This is the second in our short series on symptom management. Part 1 of this guide covered symptoms A to F and can be read, here. The complete guide has also be reflected in a newly updated leaflet available from our online shop.
The medical information contained in these blogs is not intended to be a substitute for medical advice or treatment from your own doctor. We recommend that you should always consult your doctor or dentist about any specific medical problem or approach to treatment. And we suggest that any medical information provided by the ME Association is, where appropriate, shown to and discussed with your own doctor or dentist at the next available opportunity.
ME/CFS can involve a wide variety of symptoms. When a new symptom develops, don’t assume that it’s ‘just another part of the illness’ – check with your doctor as there may be another explanation. The same advice applies when an existing symptom is obviously getting worse for no obvious reason.
The 2017 edition of ‘ME/CFS An Exploration of the Key Clinical Issues’ remains our preeminent guide to all aspects of this disease including symptom management, and we are happy to send a free copy to your nominated GP or consultant.
A further source of useful information on symptom relief can be found in the 2010 ME Association ‘Managing My M.E’ report which contains feedback from over 4,000 people on treatments that were found useful, and those that were not.
Headaches are a well recognised symptom in ME/CFS and are sometimes migrainous in nature. If so, ask your doctor if one of the drugs that are used to treat migraine attacks might be worth trying. If migraine type headaches are more severe or frequent, a trial of one of the drugs that help to prevent migraine attacks could be considered.
As with irritable bowel syndrome, some people find that certain foods trigger headaches. So exclusion of groups of foods is another possible approach that could be discussed with your doctor.
Two important points to remember:
Firstly, although headaches are a fairly common symptom in ME/CFS – they do have other causes. So do check with your doctor if they are becoming more frequent or severe
Second is that using over-the-counter painkillers too often can sometimes make the problem worse rather than better. So if you are taking a lot of painkillers, check with your doctor or pharmacist
- The MEA has an information leaflet covering all aspects of headaches in ME/CFS – including information about ‘red flag’ symptoms which mean that the situation must be re-assessed by a doctor.
These can include tinnitus (abnormal ringing or buzzing sounds in the ear) and hyperacusis (increased sensitivity to loud noise).
If tinnitus is becoming persistent or disabling, talk your doctor about some of the self-help devices that can help to mask out the noise. If tinnitus is becoming worse or intrusive, you can ask for a referral to the ENT clinic for further assessment and management.
- The British Tinnitus Association (phone: 0800 018 0527) has information on masking devices and other aids. For more information on hearing problems, see page 60 of Living with M.E. written by Dr Charles Shepherd, Hon. Medical Adviser to the ME Association
Irritable bowel type symptoms are fairly common in ME/CFS. These can include bloating, stomach pains and cramps, diarrhoea or constipation. Weight loss and rectal bleeding are not part of irritable bowel syndrome (IBS).
This condition should not be self-diagnosed and self-treated because there are a number of other conditions, such as coeliac disease and inflammatory bowel disease, that can cause fatigue and IBS type symptoms.
Management includes the use of various drugs that can help to relieve specific symptoms. Food intolerance appears to play a role in some cases of IBS – so dietary modification/exclusion can sometimes help as well – as can more specific diets such as the FODMAP diet.
You can ask your GP for a referral to an NHS dietitian for help with this aspect.
- The MEA has an information leaflet covering all aspects of stomach and irritable bowel symptoms, that also includes the NICE guideline on diet and IBS
Muscle spasms and restless legs
Muscle pain is sometimes accompanied by visible twitchings (= fasciculations), cramps and spasms. Some people with ME/CFS also have ‘restless legs syndrome’ – a fairly common complaint that may be associated with sleep disturbance, but can also be linked to iron deficiency anaemia.
Check with your doctor if you are having any of these problems because there are drugs, including muscle relaxants like baclofen/ Lioresal that can help to reduce unwanted muscle spasm if symptoms are becoming more disabling.
