Howard here just outside Llandudno (and near Conwy) on the beautiful north Wales coast.
I was very sorry to learn about your breathing difficulties, and I might be able to help. I am now 70 years of age, and following thorough tests at the NHS’s Walton Centre in Liverpool around 3 years ago, I was diagnosed as having C I D P.
What I have to say initially has nothing to do with C I D P, but I will bring C I D P into the picture as I progress, so please bear with me.
As a small child, I developed a condition called Pectus Excavatum, which I will henceforth refer to as PE. There is plenty of info on the internet about this condition (which I have had all my life), but basically the sternum grows inwards, creating a ‘dent’ in the chest. It can compress the heart and lungs, and it may not therefore surprise anyone that lung capacity is affected. I had a respirometer test a few years ago, which showed that my lung capacity is just 70 per cent of what it should be for my height and build. This denting and compression business happens to varying degrees in idividuals who have P E, and my P E is probably ‘in the middle’ as far as severity is concerned. I also had bad asthma and frequent bronchitis as a child, but although I am still suscepitble to this stuff, it is not as bad now as it used to be. One of the major day-to-day symtpoms of PE is the feeling of being short of breath as if you are being subjected to a ‘bear hug’. Just as you, yourself have described in your account of your C I D P. My own personal way of putting it is that when I lie down, it feels as if an elephant has his foot on my chest, but this feeling is there whatever posture I take up, lying, standing or sitting.
Generally speaking, GPs in the UK have been quite naïve regarding P E, and it is only in recent years that things in the UK have started to improve in this respect.
My shortness of breath (ie feeling of lack of oxygen as opposed to asthma wheezing) got me down so much so, that when I eventually left home to go and work and live in London, I did some research, and I eventually read an article in a magazine written by someone who had said that swimming had helped greatly. So I learned to swim and became addicted to it, because it was the best thing I discovered to counteract this ‘bear-hug’ effect. In fact, it completely changed my life to the extent that in my late twenties and thirties, I achieved life-saving qualifications.
Fast forward to my C I D P diagnosis. Had I been free of P E, I cannot say whether the C I D P would itself have caused me to be short of breath, but I am pretty certain, that all those years of regular swimming may well have counteracted any ‘desire’ for the C I D P to give me breathing problems.
About 18 months ago, in addition to swimming, I also took up Nordic Walking, using the correct walking poles for this activity. I am so glad that I did, for when the first Covid lockdown occurred in March of this year, I was unable to use the swimming pool for over six months, and in order to get the required swimming exercise to counteract the ‘bear hug’ effect, and also keep fit from the general cardiol-vascular point of view, I need to swim 40 lenths (25 metre lengths), meaning that I need to be in the water for about 35-40 minutes. Open water swimming in the sea is totally out for me due to hypothermia considerations.
What I discovered after the first lockdown started was that to a great extent, learning various techniques in Nordic Walking is a great help in counteracting the ‘bear hug’ effect. I can even give myself quite a good ‘body workout’. The poles help me me to keep upright when I use them, and as I walk, I push my chest out and when I breathe in, I push my diaphragm out as far as possible. It isn’t possible in this post for me to describe how to use the poles, but there are plenty of YouTube videos showing how to learn Nordic Walking. It is well-known that N W is very good for people who have neurological condidtions such as C I D P, and it has been a great help to me, not only as part of my C I D P management, but also as part of my P E management. Note that ordinary trekking poles are not suitable. You need to use the correct poles. Mine are made from carbon fibre by a firm called Leki. There is a shop in Cambridge called ‘Open Air Cambridge’ that specialises in N W kit, and the staff are very knowledgeable and helpful. I found that (very surprisngly), most other ‘outdoor’ shops don’t cater for the Nordic Walker.
I hope that this helps anyone who has the ‘bear-hug’ effect whether caused by C I D P or any other condition.
With all good wiŝes