Waking up
Let us start with getting up in the morning. It should be morning, not after midday. This is very important, as getting into a reasonably normal sleep pattern is essential. One should aim at getting up every day, and even in severe cases one should try to wake up at the same time, preferably in the morning.
The sleep-awake cycle is controlled by the hypothalamus, with the pineal gland in the brain which produces the hormone melatonin stimulated by the dark and supressed by how much light passes through the eyes, which is why some people refer to the pineal gland as the third eye. Dark and light stimulate the production of melatonin and serotonin respectively. The melatonin/serotonin balance is crucial in maintaining a good diurnal rhythm and helping us stay awake during the day and sleep at night.
In the winter the darker days aggravate the rhythm and some people suffer a drop in serotonin and become more depressed, leading to what is known as SAD (seasonal affective disorder).
Also, many ME/CFS and FMS patients sleep much worse in the summer as they have too little melatonin and too much in the winter. To help the balance in winter, a SAD light which mimics daylight hours does often help. So, if you have this problem, a SAD light is important first thing in the morning at dawn for an hour, and another hour later on in the evening at twilight/dusk is also recommended.
Getting out of bed
If this is possible always alight from the bed in stages; never jump up as the control over blood pressure is often disturbed and experiencing dizziness when getting out of bed is common. So, before sitting up make sure you are lying on your side and slowly swing your legs over the edge of the bed and gradually sit up at the side of your bed where you should remain for a minute or so before slowly standing up. If you suffer from POTS you should stay seated for at least three minutes before trying to stand up.
Shower in morning
This should never be too hot or too cold as the hypothalamus is the thermostat of the body and too extreme temperatures will stress an already overloaded part of the brain. Make sure any soaps, shampoos and shower-gels are not too perfumed. It is worth buying the least allergenic products recommended by your local pharmacist even if they are more expensive.
Try to avoid hot baths at any time. They are worse than showers as besides overheating the body, the muscles will relax while the spine is in an unhealthy position unless you are able to float in the bath. Sitting in the bath places extra strain on the lower back and can aggravate any postural problem. With ME/CFS and FMS it is double trouble as the heat and the postural strain together exacerbate any inflammatory changes in the spine, which creates more toxicity within the central nervous system.
Comfortably cool baths that you can lie in are healthier for ME/CFS and FMS patients and sometimes relieve many of the symptoms, but if the water is too cold it will aggravate the condition by increasing tone in already tightened muscles. If you are going to try cool baths, make sure that when you are lying there you are not shivering and that you are comfortable. Dr Perrin recommends about 10 minutes at a time.
Showers are usually better for ME/CFS but if the patient feels dizzy or weak standing and does not have a bath then they should use a shower chair. If a patient constantly feels faint or actually faints in a hot shower and the heart rate frequently races, then again suspect possible POTS.
Having frequent short cold showers of around 16–23°C may also be of benefit to some ME/CFS and FMS patients. As with cool baths, moderately cold showers have been shown to reduce pain by stimulating the production of endorphins which reduce pain without causing any harm.
Cool showers and baths have been shown to stimulate the locus coeruleus in the brain stem which forms a major axis, together with the hypothalamus, in the control mechanism of the neuro-lymphatic drainage system. In health this axis switches off during the night in deep restorative delta-wave sleep.
It has been shown that in ME/CFS, delta waves are produced in the brain throughout the day with the axis switching off at the wrong time leading to the patient feeling sick and exhausted as the toxins drain out of the brain. To reverse this problem, we need to stimulate the locus coeruleus during the day. So in brief, comfortably cool hydrotherapy in the morning will greatly help some patients.
Exposure to cold typically causes activation of the sympathetic nervous system (SNS) which can cause problems with ME/CFS and FMS since the sympathetic nerves are usually overloaded. However, small amounts of stressful or harmful agents can sometimes be beneficial. This phenomenon is known as hormesis. Similar to the body’s immune response needing to first be exposed to an infectious agent before it builds an immunity, as seen in vaccination, it is believed by some that exposure to cold can temporarily reverse autonomic dysfunction and therefore improve symptoms.
Try the hydrotherapy once in the morning for just a few minutes, either lying in a cool bath or having bursts of a cold shower for a few seconds at a time over a couple of minutes. If it brings any relief, continue each morning as long as you always feel well afterwards. If it worsens your condition in any way, then immediately stop as it isn’t for you.
Dr Perrin highlights the fact that every ME/CFS and FMS patient is different, and unfortunately people respond differently to any stimulus.
