigue in particular tend to be mainly in females - as few as 10% tend to be male - now the fact that it is under researched and under treated should say something about the prevailing attitudes and lack of awareness. Thankfully it is starting to change but not nearly quickly enough, as this recent study identifies:
Since the recognition of gender bias in the clinical management of cardiovascular disease, [17,18,19] several other health problems have been the target of research, which shows the extent of gender inequity in health care. Last year, Nature Communications published a study analysing health data for almost 7 million men and women in the Danish healthcare system over a 21-year period, and showing that women were diagnosed later than men in more than 700 diseases [20]. Despite demonstrated disparities in women’s health and advocacy to improve women’s health, there is still a lack of patient centred care for women.
Very, very sad that so many people, half the population, have to constantly fight this unconscious bias - which is why we as women will always attempt to highlight this issue.
I read an article in the Guardian recently that research into female specific conditions also lags behind. I think the shocking example given was that a great deal more money is spent on research into erectile dysfunction than on endometriosis. I am sure ED is distressing ( though once stuff like circulatory disease and diabetes have been ruled out there is always the little blue pill) but endometriosis can cause excruciating pain and infertility as well as sexual dysfunction. Often the first manifestation of this is severe period pain. But women are often told this is normal especially if their mother suffered the same. This happened to me . When finally I had a hysterectomy the biopsies showed adenomyosis - a type of endometriosis. I bet my mother had it too .
It is sad, as you say - very. It is not at least impossible that your focus is a little skewed, by your own experiences as mine is, too, by my years in the pharmaceutical industry and my own experiences of the healthcare system. For example, my wife has never to her knowledge experienced any issues that she would relate to her gender, and that covers various GPs and hospital doctors. My daughter-in-law is in health care and she, too, doesn't feel that she has experienced this. My late son, in his doctor's training, never once reported a gender bias in what he was taught or in the textbooks that he used and we did discuss this. So I have a different experience and not merely because I am male (or naive ).
And yet, clearly, there are serious issues, at least in some areas. Why women with vague abdominal pains often or sometimes fail to get properly investigated must be one area. What opened my eyes recently, as I say, was that women who suffer strokes do seem to receive different treatment, on average, from men, even in ER. So, yes, something is wrong and it needs understanding and resolving. I can say, however, that men with 'IBS' are also poorly investigated in my experience - abdominal pains are a tough area for a GP to solve..
I don't think it is necessarily down - entirely at least - to what you ascribe it to - patriarchy, essentially, and its myths and old text books, even though that must be partly the case. I suspect it is also that chronic illnesses aren't easily dealt with and treatments remain poor. Also, it has to be said that some of these illnesses have psychological aspect in, if not origin, at least in the overall morbidity they create. I was slightly involved in some of the really early work on what was then sometimes called "Charing Cross Disease" if I recall, now called ME or CFS. That early work was carried out at Charing Cross hospital and it was mainly female nurses who suffered. My friend's son had this, too, a few years ago, just at the end of his exam period at school, and now my cousin's daughter has it as she is trying to study hard for her Open University degree wile also managing her family life. It seems sometimes to afflict people who are pushing themselves to the limit or who are stressed for other reasons. I know little about fibromyalgia, but I was surprised you described it as an inflammatory condition, when it is not regarded as such medically. Luckily, it seems both conditions are having more attention given to them these days.
I'll look at the Cleveland link but I don't think it is generally accepted to be an inflammatory process; indeed, that is the problem - finding (as with ME) any causative aspect or just anything that would allow a more precise diagnosis to be made and a more effective treatment given.
The two conditions are both very sensitive to discuss since those who suffer them rightly hold strong views indeed at times, no surprise given the lack of treatment available. I think you might be right in some cases about ME being "post viral" but also a lot of sufferers might also be shown to have "over-reached" themselves physically and mentally, or have become exhausted for other reasons, with no evidence of a prior viral infection (i.e. no antibody response).The early work I referred to at the Charing Cross hospital seems to show that one effective treatment was enforced and prolonged physical and mental rest, even extended sleep through sedation was shown to help if I recall well (this was the late 1970s) / early 80s if I recall).
The research shows it's worse than that. As CDreamer says the texts books and decades old practice are based on male models of physiology . There is hardly any research into how and why women's different physiology results in different presentations of diseases that are not gender specific. We are just treated as deficient males - deficient because often treatments do not work as well in women or we get more side effects. Doctors both male and female come out of med school with these biases. There has been very little push to challenge this by female doctors and scientists until quite recently. Things will change hopefully but it will be slow . There still seems to be a lot of misogyny in society in general these days despite 50 years of feminism!
There still seems to be a lot of misogyny in society in general these days despite 50 years of feminism! I have been asking myself recently if the rise in open and violent misogyny is because of 50 years of feminism.
However, I am greatly impressed with the under 25 generation who seem to be much more fluid and flexible around gender issues, although that can cause many difficulties with the issue of pronouns!
Just for general clarification - gender is about how you identify in your mind and has nothing to do with your sex. It is the sex you are born with which determines physiology. It is very easy to get confused when you use a base line of binary sex and gender.
