Fear of PAH

[Helenlouise40]

Hi all,

Looking for some tips on how you deal with health anxiety with this conditions. I was diagnosed with limited scleroderma around 4 years ago and have been relatively lucky with my symptoms. I have minor gi issues and some pretty painful lumps on some of my fingers. I have my yearly checks and I’m not on any medications other than high blood pressure tablets as my rheumatologist said there is no need as my condition is very well managed.

Recently I was having some chest pain and was in hospital. I had Ecgs and a heart scan and was told my heart was normal. Looks like it was anxiety mainly due to the ivf I was undergoing at the time.

I am struggling with the fear of getting pulmonary hypertension, which I have been told is a risk with this disease . I paid to see a heart specialist who told me my heart was perfectly normal and there was only a slight risk of pah with my condition.

I know nobody can predict the future and most of the time I try to keep healthy and don’t stress but lately all I can think is that my next scan will show I have pah and that will be terrifying.

How do people deal with the unknown of this condition? Any tips?

Thank you so much

Helen

[Clangerscat]

I’m probably not going to be much use to you but had to reply as it’s so good to know others feeling the same as me! I was diagnosed with diffuse cutaneous sclerosis last year after nearly two years of ill health and chronic anaemia. I have found that after the initial relief of knowing what was wrong I have got more and more anxious about my condition.

I spoke to my consultant about it who was very kind and told me he wasn’t worried about me at all, like you I’m not on any immunosuppressant medication. So I figure we just have to get on with life and not worry about something that may never happen. Easy to say very difficult to do! I wish you the best and take care.

[Hidden]

Hi Helen

I have been very recently been diagnosed. I used to l look after Scleroderma patients in a health setting so I am fully aware of what scleroderma is. What you have to try and remember is that there is a scale for any disease from mild to severe but the main thing is not to panic and just because you have a diagnosis you are the same person you were the day before the diagnosis. If you don’t have that symptom don’t worry about it You can’t live you life by what if. I hope that helps a little.

[Carp84]

Hi there, I'm 55 and I was diagnosed with Scleroderma in 2019, I was coughing a lot and getting out of breath. I was then diagnosed with PAH after about a year of visits to cardiologist, that was in 2021 December, when I had a right heart catheter. They have put me on medication for this which has kept my condition at a stable level, it will never be cured but my cardiologist sees me every 6 months and so far so good. I do still get out of breath going up stairs and slight steep roads etc. But I've learned to take it at my pace so can control it a little. In Jan 23 I was diagnosed with Mild lung disease, I fear this more, I have to see a respiratory consultant every six months> Currently I have an appointment for a gastroscopy and barium swallow as things are getting more and more difficult in that area. If getting out breath becomes more prevalent I would contact your rheumatologist to get referred to cardiologist, as this could be related to PAH, but there are tests to accurately diagnose this.

[positivedaybyday]

HII have acute diffuse systemic sclerosis which was diagnosed in 2017.

In this time I had many ups & downs. It is very frightening when this disease arrives out of the blue.

Remaining positive is such a brilliant tool.

I was referred by my Specialist to the Phycology Departmentry as for me it was a complete life change.

I found these 1 to 1 sessions very valuable to accept the new life & to aim at not being hard on myself as there are a lot of things I can't do from before my diagnosis.

I also spoke to my Dr who put me forward for different sessions.

There may be something your Dr can do for you.

We're all different & react in different ways.

Take each day at a time & praise yourself for what you have achieved. Focusing on what might happen can be a dark place. Good luck! Xx

[Jaq1971]

Hi Helen

I am recently diagnosed so not sure how much use I can be but what I will say is that my doctor has told me not to worry about the things you read on the internet this disease is very much individual to the person and if you don’t have a certain symptom you may never get it so worrying is not going to help . Easier said than done I know but I have found comfort in the small wins in life I have many issues mainly around my bowel stomach oesophagus and joint pain raynaulds too but my heart lungs and kidneys are good my liver not so great but I’m here and I keep going xx there are medications for most things to help with the symptoms and if an issue is identified they will support and monitor you and do everything to slow it down . As my mum always says you could be hit by a bus tomorrow so take each day as it comes as worrying never helps anything you got this and enjoy 😊 your family and friends and push forwards, speak to your doctor if you need help with anxiety no shame in reaching out for a bit of help xxxxx😍