I have for the last couple of months had breathing problems which I, and others, have blamed my Bronchiectasis for. This has now been ruled out and further investigations are going to be carried out in the near future on my heart. I'm finding this a bit worrying, to put it mildly!

There is a history of heart disease on both sides of my family. My 87 year old mother has been in hear failure for many years now so I'm witnessing the process on a daily basis which isn't always pleasant or helpful, believe me.

Anyhow I did what I always tell others NOT to do when in a similar situation.....I looked up the link between RD and heart problems, particularly in women, up on the Internet......my brain is wizzing with all sorts of information gleaned from Americian health sites that are enough to make sure I never have a good nights sleep ever again!!!! My granddaughter Gemma, the wee girl I never had, has threatened to take my iPad away from me if I attempt to do that again......wise wee girl.....

So it's over to NRSA and to all you who are a wealth of information, experience and saged advice. Help me out here please. I want to know of your experiences. I'm thinking though that I might be a bit premature in asking for this as nothing has actually been confirmed ....but.....id rather be prepared. I'm thinking back to the day I was told I had RD......I just sort of shrugged my shoulders and asked what next. I should tell you that at the time I was with a man who had a Harley Davidson and he and I were away all over Ireland every week-end camping, drinking, dancing and just generally have the time of our lives......I had no idea what was in front of me as I presented with a sore thumb and lose of strenght in my hands......within a year the man was gone and so was the Harley and with them, so was my life if I'm honest......but I've come to terms with all that and have a much reduced social life but I have adapted and excepted and this has brought me peace of mind......I still have my moments though where I look back at what I had and lost. But I'm still alive, pain free at present and still enjoy what we Irish call the 'craic'.... so I'm not ready for a shroud just yet.

I am to have a series of investigative tests done in the very near future, heart echo, stress test etc, etc. I have also been diagnoised with an increased BP and am getting a BP monitor on the 23rd of this month......breathing problems persist along with dizziness, chronic fatigue, all sorts of 'noises' coming from the heart area (I've had these for some time but didn't even mention them as I thought they happened to everyone....I know, I can't explain it either but there you are!) I've reached the point where I have noticed that if I sit and do nothing I have no sympthoms.....not great sure it's not?

I hate having to do this as ignoring the sympthoms I told you about above as I'm in really grand form as my RD is in such control. I've been through all the DMARDS and Four Bio's and am now on a very small dose of Pred, 5mg and am just great. Well the Pred will need to be increased soon but my GP said he isn't going to do anything until all investigations are completed.....otherwise I'm grand!

Isn't it strange how when the auld RD is under control your whole well being improves? Improves to the extent that I couldn't see, or ignored, other signals that something else might be going on. RD and all its components have taken over every aspect of my life for the last 5/6 years now......when it was in control all the world was a wonderful place and visa versa, I'm I on my own with that thinking? Somehow I doubt it! Something for all of you to be aware of too me thinks.

My posts seem to go on for ever don't they? I think it comes from living on my own and only having two dogs to talk to for most of the day. You should see the way they sit motionless in front of me, eyes all a glow, taking in every word I say......I just sit and gibberish away to them until they realise that I'm not about to give each of the a ham bone and they go back to their preferred places to sleep, the sofa looking out the window for Barney and my bed looking out the window for Kells......poor wee things living with their crazy mum!

Anyhow, that's it, the end of another Episole......I do hope you are all as well as you can be and that you will take a minute and help me in my hour of need......Don't mean to be so dramatic! XXXX

8 Replies

  • My dog would listen to you forever if there was a possibility of a ham bone! He'll stay beside me for ages just for a green bean.

    I'm with you on the world being a grand place when the disease is quiet. You completely forget the bad times, and ignore little niggles. And it's usually only when it's active that I obsess about every little new twinge.

    I don't know much about heart problems and us, except that it is more likely if your disease isn't under good control. But what I do know is that my mother had heart failure for an awful long time, and died last year at 97. So with good treatment it can be managed. But there's a huge span of things so fingers crossed that what you have is something simpler to fix.

    But whatever you do, stay away from Dr Google and the ironing & hoovering. Hope you have a lovely view from your window so can sit and take pleasure in it.