I think there is a lot of misogyny about in many areas of society. I teach English and see it everywhere and discuss it in many of my lessons. I think it is rather more nuanced than the rather binary view you state in your reply suggests you take, but that is based on your experience not mine, and of course, as you say, I'm a man and part of that patriarchy! I think 'naive' is hardly a word that describes my mindset, though, but I can see why you said it in this instance. This forum (and, indeed, someone else's thread!) is not the place to make the kind of complex points that are sometimes needed and so a succinct comment can easily be misinterpreted as 'naive' or even, misogynistic. In general, I think GPs do have vast reserves of knowledge and experience and, although a few of them will deserve the epithet 'rubbish', I believe it is far fewer than you imply. I think, too, that the patient interaction with their GP often leads to a poor outcome. It's easy to blame the professional in that case, but humanity is what it is and non-sentient computer-doctors aren't yet available.
I have had a mixed experience with doctors. My husband and I have had the same GP ( 3 different ones) for than 30 years and I would say that his experiences have been more positive. I would say with no hesitation that all the doctors my mother saw in the practice she went to were rubbish . Her health issues were not treated seriously and her experience culminated in a bad death which affected me a lot as I was with her at the end. I complained to the relevant authorities at the time. Misogyny can be in your face or much more subtle and insidious. The latter is harder to get rid of. Given the lowly position of women for millenia it is not surprising that 50 years of feminism and a few laws have not got rid of it. I think one of the main problems in medicine is the ingrained attitude that "women's problems" are normal/part and parcel of being a woman and have to be put up with rather than issues that need to be better researched and if possible treated. I suspect that if men had to put up with the monthly problems menstruation and PMT can bring ( often leading to feeling crap for nearly half of the month) there would be a lot more energy and money put into finding remedies. It is riduculous that we are at the end of the first quarter of the 21st century and the "taboo" subject of menopause is getting a real airing.
You have experiences that have formed your views. I have not had those experiences but I think men have their own stories to tell. My own mother's treatment at the hands of her GP was very poor, but that is in the nature of human systems which will and can never be ideal. We are heading towards computerised GPs I suppose. I wonder whether they will have misogyny programmed into them?
Probably. Also our parent's generation were far more prone to regard their doctors as godlike. My mother would have cut out her tongue rather than complain about the doctor!
To generalise, I’m sure that’s true. I don’t like generalising though and I suspect that the respect many held for others in the past, although sometimes clearly not deserved, can also be argued to have added to society in useful ways.
Hi and welcome and so sorry you are going through this as you should be getting much better treatment and you GP should be proactive in helping you to access appropriate help. If not, either complain - in writing - or change your GP.
We as patients also need to be proactive and from experience I know that sitting patiently waiting means you get overlooked, especially if you are a woman, sorry but it’s true.
Thyroid.
AF can be a complication of thyroid dysfunction so I would suggest that would be the first condition to get under control.
Unfortunately T3 is not covered in the NHS testing but you could get a private test - it comes down to money I’m afraid as they do only minimal testing and they don’t take account of anything borderline.
Fibromyalgia is chronic inflammation which again will affect your heart - as will the stress of caring and worrying about your husband. Anything you can do to help yourself reduce inflammatory levels and stress such as relaxation techniques etc will help. Are you on Oxygen for the Fibromyalgia? How is that being treated? Have you been told about anti-inflammatory diets and do you follow one?
Unfortunately the system is under huge strain at the moment and there aren’t enough specialists so I can see both sides about this situation but again she who makes a pest of herself by ringing the secretaries, often gets heard and seen. Stay quietly in the background waiting and you can tend to disappear off their radar.
If you can afford to buy yourself a Kardia to track your arrythmias that will really help and if you can afford to see a specialist privately - cost circa £200-300 for a private consultation that would also help but the specialist wouldn’t have access to the NHS test and the costs of the tests would be a lot more than the consultation - PPIman indicated - it’s a bit of a Catch22 situation.
You are not going to change the efficacy of your GP or how the NHS so it’s how you work with and around that which will get any results and that’s exhausting, as I well know so my heart goes out to you. You need help and support - are there any family/friends who can help advocate for you? If not find an advocate service, there are quite a few around.
Very best wishes CD and do let us know how you get on.
Thanks CDreamer, you made great points: "We as patients also need to be proactive and from experience I know that sitting patiently waiting means you get overlooked, especially if you are a woman, sorry but it’s true. Unfortunately the system is under huge strain at the moment and there aren’t enough specialists so I can see both sides about this situation but again she who makes a pest of herself by ringing the secretaries, often gets heard and seen. Stay quietly in the background waiting and you can tend to disappear off their radar."
So sorry you are feeling so low. Perhaps you can talk to the doctor again and make sure he or she knows how you are feeling. You need help with this as it's affecting your quality of life. However busy the doctors are they should listen to you and as CDreamer suggests perhaps you have someone else who could talk to the doctor for you? It's hard to keep on trying to get someone to listen if you are feeling poorly, but that's really what you need right now.I do hope you feel better soon and can push for a consultation soon. Best wishes.
I was diagnosed with AF and prescribed Warfarin. A couple of years ago I was swopped onto Edoxaban from Warfarin. Since then I have become progressively more fatigued. I can do things, but when moving about I feel very tired and unwell. It’s only in the last few weeks that I became aware of a side effect of Edoxaban - anemia (reduction of red blood cells) which causes fatigue. I have asked my GP to swop me back to Warfarin.
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