Am I A ‘Long Hauler’? Living With Post Viral Syndrome

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‘Extreme breathlessness’, ‘fatigue’, ‘weightless’ and ‘brain fog’. ‘Limb aches’, ‘headaches’, ‘palpitations’ and ‘nausea’. ‘Fast heart rate’, ‘arrythmia’, ‘chest pain’ and ‘digestive upsets’. All these have been reported by a large group of people who say that they have been suffering for weeks and months after having Covid. This group say that they are ‘long haulers’ of Covid, living with the long term effects of a virus that we still know very little about. And I may be amongst this number. Am I a ‘long hauler’? I fear that I may be. 

 

Am I A ‘Long Hauler’? Living With Post Viral Syndrome

 

Am I A Long Hauler? - Here is my account of living with a possible post viral syndrome after this virus. Many people around the world are finding that it is taking months to shake off some of the virus long term symptoms, such as breathlessness, fatigue, brain fog, tachycardia, arrhythmia , palpitations, headaches, limb pain, nausea & digestion issues. Experts do not know why, but it is being called long tail covid. I fear I am one of these. Read about my symptoms & some possible things to try.

 

 

 

For the last 4 months I have been suffering with several unexplained symptoms. But have I even had Covid? Who knows. I haven’t had a test.

Back in March when lockdown began, it was very difficult to get a test. Even now, there have been reports of the tests not being reliable. They’ve not even been sent out in some cases.

And there are several reports that the tests aren’t even really effective. False positives and negatives are possible, even when experts take the tests. This article from John Wright – a doctor an epidemiologist at Bradford Royal Infirmary discusses the test limitations. 

So, even if I did have the virus back in February, would a test tell me anything now? Have I even had the virus? I may have had a ‘mild’ form of the virus. But who knows?

All the way along, experts have been saying that even if you get Covid, you may not suffer with the serious symptoms. There have even been ‘super spreaders’ who have the disease but suffer no symptoms whatsoever!

You may get the disease, but not suffer severe breathlessness, or even a cough. Yet, you may still have had the virus, and suffer the long term consequences of the virus being in your system.

I only know that I didn’t have the classic symptoms that were the only ones recognised back in March.

 

The Only Symptoms That Mattered In March

 

The Virus

 

These were the only signs recognised as being definitely signs of Covid 19.

  • A new continuous cough
  • A fever over 104 F
  • Breathlessness

Yet, 6 months on we are hearing every week of new things added to the list of accepted probable Covid 19 symptoms. Last week, a ‘rash’ became one of the accepted symptoms that you could have Covid.

Before that, the symptom of having no sense of taste or smell was finally accepted as a recognised symptom. Even though people had been reporting this lack of taste for weeks prior to it being officially accepted. 

So even now, experts are discovering more and more about this virus’s destruction of the human body. About how other systems of the body such as the heart and nervous systems are also attacked by this virus. And they have been discovering things for months, but these haven’t generally made it to front page news. 

British Medical Journal (BMJ) – Heart problems with Covid

 

Upshot Of All This : Some People Are Suffering Long Term Symptoms

 

And because of the way that the virus attacks the body there are a lot of other ways that people are suffering well after having had the virus. Even if they have had milder versions and weren’t hospitalised. There are a significant number of people who are still suffering long term symptoms, like the ones right at the beginning of this post. They are suffering from 

  • ongoing breathlessness
  • fatigue
  • chest pains
  • digestion issues
  • heart palpitations and fast heart rates
  • limb pains
  • nervous disorders (pins and needles / numbness)
  • brain fog
  • headaches
  • diarrhoes
  • sweating

See a study of a group of people who had the virus and all the post viral symptoms they are suffering

All these long term ongoing symptoms could be part of what is being come to be know as a post viral fatigue syndrome.

Post Viral Fatigue Syndrome

 

Being a long hauler is being compared to post viral fatigue syndrome. 

Some viruses stay around in your nervous system for years. Such as the Chickenpox virus, that can be triggered later in life – at which point you suffer shingles. Or the herpes virus, that produces cold sores when it is reactivated by, amongst other things, stress and sunshine.

Doctors have known for years that these post viral syndromes exist. Complications can arise for years after having a virus. And so experts currently suspect that this novel coronavirus is doing exactly the same thing. 

This would explain why for me the symptoms that I am feeling tend to go in waves. I can feel well for days, and the medication seems to be helping, but then I seem to have a few horrible days, when all my symptoms return. Other sufferers report the same. 

Some patient stories.

Baffling Observations From The Frontline

Perhaps the Covid virus is hiding there in my nervous system, just peeping out every now and again to test my body once more.

Again, the experts really do not know what long term effects this virus is going to have. Does it attack the brain and nervous system – hence affecting the heart and digestive systems via the vagus nerve? Does it cause inflammation?

 

Map

 

What Helps?

