Chronic Fatigue Syndrome

As individual as you are

I have gone from having "extremely severe" to "mild" chronic fatigue syndrome. I'm still improving and have days where I'm not so good, but its taken me from a life not worth living (my own opinion) to doing most of the things I want to do. It's been a slow progress, but worth it.

I'm sharing with you what I have come to understand having been researching CFS for my own purposes over the last 9 years. I've gathered information (and tried most) from many different people on the internet and books. There are many different view points according to who you speak to. These things have helped me and others, there is hope and you can improve.

What seems to be thought is that CFS/ME, fibromyalgia, lupus and now long covid are all pretty much a variation on the same thing: a group of seemingly random syptoms, that are labeled different illnesses depending on the last catalyst that "broke the camels back". There is probably a genetic link and I've always had "something" not quite right (as have some of my family mmbers), but that hasn't stopped huge improvements being possible.

Our autonomic nervous system has blown a fuse and the systems in out body that produce energy (our mitochondria) are now working at a reduced rate. If you think of your mitochondria (which are in every cell in our body) as batteries, they are not fully recharging when you are resting. You can appear to rest as much as possible and they are not getting back up to full power. This can effect every part of your body and is different for everybody, but also seems to chop and change at different times within one body over time ( just to keep us on our toes!) Because its a whole body experience, symptoms can be vast and effect every organ or just some, with Fatigue being the worse for many people. Symptoms may include: anxiety, social anxiety, depression, feeling of overwhelm, heart palpitations/arrhythmia, brainfog/ memory loss, sight problems, sore eyes, sensitivity to sounds, light or smells, hearing loss, tinnitus, muscle and joint pain, sore throats, UTI's, reoccurring infections, rashes, skin sensitivity, itchy skin, heart burn, IBS/ gastro/ bowel problems, weakness, headaches/migrane, insomnia, fatigue, tiredness, nausea, POTS, dizziness, fainting, high/low temp and chills, numbness, food/ environmental sensitivities.

Many illnesses have Fatigue as a symptom. This can often be one of the aspects that really impacts how life is enjoyed (MS, Parkinsons, Cancer, sleep disorders, hypothyroidism, IBS, Arthritis, Diabetes, hypermobility, menopause problems etc). Many conditions may be helped by the following suggestions, but its important to take advice from your doctor especially if a specific health problem has been found.

Your GP or even a CFS specialist working within the NHS can only look at tests and treat within the NICE government guidelines. They should give you blood tests to check for vitamin/mineral deficiencies, allergies, inflammation, hormone imbalances and sometimes other diagnostic tests. If these come back as mostly "normal" then they can prescribe medication for specific symptoms, but otherwise haven't got anything else to work with.

They may send you to see specialists in whatever your worst symptoms may be, but unfortunately this often ends up "chasing" symptoms around the body, as its not actually getting to the root of the problem. Personally once I understood they did not have a medication or treatment protocol to help, I had to take responsibility for myself. This may feel like the end of the world, and a lonely place to be. There is nothing worse than waiting to see different doctors and pining all your hopes on them making you better, only to find they can't help. But you now have the opportunity to help yourself, which can be liberating as there are many lifestyle changes you can choose to do.

The way I've had it explained to me is: we all have a personal "bucket of stress", which our body/brain can cope with. Many different stressors fill this bucket; emotional toxins from our jobs, where/how/who we live with, toxins we breath/eat/administer (alcohol, medications, vaccines, drugs, food) to ourselves, mental health, traumas, coping mechanisms, infections, viral illness, hormonal imbalances. So, we can keep filling the bucket with all these things and then one day a tiny little stress is the last straw that pushes our system over the edge. So it can appear that this is the main problem, but when you look into it you've been on the edge for sometime, maybe years. The body then thinks it's under constant attack and is under flight/fight/freeze, pumping out cortisol and adrenaline all the time. As it doesn't turn off, our body is never getting into rest and recuperate and so the mitochondria (batteries) can't recover. If you can get rid of as many stressors that your body is experiencing and teach your body/brain that its safe again, the flight /fight/freeze response can be turned off and you can go back to your "batteries" filling up again as they should. You need a huge lifestyle change.

Accept you're ill, but keep hopeful and be positive you will get better. If you had a broken leg you wouldn't still try to walk on it. Pull back on everything that is using your energy up ( physically, mentally and emotionally).

