Long Covid: What do we know now?
It is now three years from the start of the pandemic. Millions of people worldwide are still suffering the after-effects having contracted Covid 19. Long Covid, also known as Post Acute Covid Syndrome is diagnosed when a person is still suffering symptoms more than 12 weeks after the initial infection and other causes for their symptoms have been ruled out.
In the following article, Dr Tanya Patrick talks about her experience of Long Covid and shares some of the things that helped her recovery.
“I caught Covid 19 in March 2020 and made a good recovery after two weeks. The initial infection was relatively mild, although I had a fever of 40 degrees for several days and a pounding headache that nothing would touch.
After two weeks, I felt well enough to return to work and exercise and went back to running 8-10K regularly. However, in May and July I experienced what appeared to be a relapse with fever and flu like symptoms and then I just did not recover.
I felt like I’d been run over by a bus, with crushing fatigue, muscle aches, and headaches.
I could not walk more than a hundred metres, and could not focus on a screen without getting a migraine. My cognitive energy was as bad as my physical energy, as I really struggled to remember things. One day forgetting my bank pin and another forgetting the order of the months.
It was a pretty terrifying experience and like a lot of people, I did not understand what was going on. I could not look after my two children, do any housework or return to work as a GP.
My Symptoms
I saw a number of healthcare professionals including infectious diseases, neurology and my GP but did not get many answers. Like many, I turned to social media for support and answers and found the #UK Doctors with Long Covid Facebook group, of which there are now more than 1000 members.
Like many, I developed POTs (postural tachycardia syndrome), migraines, and significant exercise intolerance with post exertional malaise.
Migraines were also present daily and seemed resistant to usual migraine treatments such as beta blockers. I found it hard to be in noisy rooms or brightly lit rooms and I was always telling my family to turn the music down.
Her classes were a real lifeline. Actually, I think, this was a really important part of my recovery.
I really struggled with not being able to do any exercise. Having always used exercise to relax and manage stress, without it I felt like I was trapped in a body that was not mine. Thankfully, I found a wonderful yoga teacher Suzy Bolt on facebook who had started a recovery group for people with Long Covid. Her classes were a real lifeline for me and thousands of others. I went from being a big runner/ cyclist/ swimmer to meditating and practicing gentle yoga. Actually, I think this was a really important part of my recovery.
I was also completely intolerant of alcohol for more than a year. It left me feeling hung over within minutes of drinking and triggered awful migraines.
Things that helped me
Once my POTs was better controlled with lifestyle measures such as extra fluid, salt, compression tights and medication, I found I was able to do more without feeling so fatigued.
Over the course of a year I was able to build up to walking a mile and doing more resistance training.
I addressed gut health through diet and probiotics
I found a low sugar/ low carb Paleo diet was best for my energy levels. In addition, I addressed gut health through diet and probiotics. I started taking supplements for mitochondrial health, and herbal adaptogens to support adrenal function and cortisol levels, which were low. I also trialled some low dose hormone therapy to help control migraines.
I found when I was most unwell, I really struggled to fall asleep and stay asleep. Supporting good quality sleep is one of the most important things for recovery. Relaxation techniques, good sleep hygiene, nutritional supplements as well as melatonin helped me achieve better sleep.
In addition, I tried numerous other therapies which I feel had positive effects:
Hyperbaric oxygen therapy (I had approx. 20 sessions close together and around 30 in total)
Infrared light therapy and sauna (Evidence shows that this boosts mitochondrial function and reduces inflammation, amongst other benefits)
Acupuncture
Neural retraining This is an in-depth neuroplasticity course on how to re-wire your brain. This controversial area has helped many people with chronic ill health. It helps by focussing on the mind-body connection and supporting a feeling of safety and wellness. I was sceptical at first, but I think this exercise played an important part of my recovery.
I was sceptical at first but I think this exercise played an important part of my recovery.
I also prioritised exercise, starting very slowly with the yoga recovery group, and building up to more strength work.
I love swimming outside and my dips in the local lido were the highlight of my week. It gave me joy and a sense of normality when I was still mostly housebound.
Recumbent exercise is most beneficial for people with autonomic dysfunction so swimming, rowing, recumbent cycling are all good for building strength and regaining fitness.
My recovery took 18-24 months but even now, I feel I am still making small increments of recovery.
My recovery took 18- 24 months but even now, I feel I am still making small increments of recovery. I have been able to return to work, get back to ski-ing and almost get back to running. It’s an extremely slow process, but one that can be helped along the way with certain interventions. Rehab and pacing is important but in my mind, there is more that can be done and we need to look for the root causes of dysfunction first.
So what do we know now?
Everybody’s Long Covid is different, and there are a catalogue of different symptoms/ conditions that exist under this umbrella term. However, one thing that is almost universally present is a dysregulated nervous system.
The autonomic nervous system (which is responsible for the automated processes in the body eg. heart rate, breathing, digestion, blood pressure) is made up of two parts:
The sympathetic nervous system is responsible for our fight or flight response.
The parasympathetic nervous system is responsible for rest, repair and digest.
In people with Long Covid, their bodies are commonly stuck in the fight or flight mode. This makes it difficult to sleep, relax and restore health. This dysregulated nervous system is common even in the absence of any psychological stress.
Techniques to support parasympathetic activation (via vagus nerve) include diaphragmatic breathing, meditation, cold water exposure, gentle yoga, and being in nature.
Three years on there are now several hypotheses for possible causes of Long Covid that have been put forward. These include:
Mitochondrial dysfunction
Autoimmunity
Micro clots
Viral persistence
Organ damage.
One thing appears clear, that an overactive immune system and dysregulated nervous system is a common feature. We need more research on a global scale to pick apart this debilitating condition, understand CFS/ ME and to help the millions of people still affected by Long Covid.