  • God this site has become sooooooo slow.....anyhow, Helix, always great to hear from you. I had a really good talk to myself yesterday while prostate on the sofa. I sort of had an over all look at my ever growing list of 'ailments'. I'm 66 now in April. I'm not in a place or state of health, for that age, that I had hoped for, but, when I looked at the big picture when everything is under control and I'm 'in the system' medically speaking, I am or at least will be grand. I still should be able to continue to do the things that I do now. I still clean my own home, shop, walk my dogs daily (the distance of course depending on how I am on the particular day), cook for myself, have the odd 'session' with my friend Denise. I also have two elderly parents that I have to look after too as I'm the only one in Ireland and of course the only daughter.......in Ireland that means they my 'responsibility'. I'm not complaining about them but there are sometimes I'm just not up to having to go to their house to sort out what ever precevied emergency is going on not them minutes after I have left their house. As I said I'm not complaining, they're my parent and I want to make they end days a easy as possible but it can take its toll on me at time too.

    Loved the Dr Google.....must remember that one. Thanks luv, hope your well. J XX

  • Ra and heart problems was on my mind the last time I saw my rheumatologist as I was born with two holes in my heart which was operated on at the age of seven so as it was to of my list of worries I asked will I be affected the doctor made a ladder with his hands and said your conditions is here pointing to lower down the ladder and heart problems and ra are at the top so it along way of affecting me I don't know if that helped or not

  • I cannot offer any real advice other than do not google. Easier said than done.

    What I do know though is your adorable Westie will listen to you until the cows come home if she is anything like my two.

    Hope you get your problems sorted.

    My girl Westie has fibrosis of her lungs. She obviously doesn't know this and a few weeks ago chased a pheasant. 13 1/2 at that. Yes it did make her cough but she enjoyed it. The bliss of not knowing her problems.

    Take care.

  • Do you need to put a post in cholesterol support?

  • Hi Jeanabelle,

    My daughter banned me from the famous self-diagnosing from Google too.

    Luisa 🌸

  • I was diagnosed with RD in 2013 at the age of 49 and like you my life has changed so much since. My husband works away and I'd worked hard getting my degree and masters while bringing up our two children. I graduated in 2006 and got a job I loved. October 2012 I made the mistake of changing jobs to one closer to home. I took poorly within my 3 month probationary period and was off sick for 2 weeks. I was sacked on the spot the day I returned and was treat appallingly. I appealed on the grounds that the sickness database they used showed I was off 4 weeks instead of 2, but I didn't stand a chance. I blame the stress I was going through at the time for the onset of RD as I was diagnosed not long after.

    Like you I've tried most of the RD meds. At the minute I'm only on 6mg prednisolone. I had a bad reaction to Enbrel in February last year and was put on Humira. My BP went up and I had to stop taking it. When BP was under control I started it again and then started getting palpitations so again told to stop. Cardiologist did tests and CT scan showed I have calcified plaques in both arteries that are currently not reducing blood flow. Bloods showed cholesterol high at 7.6. I was put on statins for cholesterol and I've lost a stone and a half through diet (being on pred for 3 years hasn't helped weight wise) I tried to go back on humira but felt really ill after each injection. Rheumy told me I've probably developed antibodies with stopping and starting.

    Like you I've been so worried. Both my parents died when I was in my early 20s through heart disease. Mam had a myocardial infarction and Dad had angina. My eldest brother (I'm the youngest of 7) had a heart attack at 50. I try to stay positive but as you know living with this disease is far from easy. I just keep telling myself if I didn't have it along with the palpitations/High BP then I probably wouldn't have been sent to the cardiologist for tests and I might be living my life eating what I want, drinking alcohol (haven't had a drink for 2 years) and getting stressed at trivial stuff that doesn't matter...steadily building the plaques up...

    I was told last week by my new rheumatologist, I have fibromyalgia so going to research diet and self help stuff for that.

    I have lovely conversations with my dog too, bless her. I always say she keeps me sane, plus research shows dog owners are less likely to get heart disease.


    Gotta stay positive and keep smiling 😊

  • Hi. I have a history as long as arm of heart problems on both sides and both my parents dropped dead at 73 of heart failure caused by undetected atherosclerosis. I seem to have landed the first signs of the Atheroscleosis and hypertension now too but my heart is okay apparently - just ectopic beats which are normal for many people I believe. So I asked my new rheumy about risks and he's decided that I only have mild RA and no other connective tissue disease (he doesn't believe in seronegative) and therefore my CV risk is low. I think he means in rheumatic terms not generally, family history, hypertension etc.

    I asked him about the higher risk for people with RA and he explained that this only applies to those with longstanding ad aggressive/ erosive RA - often smokers apparently. So if this doesn't apply to you Jeanabelle then hopefully you will not be any worse off for having RA - although it's as well to get it all checked out of course.

    Great that you're doing so well on low dose of Prednisolone only. I think I might end up back on this dosage again too but my rheumy made me stop after six months. I see a new neurologist sometime soon hopefully and will ask about steroids as they really helped me with my neuropathy and dizziness. X

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