New hope for Long Covid, Fibromyalgia and Chronic Fatigue Sufferers?
Long read. Please note – the following is just an opinion piece from personal experience and observation, from meeting people who have experienced similar symptoms and from reading around the subject. I am not a physician and any advice below is not intended to be medically prescriptive in any way. If you have suffered from Covid-19, Long Covid or similar illness, I share and signpost to some information below from relevant specialists and researchers. Some of it has helped me considerably. If you are suffering from after-effects of Covid-19, it is advisable to consult with you GP in the first instance.
Have you experienced strange symptoms in the last two years that you never had before?
Source: The Long Covid Handbook - Medinger & Altmann
Extreme Fatigue (includes sleeping for excess hours during the daytime as well as night)
Ongoing muscle, joint aches and pains that don’t seem to be helped by standard physiotherapy or corrective exercise
Severe difficulties with breathing – sudden loss of natural athletic ability
Heart palpitations and/or chest pains
Sudden loss or blurring of vision, paralysis, feeling sick – stroke-like symptoms
Severe loss of strength, stability and balance, loss of muscle and nerve motor control
Night sweats and random fevers – including sweating in different parts of the body
Strange electrical burning sensations around specific joints of the body and ‘pins and needles’
Post exertional malaise – worsening symptoms after exercise
Difficulty sleeping
Headaches or migraines
Sudden severe dizziness
Tinnitus
Loss of taste and/or smell
Stomach, groin or intestinal pain
New or worsened skin problems such as rashes and blisters
Depression and/or severe anxiety
Some of these symptoms (particularly those related to the heart and lungs) could be a matter of life or death. So, if you still haven’t spoken to a doctor, then I urge you to seek urgent medical attention.
A strange illness in early 2020
Each year, after Christmas I usually pre-plan my fitness goals and challenges for the months ahead. This time, I had decided to enter a local event – the challenging Leith Hill half marathon. However, early that year something wasn’t quite right. I had some sort of seasonal cold or flu-like illness but I wasn’t just experiencing the usual symptoms. I was also experiencing regular episodes of severe vertigo, dizziness and fatigue. The vertigo episodes would last for about 20 seconds at a time and leave me feeling faint for an hour or more afterwards.
Over the January weeks, I gradually I got some of my fitness back and ventured on the occasional run but during those early runs I felt wiped out and had very low energy. The hilly running routes around Dorking were much harder than usual. My joints were at times painful and achy and my breathing was more laboured so I was forced to stop and walk on many occasions. I asked myself, had I just become very unfit?
By late February 2020, a bit of tenacity got me to the top of Leith Hill and back again – just about!
Shortly after that, the Covid-19 pandemic was sprung upon us.
Here’s a little clue about my physical health at the beginning of 2020. I was 14kgs (over 2 stone) heavier than I am now. My weight had been frustrating me for a number of years. I lost some natural athleticism and experienced more injuries due to the burden of extra weight. The depressing realisation about the onset of middle age was worrying me. What followed after that was my own, physical lifestyle change.
2020 Covid-19 Pandemic lockdowns – Conquering the plateau
The Spring/Summer of 2020 was a ground-breaking time. Despite the anxiety, confinement, rules and uncertainty of the pandemic, I managed to a find an answer to my 15-year struggle with my weight. (more of that another time…)
By the end of November 2020, not only had I lost over 2.5 stone (the lowest it had been for about 30 years!) but I also felt my fittest. I had more energy, more ability to achieve athletic personal bests.
Christmas 2020 was looming. I had done so well in the previous 9 months that I thought if I ticked over with some athletic training over the festive break, I could enjoy my favourite pastime – eating and drinking a little more, without it having a detrimental effect on my body.
Too much of a good thing?
In the early New Year of 2021 I went for a 10k run but it didn’t feel right. Had I overtrained my muscles? I didn’t think I’d done anything too damaging but the aches and pains came back in a brutal way.
Due to another lockdown, I returned to leading some of my group exercise classes online from home. But it was far from easy: I had to avoid a number of movements. I made the excuse that ‘perhaps I had overdone the Christmas food and drink.’ Too much Port and cheese?
Have another look at the Long Covid symptoms listed above. I experienced about 80% of that list. By this stage I was testing regularly for Covid-19. But nothing came back positive.
