Our quick survey for January is about cold hands and feet and it has attracted considerable interest so far. The survey deals with a common and sometimes very disabling symptom of ME/CFS – especially during the winter months.
The cause is probably related to what is called the autonomic nervous system (ANS) dysfunction in ME/CFS.
This is a part of the nervous system that helps to control the size of blood vessels, and blood flow, to key parts of the body such as the brain, as well as to the small blood vessels that supply the skin. So any disturbance in the ANS control centres in the brain, or in the messages that are then being sent in nerves that control blood flow, can make people over-sensitive to cold weather. This then causes the tiny blood vessels to shut down and produce cold hands or feet/toes. But sometimes the ears and nose are affected as well.
During a more severe attack the fingers become white, then blue. Finally, they turn red as blood flow is restored. There nay also may be pain, numbness or tingling/pins and needles sensations.
Attacks are often triggered by touching cold objects or exposure to cold of any kind. Stress or anxiety may also play a part, as can smoking. Symptoms can last from minutes to hours and fine movements become very difficult to perform during an episode.
Where the problem is more severe, and attacks occur as described above, it is called Raynaud's phenomenon.
The guidance given below incorporates advice from the Raynaud’s Association on managing cold hands and feet/toes, as well as providing some specific guidance relating to ME/CFS.
Various treatments are available for Raynaud's phenomenon. The choice will partly depend on the severity of the condition.
For milder symptoms, simple self-help measures such as hand warmers, thermal gloves and hats will help to alleviate symptoms. An even, ambient temperature is just as important as keeping warm because even a small change in the ambient environment can precipitate an attack. Cold draughty places should also be avoided where possible.
If the condition is more severe you should see your GP to properly assess the possible cause and management. This will include taking a detailed history to see if there are any symptoms or signs that suggest you may have another medical condition that is linked to Raynaud’s – autoimmune conditions such as lupus, rheumatoid arthritis, scleroderma and Sjögren’s syndrome in particular. Your doctor will also want to check some blood tests – ESR, full blood count, antinuclear antibodies etc – to see if there are any signs of an overactive immune system, as can also occur in ME/CFS.
A number of drugs can also cause or exacerbate Raynaud’s because they constrict blood vessels as a side-effect. These include anti-migraine drugs, beta blockers (for blood pressure and angina), decongestants, and the contraceptive pill.
For more severe symptoms, there are a number of prescription-only drugs available. These include vasodilator drugs like nifedipine that open up the small blood vessels. However, it may be necessary to try more than one drug before finding one that works. Natural products such as vitamins, fish oil, evening primrose oil, gingko biloba and ginger are used by some people but the evidence for their effectiveness is very limited.
Avoid touching cold surfaces and cold objects such as milk bottles
Wear insulated gloves when using the fridge or freezer. Don’t have ice-cold drinks straight from the fridge.
After a bath, leave the water in while you dress. The water will give off heat to keep you warm.
If you are out in the snow wear plastic disposable gloves over woollen ones – as getting wet makes the cold worse;
A hair dryer is useful for warming clothes and shoes before going out.
Cigarette smoking is harmful for everyone and smoking can reduce the temperature by one degree over a 20-minute period.
Use warm air hand dryers in public places to warm your hands when shopping.
Keep your clothes and shoes for the next day in the airing cupboard overnight or use a radiator to warm clothing before going outdoors.
Alcohol in moderation can help to open up the circulation but do not mix alcohol with medication.
Keep doors closed – leaving a door open can drastically reduce the temperature in your house.
Use shoulder bags for shopping where possible rather than ones with handles as these can cause restriction of blood to the fingers.
Do not try to rapidly warm up cold hands or feet by placing them directly on a hot radiator or in hot water.
Taking care of hands and feet:
The Raynaud’s Association website has detailed and very helpful information on shoes, nail care, skin care, ulcers, chilblains and callus (hard skin) formation
Taking care of dry skin:
Raynaud's can also cause dry and cracked skin. Ulcers may then develop, especially on the fingers and toes. Dryness and irritation of the skin on the rest of the body can also occur.
Normal skin contains a high percentage of moisture (water), which is prevented from evaporation and drying out by a film of oil over the surface of the skin. Dry skin usually results from a failure to produce adequate levels of oil. This can be exaggerated by frequent washing which removes the oil. Care should therefore be taken when using detergents and soap as they have a degreasing effect on the skin.
Replenishing protective oils can be achieved by adding an emollient to the bath or applying it directly to the skin either when the skin is wet or dry. Bath emollients are emulsions of oil in water, which can be added to the bath. Care should be taken when getting out of the bath as emollient can make the bath slippery. Use a non-scratch bath cleanser to remove the oil film.
During the day, creams or ointments will replenish natural oil and help keep the skin more supple, preventing drying out and cracking. Creams are cosmetically more acceptable but their moisturising effect tends to be short lived. Simple petroleum jelly is effective and can be thinned down by mixing it in a tub placed in a basin of hot water and mixing in an equal amount of liquid paraffin.
There are two ways of accomplishing rehydration. The first is to take a bath containing an emollient bath oil and sit in it for twenty minutes. The second is to use moisturising creams. Creams which contain lactic acid, urea or lanolin are most effective. A small number of people are sensitive to lanolin but this is quite rare.
Products recommended by The Raynaud's Association:
Members of the Raynaud's Association have tried and tested a variety of heating aids and warm clothing that have proved to be helpful in keeping warm. It really is a matter of finding which is most suitable for your particular circumstances. You can visit their online shop and browse through their products.
The following companies also offer heated or warm items of clothing:
Celtic Sheepskin – Warm sheepskin clothing and footwear
Cosyfeet – Shoes and slippers giving ‘ultra roomy fitting', also available is The RevitEX02 – Suppliers of heated garments
Footessentials – Provide a range of natural alternative products, which have many therapeutic, anti-bacterial and naturally effective properties to optimise health and wellbeing
Bewell Ltd – battery-operated gloves and socks