Heart Problems: Ok just got back from doctors, I... - LUPUS UK

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Heart Problems

ebril profile image
11 Replies

Ok just got back from doctors, I have been having problems with high blood pressure, so doctors made me have ECG on friday. Just been told that I have an abnormal 'fast' heart beat, and the chest pains I have been having could be Angina................I asked could it be connected to the SLE and he said ''dont know''. Now I have to go for a treadmill test, I laughed and said I can just about walk with al the pain let alone do a treadmill test............he gave me a spray and sent me on my way, no time to answer questions etc etc. I am not due to see my rheumy until Oct, so worried now. Has anyone else suffering with heart problems brought on by the Lupus or is it not connected.

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ebril profile image
ebril
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nanny4 profile image
nanny4

My daughter is 26 and has an undiagnosed heart problem,she had beta blockers and tablets for severe water retention,she had been seeing a heart specialist on and of since she was a teenager ,with irregular heart beats chest pain palpitations,heart murmor now and again,she also has asthma. Her heart scan a few years ago was fine,although 24 hour monitors showed a. problem,the specialist said there is a problem ,not a functional problem but a neurological problem.

Cut a long story short he said,just to take the pills and always be careful as there is a problem but they don't know why.

That was a few years ago,she just got on with life,when she had heart scans this test it showed that she has scarring on her heart valves no one is sure why!but if it kept happening she would end up breeding new valves,she had another heart scan coming up on Thursday,she is to have them roughly ever 3 months to keep an eye on her valves.

They do not really know why it had happened,they say it could be because het lupus went undoagnosed for so long due to poor care by the many many doctors that she saw since a child.

To be honest with you they are now not 100% sure that she has sle,but are treating her ad if she has ,just to cut down the risk of more damage.

Sandy.

ebril profile image
ebril

Yeah they say that I must have SLE it for years but was only diagnosed two years ago and I think this has caused untold damage I have left a message for my rheumy to see if I can go and see her earlier as a bit worried, and also a but scared, just see what happens. Sorry about your daughter hope she gets the helps she needs. As a parent it's hard to see your children being I'll. I also have two daughters that have SLE so It is hard

nanny4 profile image
nanny4

Ah bless ya,I would ask to be sooner to ,maybe now they will pay mote attention to your heart etc,my daughter also has scarring on her kidneys also,which check didn't have last year,that is the problem with sle it is the damage that you can't see that you need to worry about,my daughter had had sores all over het body before now,and I always say if It's like that on the outside,who knows what's going on on the.

She sees an ms nurse at the hospital at the moment and she is brilliant ,she cam ring her anytime in the week and she sorts all my daughters appointments tests and blood tests she even goes with her to her appointments with her she says she feels bad for my daughter as she has been ignored for so long,and feels my daughter had been let down by the medical proffesion in general,hope you get an appointment really soon,I know from my daughters experience that chest pain can be quite frightening.

I do feel for you also for your daughters,it must be hard for you seeing your daughters with sle.

Let us know how you get on.

Take care Sandy.

Lulabelle profile image
Lulabelle

Hi Ebril,

I have Lupus SLE and SS (as well as other medical things to many to mention). I also have heart problems. However, the top 'doc's' are at a loss to advise whether this was caused because of the Lupus or whether it has always been there.

Many people have heart problems, some are walking around and don't know that they have until something happens, so I feel that not all conditions are because we have Lupus! Yes Lupus is a chronic and debilitating condition and if not checked regulary and medications checked regulary it can then start to attack the bodies organs.

I feel that now the hospital are aware of your heart problems they will endeavor to make sure that you are monitered, correct medications provided so you can return bac k to your daily routine quickly. Not only that you will are aware of your heart condition and will make adjustments in your routine to take this into consideration.

Good Luck with everything, Lulabelle x

ebril profile image
ebril in reply to Lulabelle

Thank you Lulabelle have spoken to my family about it

And they said not too worry to much either just change

Certain things I do but thank you for replying

Thanks April xxxxx

Tigerlily4 profile image
Tigerlily4

What kind of "spray" Ebril - what's in it? I was hooked up to a heart monitor a few years ago in A&E while having difficulty breathing during a devastatingly-awful migraine. They found something abnormal with my heart apparently and I had to go for a treadmill test. Rheumy told me then they had little idea whether there's a link between SLE and heart disease and I've not heard anything since which indicates there is. Chest pains and (rarely) pericarditis come with SLE and some medication causes HBP so I wouldn't worry too much at this stage. Do try to attend the treadmill test though as they'll have more-sophisticated monitoring equipment and will be able to get a clearer picture of what's going on, if anything. Turned out my heart was fine. Hope yours is too!

tintin49 profile image
tintin49

i have an irregular regular heart beat and thats genetic as far as i am concerned. then last year i came back from the carribean and that weekend and my heart was racing so fast i was dizzy and feeling very unwell. ambulance called and went to casualty who after several hours had to restart my heart with adenosine and spend a night in hospital. my rheumatologist believes all this is lupus related but i have been like this all my life..who knows no-one really knows not even the specialist. just keep getting tested and keep yourself safe

Herb profile image
Herb

I had pericarditis when I was frst diagnosed with Lupus. Lupus can cause inflammation of the heart and around the heart but peoole with luus are also at high risk of coronary heart disease.

medicalnewstoday.com/releas...

oaktree profile image
oaktree

Had pericarditis.. inflammation of the heart sac..can be common with sle, can be painful & pain can be debilitating. Cardiologist said "never seen someone with so much pericarditis history 8 yrs, and so little damage, to keep doing "what I was doing. I haven't had an episode for a long the now. Acupuncture [which helped me a lot] [go to best trained person] can look at it as trying to protect the heart from something emotionally painful.. that was the case with me. Counseling, willingness to do the inner work, herbs, fish oils, chi gong, yoga, healthy lifestyle, naturopathy,all helped recovery. Caution with tread mill, I collapsed after it.. refuse to ever have another. Still learning from sle that I currently live with. Educating GPs, other medicals and myself. Hope this helps. Don't give up.Have heard of people healing.

All the best.

Herb profile image
Herb in reply to oaktree

Nice post. Anything which relieves our stress will help.

I had problems with treadmill too, I injured my foot really badly. I have osteoporosis and I think it could have been a small fracture even tho the x ray did not show anything. I also had massive increases in my heart rate on the machine, the trainers at the gym said it was impossible to have such a high rate and not die so the machine must be giving a false reading.

Now I stick to gentle walking and a bit of power walking when I feel up to it, plus climbing stairs at the hospital!

ebril profile image
ebril

Thank you oak tree

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