All types of medicine agree that pacing is the very first thing you need to do to improve. It takes a long hard look at yourself as somethings are very difficult to let go of but, for the time being you must stop being a perfectionist or people pleaser and do less of everything. I've had it described to me as whatever you think you can do, only do 50% of it. Tell your friends and family about it and try to explain so they can be more sympathetic. Its a tricky one as its an unseen illness, but don't hide it and don't push through, its not like having a late night and making up for it with a lay in at the weekend. Be patient, even people who have been ill for 30 years have and do improve. If you've been ill for only a few months it'll be easier and quicker to get better. Use disability aids if needed (wheel chair, mobility scooter) to help extend your energy window so you are able to leave the house of possible. This is only a tool for the time being, to help get you out of the house. Sit down to wash/shower/prepare meals and plan trips around your home to use smallest amount of energy.

Fatigue often makes us muddled, confused, angry, depressed, anxious sad. Our brain uses a huge amount of energy, so if your mitochondria ( cell batteries, which are everywhere in our body/brains) aren't working properly, your brain conserves energy by not remembering things and making you a bit muddled to use the energy for other important things like the heart, liver and lungs etc.

It also gives very varied symptoms that can be scary. Once you get some energy back they are very likely to be lessoned or alleviated. The fear of these symptoms make the whole thing worse as negative emotions make us more tired, so if at all possible remind yourself it's just a faze, you can and will be better.

A whole food (home cooked) diet gives the most amount of vitamins/minerals while lowering the amount of unneeded added toxins that we are trying to avoid. Low sugar, low carbahydrate, lots of vegetables, some good fats, and protein. Sugar makes your body work a lot harder and messes with your blood sugars so avoid it. Alcohol also makes your body work hard and ruins your restorative sleep. Wash and peel fruit and veg and have organic where possible (helps lower the pesticides, herbicides and antibiotics you're ingesting).

Regulating your blood sugars, stops insulin levels going up and down all day. This can help mood, but also alleviate feeling sick/faint/headachy on and off all day from blood sugars spiking and dropping. Take a look at The Glocose Goddess on here or on Channel 4 for tips.

Dr myhill is a leading specialist in the UK for fatigue illnesses and recommends a Paleo/Keto diet. Her book " Diagnosis and treatment of chronic fatigue syndrome and myalgia encephalitis " has loads of information. This is what I find works for me.

When you feel so ill it can feel difficult to manage what you're eating. Easy food like one pot casseroles (slow cookers are great) take very little effort. Use frozen, ready chopped vegetables and put choosen protein in to cook. Make a large amount and then "whizz up" with extra water for soup on another day. Boiled eggs, tinned sardines, hummus/dips with raw veg (literally wash veg and scoop up dip), pork scratchings, natural yogurts, berries, dark chocolate. Drink good quality filtered water and make sure to have enough electrolytes (especially if you have dizziness/ fainting/low BP).

Encourage detoxification: saunas, infared sauna, Epsom baths/ foot soak, lymphatic drainage self massage, rebounder exercises, exercises like Qi gong, gentle yoga, stretching and walking (only within pacing capacity). Drink plenty of fluids to help flush through toxins. If you are constipated try to get this resolved as your body needs to be getting rid of its by products.

Perrins Technique by Dr Raymond Perrin is very useful if detoxification seems to be a problem. Some peoples bodies aren't very good at clearing out the "rubbish" in their system. Keep moving as the lymphatic system needs movement to work for us. Even if all you can do is pulse/move your feet/arms/legs/hands and tighten your bum cheeks this will help. Also sit up as much as possible to help lymphatic system amd especially if you are prone to chest infections.

Personal relationships, past traumas and upsets we've not dealt with can show up in the body as pains and ailments. Working out why you use unhealthy food choices, alcohol, drugs and smoking to mask problems. See therapist or if you are very self aware there are many self help books. I like cleaning your mental mess by Dr Caroline Leaf. She teaches how to use your brain differently and break habits with our thinking.

As our body has become hypersensitive in many ways, pain management using techniques such as visualisation, hypnotherapy and meditation may be helpful. The Fibro Guy has both a course and free content on here. It teaches the mind/ body connection when in comes to pain perception and how to calm it. The Chrysalis Effect is an online recovery program which I found help too.

Learn to relax and spend as much time as possible "actively resting".

