Sick without a diagnosis: managing day-to-day life despite chronic symptoms

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Constant pain – and doctors can't find a clear reason. Just the thought is unnerving. Unfortunately, this is the reality for many people who suffer from a rare or undiagnosed medical condition. What helps them deal with the stress of not knowing?

Unclear symptoms

Almost everyone from time to time experiences occasional symptoms without a clear cause. Typical examples include flatulence, headaches, cramps, etc. Such symptoms are unpleasant, but usually disappear on their own.

When doctors can’t reach a diagnosis

If the symptoms persist, we consult a doctor who, as a rule, will find a cause and/or prescribe treatment. But what happens when this isn’t the case? Persistent symptoms and pain without a diagnosis can quickly become frustrating. The result can be a marathon journey from therapy to therapy and doctor to doctor without any diagnosis in sight.

Patients without a clear diagnosis often suffer a long and painful ordeal.
Prof. Dominik Schaer

Functional symptoms

Specialists refer to symptoms for which there is no clear explanation as functional symptoms. However, the fact that the cause can't be determined doesn’t mean that the person is just imagining things. In many cases it’s a combination of psychological and physical factors. Alternatively, the cause can be a rare or undiagnosed medical condition that is difficult to diagnose.

Living with constant pain

Chronic pain – and discomfort in general – severely reduces a person’s quality of life. It’s therefore important for patients to find ways to manage their daily lives, despite their condition.

Tips for patients

Especially when the person has many – or very severe – symptoms without a diagnosis, the uncertainty this creates can also have a strong impact on their mental state. After all, without a diagnosis, they have no prognosis on their life expectancy or on how the condition is likely to progress.

The following tips are not only beneficial to patients’ mental health, but can also help ease pain and control inflammation:

  • Diet: a balanced and healthy diet has a positive effect on inflammation levels and health in general.
  • Painkillers: only take prescribed painkillers.
  • Physical activity: in many cases, exercise can be used as medicine.
  • Social life: continue to see friends and family and lead a social life.
  • Leisure time: make time for hobbies and interests.
  • Relaxation: seek relaxation in your day-to-day life, such as with relaxation techniques.
  • Stress: avoid stress by organising your day-to-day life and, for example, doing breathing exercises.
  • Note: keep a diary and note what helps ease the symptoms.
  • Second opinion: if in doubt, seek a second opinion.
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Therapy

Medication such as painkillers and antidepressants can provide relief for a while but are usually not a long-term solution. Methods to help patients cope with pain are numerous, including physiotherapy, acupuncture, acupressure, radiofrequency therapy and cognitive behavioural therapy, to name just a few. In the meantime, pain therapists have also started using methods like the placebo effect.

Support for patients

The fact that some of the symptoms aren't visible externally can make the situation even more difficult. Patients may not be understood by those around them or be dismissed as hypersensitive or fakers. As a family member, it’s therefore important to take sufferers seriously and to support them.

Is a diagnosis always the solution?

A diagnosis provides patients with the clarification that they have a medical condition. This is often an important form of confirmation. Nevertheless, the causes of some medical conditions aren’t sufficiently clear, making treatment difficult. And this doesn’t apply to rare conditions alone. One example is fibromyalgia, where patients endure chronic pain in various parts of the body. Although there are ways and means to treat the symptoms, patients often have to go through a long odyssey of different treatments before finding a method that relieves their pain.

A medical condition is considered rare when it affects no more than 5 in 10,000 people.

Boundaries of medicine

Worldwide, 6,000 to 8,000 rare medical conditions have been identified. Due to the rarity of the conditions, trying to research them is challenging. In addition, recognising these medical conditions is also difficult for medical staff and, in many cases, the treatment options haven't been sufficiently studied.

Contact point for patients without a diagnosis

The University Hospital Zurich runs a contact point for patients without a diagnosis who have chronic physical symptoms.


Sources:

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