Scleroderma & Raynaud's UK (SRUK)
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My first broken heart 💔

My first broken heart 💔

Hey guys!

I’ve had my Holter monitor rigged up. I have to wear it for 4 days, see what’s going on with the little ticker.

Recap - since becoming sick 4 months ago I’ve had lots of palpitations, blood splinters, dizziness, chest pressure, shortnesss of breath etc etc. And an echocardiogram that showed fluid around my right ventricle. Now to wear this to see exactly what is going on , the technician who fitted it saw an abnormality in my heart rhythm straight away!

I’m waiting to see Dr John Pauling who is a systemic sclerosis specialist based in Bath! My rheumatologist and Dr John Pauling have arranged a few things (one being Holter Monitoring) before my visit with him! Slight delay in my appointment because I am Welsh !! The welsh assembly refused to fund my treatment and appointments because Mr Pauling is in Bath. I’m lucky though as my GP and rheumatologist have both written amazing letters to the welsh assembly explaining how essential it is that I get the funding !!

It’s nice to finally be having all the relevant tests! Hope your all okay!

Jaz xxx

4 Replies

Hi Jaz

Really pleased you got the funding to see Dr Pauling and that your rheumy and GP are fighting your corner.

Good luck with the results of the holter - hope whatever is wrong gets sorted asap and your appt with Dr Pauling is soon.

You are doing amazing xx

1 like

Thank you Winfield1 ....!

How are things with you ?xx


Hi Jaz

I've a broken heart too :/ .

Due to see a cardiologist on Tuesday as I've been having palpitations and heart rate spikes. Today at work I had a really funny episode (not haha funny but scary funny) felt like I was going to pass out and my head was tingling - it's happened before but the feeling lasted longer today - hope its stress (like everyother normal person but I never get what normal people get I always seem to get the unusual or rare diagnosis)

I'm also waiting a lung function test and a High resolution chest scan. Feel like my diary is full of dates with doctors at the minute. Trying not to worry too much though xxx


Winfield1 how did your appointment go ? A change in heart rhythm is common in systemic sclerosis, I’ve been researching it a lot! If you have a smartphone download the app - heart rate free. I’ts a fantastic way of tracking your pulse and heart rhythm. Extremely accurate, I take my pulse myself then use the app and it’s always the same reading. It shows you the ryhthem of your heart, mine is like New York skiline! All over the bloody place.

I also have the feeling I’m going to pass out, dizziness and black spots etc. I’m lucky as during the 5 days of my Holter monitor I had the feeling and was able to get it recorded, at the time my resting pulse rate was 178 beats per minute! If I’m correct, the lightheadedness is from your heart beating so fast that it dosnt have enough time to refill and pump blood efficiently! Who knows, time will tell - I’m hoping for my results back soon.

I really hope you get the results you wish for! We are experiencing very similar symptoms xxx


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