PCD Family Support Group (UK)
304 members152 posts


I suffer from reverse of the organs and PCD and recently I have been suffering with fatigue a lot... Sometimes I can't even talk where I am so exhausted even though I had a full nights sleep and slept well. It's really getting me down and I'm only 20 and hardly leave my house on the weekends when I'm off work because I just want to lay in bed. Wondered if anyone has had this or could help me figure out a way to help it because it's affecting my relationships with family as I'm too tired to interact.

6 Replies

Hi sorry to hear that you are feeling tired all the time. I would get a review with your respiratory consultant... it might be PCD related. Worth a try anyway!


Thinking of you - hope your doctor can give you some good help!


Sorry to hear about your exhaustion, this usually happens to me if I have an infection brewing. It maybe worth getting checked over, and having a culture done to see if you need any treatment. At times like this it is always worth doing more physio than normal, even if it's the last thing you want to do.

All the best.


Hi Katie.

I have the same as you. PCD and organs reversed and I have always suffered with fatigue. For me, I just see it as part of the condition and there's no magic cure. I find that eating healthy and keeping fit helps, but I have learned to accept I'm always tired and it takes a lot more effort to do things than "normal" people.

The social interaction bit I struggle with too. But for me this is mainly down to hearing issues. When I'm tired I lack the energy to really focus and listen / lip-read / piece together what people are saying. I've recently tried some hearing aids and they help massively, but I'm still not over the stigma of wearing them (I'm in my thirties). I'm getting there though......

It does seem unfair that we have to battle every day to work / interact / live - and it would be great if there was some help with it all. I've talked about the tiredness to different consultants over the years - and asked about financial help so I can work less and concentrate on my health - but never had any success with this.

I've learned to live with it by seeing it as a miracle of nature with quirks and issues that nobody truly understands unless they have it. I used to punch walls and bash my head against things because I was so frustrated with the cough / hearing / snotty nose etc. Nowadays I take a minute to myself and gather my thoughts. Then I'm ready to carry on.

I hope this post helps you to see you're not the only one that struggles. It's always helped me reading these boards and knowing I'm not alone.


This post has really helped me. Everything you have said relates to myself including not feeling ready to wear hearing aids as I have had them for years and still struggle to wear them in public as I am 21 with young out going friends. Snotty nose and cough bothers me so much I get very down. Thank you so much for your help and I hope life gets better for you :)


My late teens and early twenties is when I had more exhausted and fatigued but this was the time I was learning about chest physio therapy which was not done properly. As soon as I had purchased a device to help me perform chest physio therapy and meet my husband who helped me my health improved. Now I am in my late thirties and I have been getting more bouts of pneumonia lately which leaves me more breathless and harder to sleep at night but luckily I will now be a stay at home mom for a little while till my daughter starts junior kindergarten so maybe the infections will be less for now. From my experience I would say do not worry about social interaction get better first and the socialization will follow as tomorrow will always be a new day and maybe a day where you will feel better. (Positive thinking keeps a person going with this syndrome.)


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