From exhaustion to shortness of breath – many people are still far from healthy after surviving the corona infection. You suffer from Long Covid. So does the psychologist Stefanie Nüßlein. Together with the doctor Cornelia Ott she has developed a program for Long Covid patients. They wrote down their tips in a book.
Ms. Nüßlein, can you say something about your long Covid symptoms?
Stefanie Nuesslein: The hardest thing for me back then was that nobody could really tell me what could help. Even today – a good year after my illness – there are still no approved therapies or medications for Long Covid. This is of course very frustrating for those affected and that is why this book is also a real project close to my heart! Back then, I didn’t want to let the months of waiting for doctor’s appointments just pass by so I started training myself. My knowledge as a psychologist was just as helpful as my daily aha moments in my everyday illness. From this specialist knowledge and experience, I have developed a Long Covid self-coaching program, which is now also intended to support other sufferers to gain more energy and quality of life step by step.
And how does the program work?
Stefanie Nuesslein: Those affected are accompanied in 6+2 steps through different phases of Long Covid. It was very important to me to prepare scientifically based concepts such as mindfulness, stress management and pacing in such a way that those affected can start their everyday lives immediately with concrete tips and exercises. Pacing means that those affected use their own resources carefully and recognize where their own limits lie. If you like, the program is immediate help that connects to different levels: mental, physical and cognitive. And I take our readers by the hand by always including my own experiences. Affected people have the feeling that they are not alone and that is exactly what encourages and motivates them to change their usual behavior.
Can you explain the main points?
Stefanie Nuesslein: It’s about paying attention to body signals and consciously using your own resources – with an extra portion of relaxation and mindfulness. However, that’s easier said than done when you’re used to your body functioning properly. Many of those affected try intuitively to pull themselves together with sentences such as “Make an effort” or “Pull yourself together” and thus repeatedly exceed their current stress limit. Unfortunately, this is exactly the wrong strategy for Long Covid. Therefore, the first step of the program is: accept what is. This is the only way to be able to feel your own limits better and to change your usual routines in such a way that you can get through the day well even on bad days and not exhaust yourself completely on good days. And with the right balance between rest and activity, the self-coaching program is also about looking ahead and training body and mind very carefully and consciously.
Stefanie Nuesslein: That’s a very good question, because finding the right contact point is a real challenge for many of those affected. On the one hand, because the symptoms are so diverse that at first you don’t even know which specialists you actually need to contact. On the other hand, because not all doctors know how to correctly classify the described complaints. Those affected often complain that their symptoms are dismissed and ignored or blamed on psychiatric or other psychosocial stressors out of ignorance. We recommend that you first contact your family doctor and see specialists and therapists who already have experience in the treatment of Long Covid or Chronic Fatigue Syndrome (CFS). There are also great networks for those affected, such as the Long Covid self-help group on Facebook. In addition to valuable experiences and insider knowledge about therapy options, those affected also receive encouragement and hope that things can get better.
What are your top tips for Long Covid patients?
Stefanie Nuesslein: In our book, other affected people also describe their experiences with me in order to avoid stumbling blocks in dealing with Long Covid. My three most important tips are:
1. Take abnormalities seriously
If someone has the feeling that something is wrong, then he or she should definitely investigate the matter. It is also important to insist on a detailed diagnosis in order to clarify all symptoms. I would like to encourage those affected in such situations to trust their own intuition and stand up for their own needs.
2. Involve the environment
It is important to inform those around you about the illness situation as early as possible – on the one hand, to avoid misunderstandings and conflicts, because your partner, family, friends or colleagues could possibly misinterpret your own behavior due to the symptoms. On the other hand, to get help and support when it is needed.
3. Be proud of yourself
Day by day sufferers are forced to find a way to somehow cope with Long Covid. They can be proud of every single day they have mastered despite pain and limitations. This shows true strength and deserves full respect and recognition. For me it is always admirable how people deal with crises in life and develop further as a result.
How difficult is it for doctors to diagnose Long Covid?
dr Cornelia Ott: The challenge is that the symptoms can occur alone or in combination and cannot be assigned to just one clinical picture. The most frequently mentioned problems include breathing difficulties, difficulty concentrating and what is known as fatigue. This is an exhaustion that cannot be eliminated by getting a lot of sleep. These symptoms reach into different departments. Depending on the symptoms, cardiologists, pulmonologists, neurologists or others should therefore be involved in the assessment in order to rule out other causes. Unfortunately, this takes some time, but it is important for the diagnosis. One only speaks of post-Covid syndrome when the symptoms have persisted for more than three months and cannot be adequately explained by other diseases.
What can you report from a nutritional point of view?
dr Cornelia Ott: In addition to the already mentioned and very stressful fatigue, there are often digestive problems up to allergy-like symptoms with palpitations, runny nose or itching. After a corona infection, in addition to incorrect colonization in the intestine, it is not uncommon for certain cells in our immune system to become hypersensitive – the mast cells. This then manifests itself in an intolerance to foodstuffs, which those affected can hardly classify. For example, the same products can be tolerated well or not at all simply because of the way food is prepared. After a detailed anamnesis with a nutritional protocol, the suspicion of a mast cell activation syndrome (MCAS) can be raised. A temporary low-histamine diet and anti-allergic management can improve the symptoms.
How can those affected deal with the fact that they don’t even know why they have these symptoms?
dr Cornelia Ott: In medicine, there are often diseases that are not caused by just one cause. This is then called multifactorial. It seems to be similar with Long Covid. Ultimately, all organ systems can be more or less affected, which explains the sometimes very different symptoms. In addition to the general improvement in the state of health, it is important for those affected to know the right contact points for their problems in order to be able to start taking measures as soon as possible. It is quite possible that a group of patients will benefit from targeted respiratory therapy, physiotherapy, relaxation exercises and nutritional therapy measures at the same time. For another group, however, this may not be the optimal approach. Individual solutions must therefore be found, especially in the case of long-lasting and serious courses.
What should sufferers know?
dr Cornelia Ott: First of all, as already mentioned, it is important to rule out other diseases. It could well be that, for example, food intolerances or an autoimmune disease were already present before the infection, but only became noticeable through the corona infection with the immune system not coming to rest. Depending on the underlying disease, the appropriate therapies would then be started.
Rather, in our book we explain the practical implementation of health-promoting strategies that have a modulating effect on the immune system for those affected by Long Covid – in such a way that everyone can start immediately. The waiting times until the specialists or care centers can still last several weeks or even months.
This includes, on the one hand, an anti-inflammatory diet, the promotion of intestinal health and the targeted use of micronutrients. In addition to the structure (how often and how much is best for me to eat?), it is not just about introducing new things (e.g. eating more antioxidant- and fiber-rich vegetables and making a good night’s sleep a strict priority). It’s also about changing habits (reducing trans fats, sugar, alcohol and stimulants like coffee). With all these measures there are little helpers such as micronutrients, adaptogens from the plant world and pre- and probiotics for stabilizing the intestinal flora. We then embedded the whole thing in the form of many helpful tips and simple documentation for self-monitoring of progress or setbacks. This makes it easier for everyone to stick with it in the long term. In addition, I offer helpful laboratory measurements in my nutritional medicine consultation hours in order to individualize and, if necessary, expand the therapeutic measures.
Source: Stern