During January 2021, it felt like I had turned into an old person overnight. I struggled to get up off the sofa unassisted; I lost so much strength and ability; my balance, coordination and core strength which had been fine a few weeks prior had virtually disappeared. I felt semi-paralysed. I took some physiotherapy advice. Usually this works to a tee – but instead I was getting more aches and pains everywhere, not just in one high-lighted zone. Was this something more sinister than a musculoskeletal issue? I had sleepless nights – complaining that the mattress wasn’t right, I was suffering from severe body aches and back pain alongside strange body flushes and sweats. During the day I would try to catch up on sleep and sometimes find myself gone for 3 hours or more.
The worst phase was during January and February. I attempted to push myself outside to see if I could gently exercise my muscles back to life and kick out the symptoms. But due to the muscle and joint aches I could hardly lift a knee. Little did people know, they might have seen me back up on my feet, but secretly I was suffering.
I tried to jog for short distances – and another problem arose: I could hardly breathe deeply enough. There just wasn’t enough air getting from my lungs to my muscles. It felt like I had numb/dead muscles.
During February, I decided to get a Covid antibody blood test done. Interestingly, the results came back positive, proving that at some point my body had encountered the virus. Who knows, it’s possible I had been asymptomatic.
I was concerned for the health of my body due to the serious pains near my kidneys so I visited the doctor. Little was known about Covid-19 or Long Covid at the time. The UK government focused attention on three symptoms to look out for in terms of spreading the virus. But what about the other symptoms experienced if you got the virus? What if the virus was hitting other key organs such as the heart, lungs, kidneys, liver as well as the immune and neuromuscular systems?
Never, ever give up
UK standard health research and government advice on Covid-19 was very limited at the time, so I started looking for clues from reputable sources elsewhere, e.g. Harvard Public Health and John Hopkins’ University medical faculty in the USA. Professor Tim Spector’s ZOE Covid-19 team in the UK were also asking the right questions at the time.
I was determined not to lose my original fitness and health gains from the previous year.
It did gradually get better but I had to put my early 2021 athletic goals on hold and be patient.
I found out I wasn’t the only person to suddenly experience these odd debilitating symptoms. A whole army of people online were crying out and seeking help from top health professionals who had an interest in figuring out the whys and hows.
Interestingly, a number of the symptoms above are also experienced by ME/Chronic Fatigue Syndrome and Fibromyalgia sufferers. Some researchers are now correlating some of the after-effects of Covid-19 to other autoimmune-like diseases. If you don’t know about autoimmune disease it is an increasing western world problem and it’s growing fast, even in the UK. Auto-immune conditions include rheumatoid arthritis, multiple sclerosis among 80+ other types.
It’s possible that thousands of people are still undiagnosed and yet suffer from an array of symptoms.
Nearly two years on, do I still have Long Covid?
So far, I’ve been very fortunate. The worst of my symptoms lasted for two to three months and returned on and off over the following year. Once in a while, I feel wiped out with fatigue but overall, I feel hopeful that I’ve turned a corner and that my symptoms have largely ceased.
However, I have become aware when my body is giving me warning signs, and prompting me to manage my lifestyle.
My point here, as suggested earlier is to ‘never give up’. It’s very easy to give in to a debilitating, long term chronic illness and think that medical science has no answers to help reverse the condition. But in some cases this isn’t the complete truth.
What have I learned since?
Remember that this is an opinion piece. Even though there is still limited medical evidence, advice and help available on Long Covid, ME and auto-immune illness, or you might feel frustrated waiting long term for a correct referral; you don’t have to suffer in silence. There could be simple, non invasive things you can do to reduce the severity of the symptoms of fatigue etc. In my own case, I tried to make some informed choices and find help from the top doctors, researchers and global medical institutions online. These are the simple things I’ve learned about Long Covid:
A ‘one size fits all’ approach may not be the answer
Covid-19 could possibly exacerbate pre-existing auto-immune illness or even lead to it
Symptoms vary, and for others they won’t notice anything at all. This may depend on our genetics and previous health history.
Exercise needs to be considered very carefully. It’s important not to push yourself too hard if you experience Long Covid or auto-immune health complications
Immune system health (including auto-immunity) is a realm of science that needs more exploration by doctors and researchers.
Nutrition and environmental factors may have a strong role to play if we want to reverse the negative effects of illness.
The chronic high stress of our modern lifestyles may contribute towards Long Covid and other auto-immune health problems
Enough good quality sleep and rest is vital for our bodies to reset.
From a lifestyle (exercise, nutrition and general wellbeing) point of view these are my tips:
How to exercise if you experience Long Covid, ME, Fibromyalgia or similar
Learn from my mistake – don’t try and exercise your way through the illness (even if you are an athletic type). Your body is saying ‘STOP’ for a reason. By trying to ‘jog’ your way back too early or do other intensive exercise, you risk adding excess pressure to your immune system and this can delay your recovery.