Avoid as much as possible anything that makes you angry or upset. Listen to music/stories, read (audible app is useful if too fatigued to read or your eyes aren't working properly). Learn to meditate (guided meditation is often easier), restrict social media. Write in a diary daily as its good to track what you are doing, but also to encourage yourself to think about positives in your day and be grateful for small things as it helps release feel, good hormones. Try and fit small things into your day that give you dopamine hits (without being bad for you). Get outside even if its just sitting in your garden as much as you can.

Watch and listen to positive YouTube videos on people who have recovered or improved. They give loads of advice from people who have got better. I have put some below.

Your circadian rhythm is probably not working properly, there are ways to help get it working again. I found this book very helpful Sleep Smarter by Shawn Stevenson. It guides you step by step on how to get your sleep back on track, using mostly lifestyle changes. Lots to do with natural day light, avoiding blue light in evening, movement, and eating. Our brain releases toxins at night and the Glymphatic system cleans it out. So its not just rest/ healing that we get while sleeping its also when we get "cleaned up", ready for the new day.

Magnesium spray may be helpful.

Learning breathing techniques and or have oxygen therapy. There are many hyperbaric chambers around in the UK. Some are charitable based so are more cost effect. Some in private clinics that have single person small chambers. Wim Hof method of breathing can be good for improving immune system, lowering inflammation amd reducing stress. I found I could only do it once I was quite a bit better though. It's free here. There are other types of breathing (think more yoga based) which get you using all of your lungs/diaphragm which also calm your nervous system.

Improve your gut by making your own "yogurt" which replenishes specific bacteria we've mostly lost from our guts because of diet, pesticides and over use of antibiotic. Super gut by William Davis, has all the info needed about diet and probiotics and what to eat. Find out more.

Optimin gut health keeps the good bugs where they are needed and doing the job of helping us use the vitamin and minerals from our diet and stops unwanted toxins leaching into our blood stream. other probiotics ive found helpful are Optibac Probiotics and Lactobacillus Reuteri.

Nerva app is an app to improve digestion and IBS problems using education and mindfullness.

I've recently learned Gentle release therapy, which incorporates Chinese medicine, Acupressure, Reflexology, and spiritual aspects.

Beljanski foundation sells RNA fragments and an anti viral that has been used in cancer and Aids patients for 30 years. They are available from America and although expensive I found them helpful to regain a bit more improvement. There is a study being carried out at the moment for people with long covid.

Limit exposure to wifi and screens, plus get every opportunity to ground yourself outside with bare feet. There's lots of info online about both. I've recently brought a grounding sheet which I sleep on, so waiting to see gradual improvements.

I like autoimmune institute advanced multi as its 3rd party tested and has lots of vitamins and minerals, which work in synergy together and that help energy production that other supplements don't have.

Vagus nerve stimulation can help calm the vagus nerve which is involved in the flight/fight/freeze response. ( breath work, singing, humming, auricular therapy, etc).

Binaural beats is a specific sort of music that slows your brain waves, so is calming, "white noise" can also be useful especially if you have Tinnitus.

A mixture of red light/near infared/far infrared therapy. They are all different wave lengths and work slightly differently, but are involved with detoxification, helping mitochondria, and are anti inflammatory, so worth investigating.

Books to listen to or read are :

  • Adrenal Fatigue: The 21st Century Stress Syndrome
  • The Ultimate Guide To Red Light Therapy
  • Doctor Yourself by Andre W Saul
  • Limitless by Jim Kwik
  • The art of the Impossible by Steven Katherine
  • Decode your fatigue by Alex Howard
  • The oxygen advantage by Patrick McKeown
  • Cure by Jo Marchant
  • Breath by James Neston
  • What Doesn't Kill Us by Scott Carney
  • Sustainable Medicine, The Infection Game and Ecological Medicine by Dr Sarah Myhill
  • The Scar That Won't Heal by Patricia worby
  • Atomic Habits by James Clear
  • Mitochondria and the Future of Medicine by Lee Know
  • The Energy Pardox by Steven R Gundry
  • How To Be Sick by Toni Bernhard
  • Your thyroid and how to keep it healthy by Dr Barry Durrent-Peatfield

Websites and Online courses:

  • The Chrysalis Effect
  • Dr Myhill
  • The Fibro Guy
  • Beljanski

Youtubers I like are:

  • Yogi Bryan for down to earth and sometimes sweary guided meditation and yoga
  • Lee Holden for Qi Gong exercises
  • Pura Rasa for more traditional meditation
  • Glucose Goddess for tips on eating to regulate your insulin levels ( also now on channel4)
  • Raelan Agle and CFS Recovery both have recovery stories and suggestions

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