 

One thing I do know, rest really helps me. As does an anti-inflammatory diet. Reducing my sugar, getting more hydrated and not drinking alcohol really do help. And these strategies also seem to be helping fellow sufferers.

People have reported that taking supplements such as multivitamins and turmeric have also been useful. I do believe that turmeric is a great natural anti-inflammatory, which may help if this post viral syndrome is causing inflammation in our bodies.

Do talk to your doctor if you are thinking of taking any supplements and you are already on medications. 

 

My Story

 

In Early/Mid February I had what I assumed was my usual winter cold with chesty cough. As far as I recall I never totally lost my taste or smell. I had no temperature or breathlessness as far as I know. But as far as we had been told, Covid hadn’t really entered the UK at that point….

In late February my face had an allergic type reaction. It was bright red and blotchy. Although I had not changed anything in my make up routine, and not changed washing powder.

Around the same time, for a few days I suffered extreme migraine type headaches (I’ve never suffered from migraines). I experienced agonisingly painful pressure headaches that lasted for a few hours all day for a week. At this point in time I did take my temperature. I had a temperature of 99.9 for a few days. But no other symptoms.

March came and went.  

We Went Into Lockdown

 

Then in Late March/Early April I started having chest pains and palpitations that lasted all day. Squeezing pains in my chest and my heart doing major jumps all the time. I had major sweating through the night. And started suffering from fatigue. 

After suffering this for a week or so, I rang my GP.  Who at first attributed it to indigestion. She gave me stomach tablets.

The palpitations got worse. So the GP gave me beta blockers after a trip to A&E where they checked for a possible heart attack. An ECG showed extra heart contractions – I was definitely having palpitations. 

I never had a fast heart rate. But I feel like I’m having huge arrhythmia all the time. I haven’t dared exercise. Walking makes it worse and I get a tight chest. Before lockdown, I used to walk a lot. But I daren’t do anything right now!

I asked for a cardiology referral but was told that there are no appointments possible due to Covid. Right now, I feel like my GP is just not listening. I had a 24 hour heart trace 2 years ago and my GP keeps quoting that at me, even though my symptoms now are FAR more severe! She has just attributed it all to anxiety. Which is very little help when i know that I am having physical symptoms.

Beta blockers helped for a time but in the last week my palpitations have been horrendous again. Palpitations back in force. Chest pains and occasional racing heart for few seconds. I went to A&E again and they told me nothing was found, but have given me an urgent cardiology referral.

I asked my GP and in the ER “could it be COVID related?” –  only for my suggestion to be pooh-pooh’d.

 

Are You Still Infectious If You Have Long Haul Syndrome?

 

According to all the information I have read – no. But I am still wearing my mask.

 

Facebook Support Groups

 

Facebook

 

Thousands of people are sharing their symptoms and stories online. They discuss their long term battles with Covid. 

Facebook groups can be a great venting place if you are having problems. The Long Covid Support Group has some great members. Some have had a positive Covid test diagnosis. Whilst others (like myself) only suspect that there is a correlation between their current ongoing symptoms and having had the disease in the past.

And this is part of the issue for me. I didn’t consider having a test back before I had my symptoms, because I am still not sure whether I had Covid. At the end of the day, I didn’t have the symptoms then that warranted a test. I didn’t end up in hospital. Yet, as I explained earlier, I could have had a mild form of the virus with only the mild symptoms!

Interestingly, last week it was announced (quietly) that the government were going to invest into researching the long term effects of Covid. Maybe they realise that this long term syndrome may become a real problem for the long term health of the nation.

The Phosp-Covid Study will only study people who were hospitalised who are now having long term problems though – so it is of no real help to me.

Surviving The Virus May Just Be The Beginning

 

So What Can I Conclude? Am I A Long Hauler?

 

I am no closer to knowing what is causing my symptoms than I was back in April. With hospital waiting times growing longer, my wait for a heart scan appointment seems like it will be a very long one.

Again, I just don’t feel taken seriously, even when I am having pretty severe palpitations and chest pains. A&E have told me there is nothing wrong. But they cannot do the relevant scans to check on what is causing this. And I am afraid of the worst outcome when the worst pains come.

Am I a long hauler? This post I fear will read a little like a brain dump. I have been reading so much around this subject since I first had my symptoms that there is so much that I want to put into this post. And yet I also feel like it isn’t my place to say anything, almost as if I shouldn’t be writing a post about such a medical issue. 

What I will say is that I am not an expert. I have previous medical knowledge from my past career. And a very good eye for sifting through journals and picking through all the data. But I would advise you to do your own reading, from reputable sources. 

It just looks and sounds to me as if there is still so much that we do not know about this disease that we are all living through. Even the experts are learning. 

 

Have you been affected by any of these symptoms? I would love to hear your stories. I hope this post has helped. Do comment below, or find me on social media.

 

Am I A Long Hauler?

 

 

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