Managing fatigue, sleeping problems and brain fog
Jenny Morrison, Neurogenetics Research Nurse, University College London Hospital
Please note: The following text cannot and should not replace advice from the patient's healthcare professional(s). Any person who experiences symptoms or feels that something may be wrong should seek individual, professional help for evaluation and/or treatment. This information is for guidance only and is not intended to provide individual medical advice.
This information is based on the experience and expertise of the author.
In common with people who have other long-term conditions, many people with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) experience chronic fatigue. The reasons for this are far from clear. While there is no easy fix for chronic fatigue there are various coping mechanisms which can help. These are similar to coping mechanisms for ME/chronic fatigue syndrome, although chronic fatigue with hEDS/HSD and chronic illness is distinct from ME/chronic fatigue syndrome.
Staying hydrated is vitally important when trying to fight fatigue as it helps to ensure a good flow of blood to your brain. This is especially important if you have a sister condition such as postural tachycardia syndrome (PoTS) or orthostatic intolerance, as these conditions may also reduce the blood flow to your brain. As well as water, electrolyte-rich drinks such as coconut water or sugar-free sports drinks can help you to stay hydrated. Urine should be pale yellow.
Have a healthy diet
Many deficiencies can lead to fatigue, such as anaemia (iron/haemoglobin deficiency), vitamin B12 deficiency and vitamin D deficiency. Low vitamin D can be more of a problem during winter, as you have less exposure to sunlight which helps your body to produce vitamin D. Having a healthy and balanced diet can improve energy levels and prevent deficiencies. Taking a multi-vitamin may also help. If you have gastrointestinal issues causing malabsorption or you take medication which inhibits the absorption of nutrients (e.g. proton pump inhibitors, gabapentin, pregalabin) you could request that your GP tests your nutrient levels. If you have a severe deficiency your doctor may prescribe a higher-dose vitamin. Some people find that the supplements carnitine, co-enzyme Q10 and 5-HTP also help them in fighting fatigue, although the evidence is anecdotal. You should always discuss taking supplements with your doctor, especially if you are on other medication.
Avoid caffeine and sugar
Whilst caffeine and sugar might make you feel less tired in the short term, they can make fatigue worse in the long run. Reducing or stopping your sugar and caffeine intake can reduce energy fluctuations and make you feel more stable and less fatigued.
Although you probably won’t feel like it, exercise can really help when you’re suffering from fatigue as it triggers your body to produce adrenaline and other hormones that can make you feel more energised. Starting gently and slowly, gradually build up the amount of exercise you can do because it is important to avoid overexertion at first. Swimming, walking and specialist physiotherapy are all good forms of exercise for someone with hEDS/HSD.
Make sure you don’t do too much and get enough rest between activities, otherwise you might pay for it the next day. A good explanation of ‘pacing’ is the spoon theory which can be found here:
Good sleep hygiene
Many people with hEDS/HSD find that they have a hard time getting a good night’s sleep. There are several things you can try yourself to improve things. Good sleep hygiene is really important. This means getting into a good night-time routine. Go to bed at the same time every night (shift work can cause further problems), and don’t use a computer or phone for several hours before bed (the bright light from screens inhibits the release of a hormone called melatonin which helps you sleep; the light from a TV shouldn’t affect it so much as you are sitting further away but it may help to cut out TV for several hours before bed as well). Keeping your phone/computer away from the bed can also help you to avoid the distraction (“log off before you nod off”) and make sure there are no other distractions in the room. Having a warm bath or a warm (non-caffeinated) drink, reading or doing something to relax in the few hours before bed can really help as well. It is also a good idea to cut out caffeine for at least 4-6 hours before sleep, as well as any other stimulants.
Pain is one of the factors that can cause sleep problems (‘painsomnia’). Ensuring that pain is kept under control is important. Using heat pads on sore joints at bed time can help. If you believe pain is one of the main things preventing you from getting a good night’s sleep, it might be worth talking to your doctor about pain management. It may be possible to get a prolonged release pain medication that works throughout the whole night. Sleeping tablets may also be prescribed, but these are generally not a good long-term solution as the body can become resistant to their effects. Getting too much sleep can also worsen fatigue. Try to sleep for the same amount of time each night as this can lessen tiredness and help you to get into a good routine. Most need around eight hours sleep but people with hEDS/HSD or chronic fatigue may find that they need more than this.
If you find that none of these things help with sleeping, it may be worth getting a referral to a sleep clinic where they will be able to assess you and attempt to find the cause of your sleep problems. There are several other conditions which influence sleep and which may be more common in hEDS/HSD. These may include sleep apnoea and restless legs syndrome.
Certain types of therapy may be effective in treating chronic fatigue, especially Cognitive Behavioural Therapy (CBT). This does not mean that the fatigue is all in your head, but CBT can help you to come to terms with the problem. It can also be helpful in learning to live with hEDS/HSD and chronic pain, and many pain management clinics will offer CBT as part of your treatment.
Many people with hEDS/HSD also suffer with brain fog. They may find themselves feeling confused, being unable to process information, or forgetting things for no apparent reason. Whilst the reason that hEDS/HSD causes this is not confirmed, it is thought to have similar causes as fatigue. Managing fatigue should therefore also help with episodes of brain fog.
In hEDS/HSD, it is thought that brain fog may be related to lack of blood flow to the brain due to blood pooling in the legs because of stretchy veins. There is further research needed to confirm this suspicion. Brain fog also appears to be more common in those with PoTS secondary to their hEDS/HSD, suggesting that there may be a link there.
There are several other things that may cause or worsen brain fog, and making some small changes in your life may help to improve things.
Hormones can influence fatigue and brain fog. Many women find that brain fog worsens at certain times during the menstrual cycle and/or during pregnancy. Some women also find that symptoms worsen when they are on certain birth control or hormonal treatments.
Vitamin and mineral deficiencies can cause or worsen fatigue and brain fog. Making sure you eat a healthy balanced diet is important and, if your symptoms are severe, your doctor may wish to arrange a blood test to find out if you have any specific deficiencies. These include anaemia (iron deficiency), B vitamins and vitamin D deficiencies, and potassium deficiency. Taking supplements if you have a deficiency can help with the symptoms, although it is important to check with your doctor before you take any medications or supplements, especially if you are taking prescribed medication.
Some medication can cause fatigue and brain fog. These include some antihistamines, cough medications, painkillers and antidepressants. If you are worried that these may be causing you problems you should discuss the situation with your doctor. It may be possible for your doctor to change the medication to one which does not cause those side effects.
Other conditions can also contribute to fatigue and brain fog. These include diabetes, heart disease, hypothyroidism, alcohol and/or substance abuse, emphysema, and obesity. Managing these conditions effectively can help with symptoms.
Peer reviewed by: Angela Hunter, SLT (retired) and trustee, EDS UK
Date of last review: 01/10/2017