How to keep warm this Winter when you have ME/CFS, Long Covid or Fibromyalgia: tips and advice

Many people with ME/CFS, Long Covid or Fibromyalgia struggle to regulate body temperature, and this can be a particular problematic when the weather gets cold. You may notice that you feel unusually cold at this time of year, taking a long time to warm up, or fluctuating between being chilled and overheated. Feeling cold is not just uncomfortable, but it can also make other symptoms worse. There are a number of biological reasons why temperature control is often an issue when you have one of these conditions. Here we describe how temperature regulation is affected when you have ME/CFS, Long Covid or Fibromyalgia, and offer some practical ideas about how to stay warm and cosy when the temperature falls this Winter.

Why is temperature regulation more difficult when you have ME/CFS, Long Covid or Fibromyalgia?

Temperature dysregulation is a common symptom in ME/CFS and 75-80% of people with this condition suffer from intolerance to heat or cold. This is a recognised neuroendocrine symptom and detailed in the Canadian diagnostic criteria for ME/CFS. Many people with Long Covid also find it difficult to regulate body temperature and can suffer with both heat intolerance and cold sensitivity. Temperature regulation is also disrupted in Fibromyalgia causing people to feel excessively hot or cold as their nervous systems struggle to maintain a stable temperature.

Sadly, not only can poor temperature control cause discomfort, it may also worsen other symptoms. One study of over 2000 people with ME/CFS  found that nearly 60% experienced a worsening of symptom when exposed to extreme temperatures.

There are a number of reasons why temperature regulation may be affected in these conditions:

1. The Autonomic Nervous System (ANS) is affected in these conditions – the ANS controls automatic body functions, including blood-vessel dilation, sweating, and temperature balance. Reduced heart-rate variability and abnormal vasoconstriction can also occur in ME/CFS and Long COVID — meaning blood doesn’t circulate to the skin and extremities as well.

   
   

2. Low Blood Volume and Circulatory Changes - many patients experience low plasma volume or mild orthostatic intolerance, which reduces warm blood flow to the hands and feet. Also, when the body is already energy-depleted, generating heat takes extra effort.

   
   

3. Mitochondrial and metabolic inefficiency - impaired cellular energy production limits the body’s ability to produce heat through metabolism (“thermogenesis”), which contributes to feeling cold even in mild temperatures.

   
   

4. Low cortisol and hormonal factors - dysregulation of the HPA axis can blunt cortisol and thyroid responses that normally help maintain body temperature.

How to keep warm this Winter when you have poor temperature regulation

Whether you have ME/CFS, Long covid or Fibromyalgia it is probably best to adopt small consistent warmth-preserving measures rather than suddenly immersing yourself in great heat in order to keep warm.  There are a number of approaches that are likely to keep you feeling more comfortably warm all the time, without fluctuating between extremes of being very hot or very cold.

1.   Choosing the right clothing

The Layering Principle 

Layering is a really good way to dress for warmth and to avoid switching from being too cold to being overly warm. Use several thin, breathable layers of clothing rather than one heavy jumper — this makes it easier to adjust to changes in temperature during the day. Layers are also very good at trapping warm air, keeping you at a more constant temperature. Air trapped between layers of clothing insulates better than one thick garment.

• Base layer - use merino wool, silk, or synthetic thermal fabrics to keep skin dry. Avoid cotton, which holds sweat and cools you down.

• Middle layer (insulating) - fleece, down, or wool sweaters to trap heat. For indoors, a lightweight down or synthetic vest is great—it keeps your core warm without restricting arm movement.

• Outer layer - a windproof and waterproof shell to block the elements, which strip heat away when you’re outdoors. For indoors - use a thick dressing gown or a soft, wind-blocking cardigan which can serve as this layer if draughts are an issue indoors.

Thermal base layers  - consider investing in thermal leggings and a thermal top as a way of adding a warm base layer below your clothes. Whilst thermals are often made in synthetic fabrics, you can also buy them in merino wool or bamboo fibre, and also in silk, which is lovely and soft, but rather expensive. Merino wool can be a good choice as unlike other wool it’s soft and doesn’t cause itchiness. It’s also very warm and comfortable.

Focusing  on extremities and core

• Try and keep your torso, neck, and head warm — this reduces heat loss from the body’s core and helps hands and feet stay warmer. Heated waistcoats, microwaveable heat pads, or an electric throw blanket can help while resting.

  
  

• Head and neck - up to 30% of body heat can be lost through an uncovered head. Wear a warm hat and a scarf/neck gaiter

  
  

• Hands and feet - insulated gloves and thick socks (merino wool again are good). Consider heated gloves and socks for when it’s really cold and do all you can to keep your feet dry

  
  

• Core - keeping your torso warm ensures warm blood flows to your extremities. Consider getting a heated vest for constant core warmth. You can also buy knitted lumber warmers  to keep your lower back warm, as shown in the photograph below

  
  

• Wear fingerless gloves, thermal socks, and a hat indoors if needed — conserving body heat uses less metabolic energy.

