Syndrome, symptoms and therapy
Persistent symptoms and physiotherapeutic support
Source: Chronisch ZorgNet and LongFonds, lecture on the state of the art, 21 January 2021
“Long COVID-19” is the current name for the syndrome whereby patients experience long-term COVID-19-related symptoms (symptoms that persist for longer than three months, or even for longer than six months).
Listen to the podcast (in Dutch) on this long variant or keep reading to find out more.
This lecture is about Long COVID-19 Syndrome. This is the syndrome whereby patients experience persistent symptoms following infection with the COVID-19 virus. A syndrome is a collection of symptoms and complaints that collectively form a clinical condition. In this case, it results from COVID-19 infection. It turns out that the illness affects people in very different ways. Some become very seriously ill, some remain symptom-free, while for others it is even fatal. The rehabilitation process is also varied. The recovery process has proved to be hard to predict and there is no clear link between the seriousness of the illness and recovery problems.
Medical specialists such as pulmonologists, as well as paramedical specialists such as physiotherapists, have now accumulated more than a year of experience with the recovery process in patients. What are their experiences, what have they learned, what are the long-term symptoms and what can be done better?
Experiences with long-term symptoms following COVID-19
Most people recover following infection, even those who have been seriously ill. Some continue to experience symptoms, sometimes for more than six months. These symptoms may be physical in nature, or emotional or cognitive. There are also symptoms of a social nature. All in all, patients are seriously impeded in living their daily lives, i.e. they function much worse than before contracting COVID-19, whether at home, at work, with family and friends, or when taking part in sport and recreation. And we still don’t know why that is and why they don’t recover.
There are however assumptions and hypotheses based on the experiences so far with this complex problem. One thing is clear: for us as professionals, as physiotherapists, it is very important to be aware of all the impairments that patients experience, despite the ambiguities and uncertainty about the cause. Since we do not have a protocol, we have instead adopted a general approach. This consists of listening to patients and observing the symptoms they describe. Once we have collected that information, we can determine the patient’s capacity for daily exertion with questionnaires and physical tests. This establishes the baseline situation.
However, in contrast to normal practice, we do not use ‘training’. With Long COVID-19, a different approach is needed! This conviction is based on the aforementioned experiences. Firstly, we have learned that it is important not to push the body. Secondly, patients must avoid peaks and troughs in their activities. Thirdly, with many patients, this means we actually have to go more slowly, rather than pushing them.
I will now first describe these long-term symptoms. I will then discuss how you can address these as a physiotherapist. This is followed by the hypothesis for the origin of these symptoms.
The long-term symptoms
Among the symptoms, there is something of a top three:
- Relapse after effort
- Cognitive problems
What these symptoms have in common is that they occur to varying degrees. However, there are other symptoms that also occur to a greater or lesser extent. These include headaches, shortness of breath, heart palpitations, diarrhoea and sleep problems. This combination of problems leads to confusion for patients, but also for practitioners. A combination of physical, mental, cognitive, emotional and social problems arises at the same time. You ask yourself: is there lung damage? Is there brain damage? Is there a lack of oxygen due to cardiovascular problems? Specialist research has yet to give us an answer. However, we do know that this uncertainty leads to anxiety or depression among patients. The patient becomes frustrated by the inability of anyone to do anything about it.
How can physiotherapists tackle this?
As mentioned, the top three symptoms are fatigue, a degraded response to exertion and cognitive problems. The fatigue can be extreme: for example, being too tired to chew your food, to slice cheese for sandwiches for the children or to go ‘all the way’ to the toilet. Or the patient may be capable of exertion but experience a strange relapse afterwards. When asked about their cognitive problems, a patient told the following odd story: “For example, my children pointed out that I had thrown a kilo of cheese away with the plastic waste and put the packaging in the fridge.” Another gave the example of playing a game of Rummikub: “I played the combination 6-8-9-10 and couldn’t see what was wrong with that.”
The normal physiotherapeutic training approach of gradually doing more to gradually recover has proved to be ineffective in this case. The approach that does currently appear to work consists of the following tips, which can help patients adapt to the situation they find themselves in:
- Limit yourself to daily activities and don’t think in terms of training.
- Try not to push yourself but instead to limit your exertion.
- Try to learn the art of ‘collecting good days’. This means learning to structure your days so that they become good days, without relapses.
- ‘Multiple good days’ will lead to fewer relapses. Your body will learn to adapt to good days, which helps it to recover.
The therapy consists of helping patients to put these tips into practice.
Hypothesis for the origin of these symptoms
To find a solution, specialists across the globe have already put their heads together. Everyone is astonished by the strange consequences of COVID-19 infection. In the Netherlands, this has led to the hypothesis that the virus destabilises the balance within the nervous system, i.e. the balance between the parasympathetic and sympathetic parts. The sympathetic part is active during activities, which generally means during the day. The parasympathetic part is generally active at night. It processes daily stimuli while we sleep. While I have explained the difference as two extremes, in reality there is a continuous interaction between the systems in all our bodies. Both interior and exterior stimuli are processed continuously. This permits continuous adaptation between “stress” and “rest”.
If the balance between these two systems is indeed destabilised, how can we stabilise this balance again? The best answer to this is: by taking it easy. By not overtaxing your body. By understanding that the body can recover on its own, provided that it has the space to do so, despite the personal and environmental factors and daily challenges. As such, the question you face as a patient is whether you are able to do this or can be helped to do this. In short: “Don’t run, but plan, are you able to do that?”
Our practice has several specialists who can support you during the process of adaptation to the situation that has arisen due to contracting COVID-19. Gertrud Pijnenburg and Tanja Lith have studied the disease and its consequences. We have also formed a local COVID-19 team for the Nieuwmarkt area, which means we have short lines of communication with the Kalkmarkt GP practice, occupational therapists at ErgoDichtbij, the Buurtzorg Centrum (local health centre) and, for nutritional problems, with dietician Natascha Smoltsak at the Oudemans GP practice.
Advice and support
For advice and support, please call the practice or email any questions you may have to Gertrud Pijnenburg or Tanja Lith. You can also use the contact form on this site.
Telephone: 020 6225477