Long Covid shared experiences

Your stories and their unique features

Share your experience

Share your experiences with other patients. Together you will gain insights into what stresses and concerns people face following Covid-19. Listen to each other and learn. We would also like to listen to you and find out about your path and its unique features. This page provides a summary of our patients' experience with the long-term effects of Covid.

This is what patients have experienced about “weight loss and muscle deterioration”:

Patients' impressions:

"I was sick at home for 1.5 weeks, in a coma for 6 days and in hospital for another 10 days. During this time I lost 8 kg of weight (mainly muscle)"

"I lost 15 kg within 4 weeks."

"I have lost 10 kg, mainly leg muscle, and my tummy circumference reduced."

"I lost 10 kg as a result of nausea, vomiting and lack of appetite."

"Loss of appetite, loss of taste, extreme diarrhoea, severe weight loss (> 10 kg), body became very dehydrated."

"I had only little weight loss, but muscle loss, particularly in my legs.

Patients' impressions:

"I had weak legs and arms, my skin was hanging down."

"The Scales showed 'weight loss'. Also, I was unsteady while walking: it was painful and I had a lack of stamina."

"Scales, trousers too large."

"My external appearance obviously changed."

"Walking is difficult, my legs often fail."

"My Leg strength is weakened."

Patients' impressions:

"I've walked a lot (as much as strength permits) during rehabilitation."

"My muscles developed through exercise therapy, ergometry, gymnastics, swimming and walking."

"I did physiotherapy and functional gymnastics."

"Constant walking exercise"

"Movement and load adapted to my respiratory situation"

"I followed a healthy diet and did courses during rehabilitation."

"Where appropriate, medication to at least limit diarrhoea"

"Ergometer, wading through water"

"Walking exercises, taking a walk, exercise"

Patients' impressions:

"Excellent prospects, it's a question of time and effort."

"Good, I felt significant improvement after just 3 weeks through constant active training."

"Muscle development and mobility is progressing (still in a wheelchair on day 1, 5 rounds of gait test already possible on day 15)"

"Sound evaluation of chances"

"It's still too early for me to tell, for now the focus is on breathing."

"My capacity still limited, I continue to do exercises at home to improve my resilience."

"It's improving all the time."

This is what patients have experienced about “persistent dry cough”:

Patients' impressions:

"I often had a dry irritating cough."

"Antibiotics were administered in hospital for pneumonia and my cough with secretion."

"Severe dry cough, especially when speaking."

"My cough lasted almost five weeks, but no longer."

"My cough was really bad at the beginning and has now virtually disappeared and no longer causes problems."

"Coughing was very little to begin with, then after two weeks I had coughing attacks until exhaustion, mostly in the evening; now they only appear during sudden heavy exertion."

Patients' impressions:

"I had a dry throat during exertion and while talking."

"I often felt a strong urge to cough."

"Frequent severe gag reflex due to the cough."

Patients' impressions:

"I was given three different respiratory devices to exercise muscles and lungs."

"I did a lot of respiratory exercises during rehab."

"Sage lozenges and lots of water helped to keep the throat moist."

"Expectorants, cough drops and gargling worked well for me."

"During rehab I often inhalated, I had vibration massages and cough suppressant. I always have a drink ready, especially during breathing exercises."

"I often used a inhaler."

Patients' impressions:

"I've had positive experiences with respiratory exercises combined with medicine."

"Coughing receded gradually during rehab."

"All in all, I would say, that my chances of recovering from dry cough are quite good."

This is what patients have experienced about “respiratory pain / pleurodynia”:

Patients' impressions:

I had a feeling of pressure in the corners of the lungs when breathing in and out.

I felt like I had a low lung volume.

I had pain in the extreme corners of the lungs, but only in the acute phase.

Sometimes it was extremely painful, strain when taking a walk and during lung function test.

I had irregular mild pain and difficulty breathing when walking uphill or climbing stairs.

Pain was initially assessed at 7 to 8 on pain scale, extreme on gentle walks, currently much better: 2 to 3 on the pain scale following exertion.

Suddenly everything fails under exertion (climbing stairs, walking, uphill), I had no air.

Slight coughing when taking a deep breath

I had a recurrent indeterminable burning sensation in the area of the pleura, especially during exertion.

Patients' impressions:

I had an X-ray.

I recognised it by having difficulty breathing after light activity.

Rapid breathing.

Feeling that you are about to suffocate, like having panic.

Patients' impressions:

I had respiratory therapy following instructions, always breathing in and out deeply and consciously

For me, respiratory exercises helped.

I advise to perform breathing exercises adapted to pain and combine with stretching exercises, functional gymnastics, additional exercises using a TheraBand.

Patients' impressions:

I feel like I had a resolution of pain through rigorous breathing exercises.

My symptoms decreased steadily over time, which a doctor can also confirm using a stethoscope.

Good prospects of rapid improvement.

In my case, these symptoms diminished with time.

I say, relatively good prospects with professional help during rehabilitation.

This is what patients have experienced about “reduction of inhalation / restriction”:

Patients' impressions:

In the week before admission to hospital, I noticed that my tummy moves when I breathe in, not my chest

There is an absence of air when breathing in, shortness of breath, dizziness.

