Not everyone with Long Covid has the same symptoms. It is true that some symptoms like fatigue, post exertional malaise and orthostatic intolerance are very common but there are a whole host of symptoms and conditions that people with Long Covid can have. There is no cure that has yet been identified for Long Covid although many people do get at least somewhat better over time. If you use any of the links we would appreciate feedback on your experience. If there are other links and resources you think should be here then please let us know.
Often symptoms can highlight underlying medical issues that need to be looked at and treated by medical professionals. I am no way suggesting that you do not follow that up with your doctor but if like me you find all they do is a few tests to exclude some very serious but potentially treatable underlying issues then you may need to look at symptom management yourself.
I also recommend a referral to specialist clinics and assessments for further support in this area. I also recommend this resource https://www.longcovidsos.org/gp-leaflet which is intended for GP’s but may be of use for patients too.
Breathlessness and related issues
https://www.post-covid.org.uk/ British Lung Foundation and Asthma UK worked together to create a Post Covid hub looking at breathing issues. It has videos to watch and online learning tools to help people in this area as well as a helpline that can be called
Long Covid Support – via their Facebook group they have weekly Operatic Breathing for Long Covid sessions on Zoom you might want to consider
English Opera – The RNO run breathing classes although you do need your Long Covid Clinic/Assessment service
Physiotherapy for Breathing Disorders have put together a great guide here and there is other information on their website to help you assess if you have a breathing disorder. A lot of people with Long Covid have breathing disorders either as a result of Long Covid or pre-existing but Long Covid can put extra pressure on you and your breathing so well worth exploring.
Long Covid Physio have also put some information together on breathing issues here and this includes a link to Stasis Life which I use although it is no longer free as the details suggest but costs a quite affordable $5 a month.
If you have problems with breathlessness or breathing then not only is that serious in and of itself but it could add to or exacerbate other problems. Part of the rationale of the Mount Sinai program starting with breath work is because they feel it increases patients tolerance to be able to do some of the gentle exercises that can help with orthostatic intolerance and dysautonomia.
Post Exertional Symptom Exacerbation/ Fatigue also known as ME/CFS like symptoms
Rest and pacing is currently what is recommended most for managing these symptoms and giving you the best chance of recovery. In this area all resources on ME/CFS are likely to be helpful. We particularly recommend the Action for ME Guide on pacing if you are not able to get help soon enough from an expert. There are also great resources on many other websites including this new guide from The Bateman Centre on recovering from an ME/CFS crash/ flareup. Our Co-chair ran some sessions on rest and pacing for Long Covid Support and these videos are here.
Orthostatic Intolerance – Difficulties that come from sitting and standing relieved by lying down
I have written a couple of articles on this:- one around Long Covid and one more general. I would also recommend looking at the PoTS UK website as well as looking at some of the international resources such as Dysautonomia International.
ME/CFS Like Symptoms – See separate article on Treatment of ME/CFS Symptoms
This is only scratching the surface of different symptoms and co-morbidities people are having with Long Covid. I will aim to add more over time. If you are having different symptoms and want to know what other people are doing about them then I would recommend posting in our Facebook group or you can drop me a message.
There is now some promising research and treatments for loss of smell and taste – hopefully this will be available to people as well as effectively dealing with this issue.
Ben