Knitted lumbar warmer  - an example of a lumbar warmer used for warming your back

2.   Keep warm this Winter by keeping your home warm

As well as thinking about your clothing, there are steps you can take to keep your home snug, so that you can cope with the cold weather better.

Zone heating - work out which rooms of the house you’re going to spend your time  in and use individual heaters in the room you occupy, rather than trying to  heat the whole house. Keep rooms around 19–21 °C if possible. Smaller rooms with fewer windows are generally easiest to warm. Use rugs on cold floors and always wear shoes or slippers on your feet.

Portable heaters can provide targeted warmth without overheating the entire space. Which magazine Best Buy heater recently was the Bush 2kW Digi Oscillating Tower Fan Heater (4844808), available from Argos for £55, as shown below.

Draught proofing – make sure that there are no draughts coming in through the edges of doors/windows which can lower the temperature and make a room less comfortable.  

Draughts coming in through windows can be sealed with adhesive draught excluder tape or strip. This is also useful for reducing noise from outside the house. Using a simple draft excluder at the bottom of a door can also make a big difference at reducing draughts coming in under doors.

Thick lined curtains can also keep a room much warmer, especially hung in front of a door

3.   Warming up when you get cold

Sometimes you can suddenly realise you’re feeling very cold , and the cold has crept up on you. It’s important to have some remedies to hand to warm you up quickly to restore your core temperature when this happens.

Warm (not hot) baths and showers or foot soaks –  a warm bath, shower or foot soak will raise your core temperature helping you to feel comfortable again if you do get cold. Add Epsom salts (magnesium sulphate) for muscle relaxation.

Make a hot water bottle and wrap yourself in a blanket, or slip into bed – this provides a quick remedy when you suddenly feel very cold.

Electric hand warmers can be really helpful for those who suffer with cold. hands, especially if you need to leave the house. These rechargable lightweight hand warmers by Ocoopa are popular on Amazon at the moment

4.   How to keep warm this Winter with warming foods and drinks

Keep warm this Winter by eating plenty of warming foods and drinking warm drinks.

Eating regular small meals containing protein and complex carbohydrates help maintain body heat and helps you to manage blood sugar. Your body generates heat through digestion. Digesting protein rich foods, in particular, causes thermogenesis in the body as you generate heat through the act of digestion.  Include healthy fats and complex carbs in your meals for longer-lasting fuel.

Sip on warm water, herbal teas, soup or broths throughout the day .The act of holding a warm mug also helps hands to stay warm. Avoid caffeine (in excess) as it can cause vasoconstriction, reducing blood flow to extremities.

Try making this nourishing  Chicken Soup recipe from BBC Food

5.   Active warming and boosting your circulation

Poor thermoregulation often involves poor circulation, so stimulating your circulation through regular movement can be helpful. This doesn’t have to be strenuous movement, but if feel you have the energy try and get up and walk around, or do some gentle stretching, on a regular basis. as this will help your circulation and keep you feeling warmer. Set a timer to get up and walk around for a few minutes every hour. This will get warm blood flowing to your extremities.

6.   Keeping warm this Winter in bed

Warm the bed beforehand

Flannelette sheets -  brushed cotton creates a soft, napped surface that traps air - so feel cozy and warm the moment you get into bed. Both flannel or fleece bedding retain heat better than plain cotton sheets so are a good choice.

Layering bedding - consider adding an extra layer, such as a flat sheet or a lightweight thermal blanket below your duvet as this helps to trap air which keeps you warm. Then use a medium weight duvet rather than a very heavy one, which can become heavy and uncomfortable.

Consider using a low-wattage electric blanket to warm your sheets before you get into bed, making it much warmer and more comfortable, especially during cold weather. It’s best to switch off an electric blanket before going to sleep for safety reasons. Alternatively hot water bottles can be really helpful for warming the bed before you get in.

Wear bed-socks to keep your toes warm and keep a dressing gown and slippers close to the bed to use if you need to get up during the night or for the morning.

Whilst it may be tempting to put the heating up in the bedroom, in general people sleep better in cooler bedrooms. So warm the bed, not the bedroom!

Other causes of poor temperature regulation

Don’t forget there are other reasons you may be finding it difficult to regulate temperature, so give some thought as to whether these may be relevant to you.

Hypothyroidism – an underactive thyroid can cause you to feel cold more often. Apart from being sensitive to cold, other symptoms include putting on weight, having constipation and dry skin and hair.

Reynaud’s Syndrome – this is a condition in which blood vessels in the fingers and toes narrow in response to cold or stress, cutting off blood flow and causing the skin to turn white, then blue and leading to numbness, coldness and tingling.

If you think you may have other medical reasons, such as the ones described above, that may be affecting your temperature control, please consult your GP

Photo showing impact of Reynaud’s syndrome.

This Photo by Unknown Author is licensed under CC BY-SA

Finally

Regulating your body temperature can be difficult when you have ME/CFS, Long Covid or Fibromyalgia due to some of the physical differences including autonomic system, circulatory, metabolic and hormonal issues that arise in these conditions. So its important to be kind to yourself, to take lots of care, and to take steps, and to ask others to help you to take steps, to keep you warm and cosy during the cold weather.