Simply, stop all exercise from the moment you experience severe fatigue symptoms and painful aches around the body. Its’s very important to take rest and give your body a chance to recover.
Are there any exercise methods that could work?
There are some schools of thought that slow, deep breathing could help reset the autonomic nervous system which in turn may assist recovery from Long Covid and similar related auto-immune illnesses.
NOTE: I’ve worked with a number of fibromyalgia and ME sufferers in the past. From personal observation – even if you choose to exercise at a ‘moderate’ intensity as opposed to vigorous, it is unlikely to be of benefit. You may be more likely to experience exercise malaise, ongoing muscle soreness and fatigue - such is the nature of auto-immune dysfunction. I would recommend that it is more appropriate to focus on good nutrition and rest before attempting to start an exercise programme.
If you do plan to exercise again, a better approach would be to start with very low intensity sessions such as mindful breathing exercises or a course of gentle movement that involves focused breathing such as Qi Gong.
If you’re an athletic type (like me), who’s desperate to get back to fitness, it’s advisable to take a very steady progressive approach. This could take a number of weeks, and lots of patience. If you don’t know how to do this, come and see me and we’ll make a plan.
Is there such a thing as very low intensity, interval training?
Unlike high intensity interval training (HIIT), this may mean short bouts of low scale exercise for 20-30 seconds, followed by rest and repetition. You’re looking at heart rates levels below 120bpm.
Dr Boon Lim, a London-based cardiologist, has suggested that this type of exercise could be of use to sufferers of Long Covid, and may be a method of potentially resetting the autonomic nervous system. though more needs to be proven in the long term.
If you’re seeing some improvement from these early practices of low intensity movement, then it might be worth considering the next phase: slowly introducing moderate intensity exercise. If in doubt when this is appropriate seek out a professional fitness specialist to assist you…
One of the most unpleasant and potentially serious side-effects of Covid or similar auto-immune diseases is severe breathlessness or the limitation of oxygen reaching your muscles. Your body feels like lead. It feels like your ‘personal battery’ is no longer optimally charged, and you have less than 10% remaining For all of you who might have experienced ME or similar - I know how you feel!
If you can’t breathe very well, consult with your doctor and seek referral to a cardiologist or pulmonary specialist.
Some medical reports suggest this limited oxygen uptake could be linked to micro-blood clotting and viral load near the lungs. It could be more sinister even for the young, fit and healthy. Get help!
Long term exercise advice
Remember, strong sports medicine evidence points out that moderate intensity cardiovascular exercise is absolutely vital for the working condition of our cardiovascular system and is the best type of exercise for longevity. 150 minutes per week - recommended
It has so many benefits – from the reduction of blood pressure, lowering of cholesterol, better functioning of the heart and blood vessels, burning up harmful sugars and triglycerides from our blood stream and so much more. So, it is important that you can get back to this type of exercise once you’re able. If you’re not sure how to do this, get in touch
The role of good nutrition
“Let food be thy medicine and let thy medicine by thy food.”
Hippocrates was a Greek physician from over 2000 years ago - traditionally known as the father of medicine. His wisdom has perhaps never been more relevant. Our 21st century eating and drinking habits have a much greater impact on our health than we may realise.
I gave a clue at the very beginning of this opinion piece. It was immediately after the festive period of 2020-21 that my health deteriorated very dramatically. Compared with previous years, it wasn’t a particularly ‘bad’ Christmas period of overindulgence. However, I can attest to increased sugar intake (port, sloe gin, wine, biscuits – cakes!), increased dairy - which I know I’m personally intolerant to and eating lots of cured meats etc.
What do all of these food and drink types have in common? They are histamine inducing, generating an immune response. For more knowledge about this watch Dr Tina Peers’ clip about ‘mast cell activation syndrome’ Naturally, our bodies should be able to reduce histamine levels fairly effectively – but perhaps, if like me, you have been prone to seasonal allergies for most of your life, you might have noticed an increase in histamine and allergy symptoms in recent years. In many cases, it appears Covid-19, like many auto-immune illnesses can lead to increased food and drink intolerance. When you consume histamine rich products in excess they could be heightening immune responses within the body and making our symptoms worse.
Although discussed by many top medical specialists, admittedly there isn’t conclusive evidence about this yet. But I’m certain it will be talked about much more in the future.