Muscle relaxant drugs obviously need to be used with great caution in a condition where muscle fatigue and weakness is already present.
Simple stretching exercises might help if you are being woken at night by cramp in the leg muscles. Quinine may also be helpful for muscle cramps.
Complementary practitioners may recommend magnesium supplements for restless legs but their value in ME/CFS is not yet proven.
- The MEA has an information leaflet explaining sleep disturbance and including a feature on restless legs syndrome
Nausea and Sickness
Some people with ME/CFS experience nausea – possibly because of a disturbance in a part of the brain that normally keeps any feelings of sickness under control.
Again, this is a symptom that you must not self-treat to start with. You need to check with your doctor because there could be another explanation besides ME/CFS.
Self-help measures and complementary approaches, such as using products containing ginger or using acupressure bands (which are placed over a special point on the wrist), are worth trying.
Doctors can prescribe various drugs to relieve more persistent nausea and it is interesting to note that one of these drugs – ondansetron/ Zofran – was reported to be of benefit in ME/CFS in one small trial, possibly through its action on brain chemical transmitter systems.
- The MEA website has more detailed guidance on the drug and non drug management of nausea and vomiting
Most people with ME/CFS have pain in varying degrees of severity – either continuously, or at some stage in their illness. However, some have no pain at all.
ME/CFS pain can affect muscles, joints, or nerves (= neuropathic pain) – where it may be described as burning, searing or stabbing.
When pain becomes more persistent or severe, over-the-counter pain-relievers such as aspirin, paracetamol and ibuprofen/Brufen tend to be of limited value.
Fortunately, doctors now have access to a wide range of drugs that can often be matched to different types and severities of pain.
They can also be given in a variety of ways – including skin patches which deliver a steady supply of painkiller over a prolonged period of time and creams which can be applied to a localised area of pain.
In the case of ME/CFS, approaches such as the use of a low dose of amitriptyline (a sedating antidepressant) or a drug such as gabapentin/Neurontin or pregabalin/Lyrica, which were developed as a treatment for epilepsy, can be particularly helpful in some cases. Another possible option is duloxetine (Cymbalta).
Complementary approaches, acupuncture in particular, are also worth considering. Another non-drug option here is the use of a TENS machine (for more localised pain).
If pain relief remains inadequate, you should ask your GP about being referred to a pain clinic at your local hospital.
- The MEA has information leaflets covering pain management in general as well as leaflets covering commonly used pain relieving drugs:
Postural hypotension, postural orthostatic tachycardia syndrome PoTS), orthostatic intolerance, feeling faint and hypoglycaemia
Postural hypotension is a term used by doctors to describe what happens when people experience symptoms of low blood pressure – in particular feeling faint – when changing position from lying or sitting to standing up.
PoTS refers to symptoms that are related to a sudden rise in pulse rate (tachycardia) when moving from lying to standing.
Orthostatic intolerance is the medical term for finding it difficult, or impossible, to remain in an upright/standing position for long periods.
All of these problems are quite common ME/CFS and are probably caused by a malfunction in a part of the nervous system that sends messages from the brain to control blood pressure and heart rate.
Feeling faint, or fainting, is something that should always be discussed with your doctor, who will probably want to carry out some investigations to make sure there are no other explanations.
You might also be referred to hospital for what is called a tilt table test – which measures changes in blood pressure and pulse rate during changes in posture.
Simple measures, such as making sure that you drink enough water and carry out some simple exercises before standing up, can often help.
There are also drug treatments which might be considered when PoTS symptoms are more severe.
Another cause of feeling faint is hypoglycaemia – a low level of blood sugar. If necessary, this can be checked for with blood tests.
- The MEA has an leaflets covering:
– Orthostatic intolerance and postural hypotension and,
– Postural Tachycardia Syndrome (PoTS)
The ME Association Guide to ME/CFS Symptom Management Part Three can be found, here.