For me, inhalation restricted at the beginning of breathing.

I was not fully able to breathe in deeply.

I would say cough slows you down, left diaphragm didn´t keep up in my case.

Only shallow breaths can be taken because of the respiratory pain.

I had discomfort even with the slightest physical exertion.

Patients' impressions:

Short inhalation, chest barely rises

Pressure on your chest, low oxygen saturation

Measurable with respiratory training device

Breathing exercises

Ultrasound

Therapists can help through palpation and targeted massage

Patients' impressions:

I recommend various respiratory therapy devices, regular practice, and oxygen device at the beginning

For me deliberately breathing in deeply helped a lot, also I used an aid: coach.

Respiratory training and inhalation was very helpful.

I advise: Practise regularly, never give up even if you sometimes don't succeed

I say massage, breathing exercises and medication helped me the best.

Focused inhalation improves air intake and lung function

Patients' impressions:

Regular exercise strengthens lungs and muscles à it was possible to do without the oxygen machine during the day after 2 days.

Clear improvement after 3 weeks

For me it is doubtful whether and when former condition will be regained

Improvement through exercises even before rehabilitation

Very promising

This is what patients have experienced about “disruption in the exchange of air / diffusion problem”:

Patients' impressions:

Very difficult to breathe in, irritating cough

Breathing through the mouth seems OK, but not enough oxygen absorbed by the blood

Patients' impressions:

On the day of discharge from hospital, I was told that my breathing was very bad (“only up to the level of my chest”) and that I had to breathe in twice

My body was unable to cope with exertion; even the most minor activities are difficult (putting on socks, tying shoes, picking something up off the ground etc.)

Patients' impressions:

For me, respiratory therapy devices helped, they made it possible to breathe in again in one go.

External supply of oxygen helped me.

Lots of practice with respiratory therapy devices (Coach2 and Threshold)

Patients' impressions:

When I concentrate on breathing (especially exhaling for a long time), saturation is right (97/98); when I forget and/or exert myself, saturation falls (91-93)

This is what patients have experienced about “Oxygen requirement and device management”:

Patients' impressions:

I had artificial respiration during coma, then constant oxygen, which was gradually reduced up until rehabilitation; it was dropped during the day on day 2 of rehabilitation, as saturation was sufficient.

I had shortness of breath, dizziness, listlessness.

I still use an oxygen apparatus at night.

I have low oxygen saturation, therefore increased need for oxygen device.

Additional oxygen is required for me, more during exercise.

Oxygen was supplied all day for 3 weeks, then at night for another 2 week.s

I felt weak and powerless.

At first I had severe shortness of breath without supply of oxygen.

Patients' impressions:

Pulse oximeter

2x measurement every day

By health professionals

Patients' impressions:

I used Respiratory therapy equipment in rehab.

I had a supply of oxygen by means of oxygen apparatus and I learned deliberate active breathing.

I received respiratory therapy.

I used static and portable oxygen equipment.

Respiratory exercises helped me a lot.

Patients' impressions:

Good, but you have to focus more on breathing (deep, long exhalation).

For me, no oxygen supply was necessary after 3 weeks of rehabilitation.

I say good prospects with systematic respiratory therapy.

This is what patients have experienced about “mental problems / motivation”:

Patients' impressions:

The sentence "I'm going to put you in a coma now" is etched in my memory, probably also in my subconscious. In the hospital I had a hard time getting to sleep, probably because I was afraid that it would happen to me again. When I got home I was able to sleep better again.

I have periods of depression due to isolation.

I had a feeling of despair only at the beginning of the acute illness.

Sorrow

"Why did I of all people get it?”

I had a feeling of helplessness, a guilty conscience.

I had an increasing sadness, feeling my healthy social environment doesn't understand me, feeling pressured by work colleagues. I was frequently close to tears.

Those affected feel so powerless.

Initially, I had a distinct, life-changing fear of a severe course as I am a type I diabetic, then I had extreme fear of being able to infect someone (still persists), otherwise later also fear of becoming infected again. The depressive moods grew stronger in the course of the disease, marked reduction in motivation, resignation.

Patients' impressions:

My feelings were examined with questionnaires and talks.

Patients' impressions:

I recommend: Acceptance that your physical condition is not good, but that you can do something about it, and acknowledgment of the modest progress you have made.

Be compliant with the specified measures, readiness to be vaccinated.

Speak about your fears, have the courage to take a risk.

Partners, friends, awareness-raising by professionals is very important.

Emotional support from acquaintances, friends, family is very important and helpful.

Patients' impressions:

A great deal depends on physical recovery; the emotional burden is more pronounced in worrying about relatives who you cannot help yourself.

There are no magic remedies; time restores courage, strength and joy; don't force anything

Good to very good

This is what patients have experienced about “taste and smell”:

Patients' impressions:

I had no problems with taste and smell.

I only had problems with this during the acute infection.

Taste and smell were gone, I had loss of appetite, in some cases extreme aversion to food

I only had a slight salty taste

Completely gone at first, but has since returned, but I still have difficulty perceiving slight differences