For me, reducing and managing my intake of high histamine food and drink certainly worked. When I have taken a temporary rest from the histamine-inducing products, my symptoms have improved considerably. When I have more than a moderate amount (e.g. in one weekend - my symptoms heighten considerably)
Gez Medinger also takes note of this in his recent collaborated book - The Long Covid Handbook. So if you’re a Long Covid or auto-immune sufferer it may be worth looking into this.
Low vitamin D levels and other micronutrients
Since the start of the Covid-19 pandemic several global studies have shown that there appears to be a correlation between vitamin D deficiency and more severe Covid symptoms. It also linked low Vitamin D levels to auto-immunity (something for all Long Covid, auto-immune disease, and chronic fatigue sufferers to consider).
The NHS recommends that we all take a vitamin D supplement during the Autumn and Winter months, and that those of us with darker skin take one all year round. Are we actually doing this? Are you someone who works mostly indoors throughout the year? Consider for a moment, how many hours of sunshine exposure you’re getting each day. That’s another reason why I recommend all my clients also try and find some time with me outdoors whenever possible. Get some sunshine when it’s available!
If you have Long Covid, there are other vitamins and minerals to consider supplementing with, such as B vitamins, C and zinc and magnesium but always have a chat with a pharmacist or doctor first to ensure they are suitable for you and would not interact adversely with any medications you take.
Conclusions
Sorry, I warned you, this would be a long read!
But this is written for anyone who suffers with Long Covid symptoms or already experiences ME, Chronic fatigue and similar related Auto-immune diseases. I also wanted to share this because of the sheer number of people I have heard from in the past year who have also experienced ‘strange symptoms’ they wouldn’t normally have. There is no harm with becoming more ‘in tune with your own body’, journaling your symptoms and to question with your doctor.
All I have stated is what has worked for me. If you want to learn more, come and have a chat – and I can signpost you to some very good research. I’ve also listed a few useful resources below:
Be patient, have hope and never rule out the possibility that autoimmune illnesses and Long Covid can be dealt with.
STOP moderate and intensive exercise if suffering badly. This is not a time to try ‘beasting’ style group workouts. REST and consider mindful breathing practice and easier exercise methods such as Qi Gong
Gradually increase moderate cardiovascular exercise when ready. If in doubt, speak your friendly, local neighbourhood fitness coach : )
Take the recommended daily allowance of vitamin D throughout Autumn and Winter and again talk with your doctor if you think you might need a higher dose or supplementation all year round. Also learn about the other vitamins and minerals that might help you at this time. Despite new evidence pointing that some supplementation doesn’t work - this could be a time that it actually does.
Eat a diverse diet that is high in plant varieties alongside your usual macronutrients.
Consider a food and drink diary and make a list of histamine-rich food and drink that you’re consuming in excess. If your normal diet is high in ultra-processed food, this won’t help you at all. So, consider changes – however small they might be.
This is not a good time for high levels of work and family stress. If you’re happy to compromise your life and long term health, so you end constantly bed-ridden It will place more pressure on your immune and long-term health – so take time to balance out your lifestyle. Come and chat with me (a Coach) if you struggle with this concept.
The science is constantly being updated – so link up with the top researchers in the fields of immune medicine and stay up-to-date.
Finally - BELIEVE that you can turn this around!
Some useful resources
The Long Covid Handbook – Gez Medinger and Professor Danny Altmann, 2022
While not the definitive answers, the authors listed above have pulled together some clear ideas on dealing with Long Covid symptoms. Some of the research for this book also comes from doctors and other health professionals who have also experienced Long Covid themselves, or have made observations among their own patients. They acknowledge that the research and evidence will continue to evolve and be updated.
Also check out Gez’s Youtube channel - full of informative discussions over the past two years with doctors and global health professionals about Long Covid and the latest research and issues coming to light.
Help for Long Covid – with Dr Tina Peers
Click above for a useful chat with BBC journalist Nicola Haseler about some nutritional methods that may assist with reducing Long Covid symptoms. A long chat between integrative medicine specialists is very useful too - see below:
Dr Mark Hyman and Dr Leo Galland chat - Long Covid, 2023
Brave New Medicine – Dr Cynthia Li, 2019
An interesting, honest read by an originally sceptical doctor who experienced debilitating autoimmune disease first hand - and includes some of the methods that she used to reverse her condition.
The Autoimmune Epidemic - Donna Jackson Nakazawa, 2008
This book explores the ‘whys’ and the issues surrounding modern living and autoimmune disease.