Getting dressed
Loose clothes that are easy to slip on and off are recommended as clothes that are too tight may restrict circulation of blood and lymph and lots of buttons etc can place strain on the hands that do get fatigued and sometimes become very painful, especially in FMS. For women, tight bras are a definite no-no, especially tight underwired bras, which do place extra pressure on the breast lymphatics. Sports bras tend to be better, but the main issue is finding a properly fitted bra; bra-fitting services should be used and are available at good quality shops around the world.
Deodorants, antiperspirants and cosmetics
Most should be avoided as much as possible, especially heavily perfumed products as they usually contain high levels of petrochemicals and other neurotoxins. There are safer products that are less toxic, but one has to shop around. Dr Perrin says: In the same vein, many of my patients relax by lighting scented candles at home. Unfortunately, aromatic candles are nearly all highly toxic with the wax usually having a high petrochemical content and the wicks usually containing heavy metals. If you enjoy candles to relax please try and use beeswax candles with natural, non-metallic wicks.
Mealtimes
Diets have been discussed at length, but the basic advice which Dr Perrin gives is not to eat anything in excess and generally ‘Variety is the spice of life’. Eating a large variety of food generally places less strain on a particular part of the gastrointestinal system, which is often disturbed in ME/CFS and FMS patients, with many having irritable bowel syndrome and gut dysbiosis.
Dietary intake of sugar should be low as it stimulates the production of yeast. Patients with ME/CFS and FMS should eat less casein (found in milk-based products), less gluten, as well as less yeast, as these are all composed of large molecules and therefore require the lymphatics to drain the excess away from the gut.
Small meals eaten regularly are best and Dr Perrin often advises patients to divide each meal into two, eating frequently but less at a time. Adults should drink around 2 litres a day of water and healthy drinks such as herbal non-caffeinated teas. Patients should reduce the intake of caffeinated coffee and tea as caffeine can over-stimulate the nervous system. Alcohol should be avoided at all costs as, besides it obviously placing extra strain on the liver, it has been shown that patients with ME/CFS and FMS have overactive receptors in the brain that are stimulated by NMDA, the neurochemical activated by alcohol intake. Dr Perrin says: Most of my patients do not find this advice difficult to follow as they feel worse after a little sip and almost drunk following the smallest amount of alcohol.
Chillax (chill and relax)
During the day and especially at night the patient has to learn how to relax and possibly meditate. A new word has been coined that embodies both relaxing and remaining chilled and calm: ‘Chillax’. There are plenty of different strategies to do this, including mindfulness.
Bedtime
Difficulty falling asleep and staying asleep, known as insomnia, and hypersomnia, when the patient sleeps too much, and other sleep disturbances are very common symptoms of ME/CFS and FMS. Leading sleep experts including Dr Jason Ellis, who is a Professor of Sleep Science and Director of the Northumbria Sleep Research Laboratory in the UK, advocate cognitive behavioural therapy for insomnia, often called CBT-I.
CBT-I is an approved method for treating insomnia aimed at changing sleep habits and includes regular, often weekly, visits to a clinician and completing a sleep diary to work out the best way of tackling the specific disorder. Sleep clinics around the world offer many ways of analysing the sleep problem and for those patients with severe sleep disorders a polysomnography test is essential. Also known as a sleep study test, polysomnography records your brain waves, the oxygen level in your blood, heart rate and breathing, as well as eye and leg movements.
It is best to have a set bedtime and stick to it as closely as possible.
Use blackout curtains and switch off all lights in the room.
It’s best to take all the electronic gadgets away from the bed.
Avoid tea, coffee and any other drinks with caffeine before bed.
Sometimes having a small meal an hour before bed helps. As one knows after a heavy meal during the day, one often feels very drowsy. This is because hormones released after eating can also stimulate the sleep centres. These hormones are controlled by the hypothalamus which is, as we have seen, the main part of the brain disturbed in ME/ CFS and FMS. Eating food can calm the hypothalamus and help induce sleep.
The best position for sleep is lying on one’s side, which places minimal strain on to the spine. It has also been shown that neuro-lymphatic drainage occurs more when lying on one’s side (no particular side, just the one you feel most comfortable on).
Some patients may develop sleep apnoea which is when one stops breathing during one’s sleep for short periods. This obviously can be dangerous...we need to breathe; so contact your GP if you think you have this problem. You may need an aid to support breathing at night called a continuous positive airway pressure machine (CPAP), which is the most effective treatment if you have moderate to severe sleep apnoea.
Sleeping pills and low-dose tricyclic antidepressants, such as 10 mg amitriptyline, are prescribed by GPs to be taken an hour before bed. Some patients taking amitriptyline report feeling very drowsy the next morning, so if you have a problem inform your GP.
The hormone melatonin is important for sleep so sometimes this is prescribed by physicians around the world to help ME/ CFS patients sleep but it is important to know that melatonin only helps patients fall asleep but does not control the amount and quality of the sleep.