Long Covid AND autonomic dysfuction
15th August 2023 | Dr Melanie Dani and Dr Boon Lim
Introduction
Long Covid is defined as persistent or new symptoms, attributed to Covid-19 infection, which last for more than 12 weeks after initial infection. They are often present earlier. Such symptoms may include fatigue, post-exertional malaise, breathlessness, chest pain, inability to exercise, palpitations, brain fog and fainting. However many more symptoms have been described and it is likely that the condition encompasses a range of different problems. This is the focus of global research activity currently. It is very common indeed, and has had major implications for society as it has left hundreds of thousands of people unable to work or exercise as before. As time goes on, we understand more and more about the condition, and possible underlying causes. It is likely that there may be multiple causes, and multiple underlying conditions. It can be scary and unpredictable, and often frustrating to find yourself in the situation where you are much ‘well’, or fit, than previously. It can also be overwhelming to read about new and constantly evolving ‘cures’ which can often be disappointing, so we advise sticking to trusted sites only.
Autonomic dysfunction and Long Covid
What Can I Do?
Autonomic dysfunction is a very broad term which encompasses abnormalities in homeostasis (which means of self-regulating process by the body to maintain stability). The autonomic nervous system itself is that bit of the nervous system that regulates all the automatic functions which are not within conscious control such as blood pressure, heart rate, temperature regulation, sweating, peristalsis or gut contractility, urine production, and pupil dilatation. Think of the autonomic system as the master controller for all our subconscious bodily actions which maintains our day-to-day function without conscious sort of control.
We take this for granted most of the time and the autonomically system simply serves this and keeps his ticking along with an adequate blood pressure and heart rate to respond to day-to-day challenges, including stresses and strains, which elicits the fright or flight response (sympathetic nervous system activation), or resting and adjusting and rejuvenating which activates the vagus nerve (the parasympathetic nervous system). We can sometimes experience heightened states of autonomic shift, both towards the sympathetic nervous system, for example when we have an exam deadline or a job interview which compels us to increase energy levels to be able to stay awake and pulling all-nighters to complete the important task at hand. Equally we have also in life have been able to experience deep parasympathetic activation, for example when having long Sunday morning lie-in, feeling completely rejuvenated after refreshing 8 to 9 hours of sleep after a busy week. Some others practice intentional relaxation techniques such as yoga, breath work, meditation, can feel a sense of calm set into to your body -which is that feeling of restfulness mediated by activation of the vagus nerve.
Now imagine that chronic state of stress elevation both in terms of physical stress associated with the illness of acute COVID, together with the chronic stressors of long Covid symptoms, social isolation, inability to perform at work, or indeed at home with your family, and the uncertainty of recovery – all these factors provoke a chronic state in the autonomic system, which may be akin to preparing for the longest ever exam on job interview which can last 6 months or a year without any let-up or relief in all domains: physical, mental, and emotional. You may even questioning the very purpose of life, and how and why you got here, in this state so out of kilter from your normal pre-COVID self.
Please do not despair, recovery is possible and with gentle steps, 1 day at a time, and with tools and techniques to rebalance the autonomic nervous system, it is possible to feel better.
Below are some potential useful links to help guide your understanding of autonomic dysfunction in Long Covid and tips to improve your overall health and wellebing:
The StopFainting team have prepared this downloadable PDF bookleft with useful information on lifestyle advice and management for autonomic dysfunction symptoms
In addition, it may be helpful if you are seeing your GP, to print and provide this leaflet to help your GP understand more about Long Covid and to signpost resources, for both yourself and your GP. This leaflet was written by experts, and endorsed by the Royal College of GPs, the Clinical Post COVID Society and Long Covid SOS Groups.
The Long Covid Podcast with Jackie Baxter – Dr Boon Lim discusses autonomic dysfunction, the heart and long covid:
https://www.buzzsprout.com/1835170/10757785
Fixing your autonomic function in Long covid (interview with Gez Medinger)
Some of you may have heard of tilt testing – which is a form of othostatic testing, essentially simulating a stand whilst being in a safe environment (ie tilt table clinic). There is a form of “tilt testing” that you can perform at home, called an active stand test. This is something you can do yourself with an upper arm cuff BP machine – which is something you can learn more about by clicking on the link (active stand test explained).
However if you’d like to learn more about tilt testing, do watch the video below which shows examples of tilt table testing data, and what patients with autonomic dysfunction in long covid may experience during tilt testing.
We have found that the steps we mentioned in the ‘tips and tricks’ section in the Dysautonomia section help symptoms in many cases – this is fundamental to recovery. At the moment, like other orthostatic intolerance disorders, there is no set ‘cure’ or magic bullet to cure the condition, but rather, a series of steps to gradually work on your symptoms. It is important to pay careful attention to each step, ensuring stress reduction and gradual reintroduction of activity. It is critically important to pace yourself, and allow yourself the time and space to get better. A useful way of thinking about this is to allocate yourself an ‘energy’ allowance for the day and plan your day accordingly, taking care not to use up all of your energy on one task and allow plenty of time for relaxation and rest. Try to space out essential tasks (such as household chores or going to the shops) throughout the week so that you do not do too much on one day. The key is to ensure you have regular gentle activity with plenty of breaks and rest, to allow your body to slowly upgrade what it can do.
In this video, Suzy Bolt, a long covid patient herself, who runs a yoga for long covid recovery class (360mindbodysoul.co.uk), interviews Dr Boon Lim and Dr Melanie Dani to discuss Autonomic Dysfunction in Long Covid.
