Whilst pain is not conventionally directly linked with ataxia, it is still a real problem for many people. If not managed effectively, chronic pain may become as debilitating as ataxic symptoms.
Because nerves are responsible for “carrying” pain signals, it is often assumed that any painassociated with a neurological condition is neurological in origin. This is not always the case; inataxia pain is largely a secondary effect and generally musculo-skeletal in origin. Co-ordinationproblems lead to muscles becoming weak through lack of use, which can lead to a personadopting unusual ways of walking or standing. This puts unnatural pressure and strain on jointsthat in turn lead to pain. Long periods of time in a wheelchair also lead to muscle weakness,stiffness in joints and pains down the legs.
People who experience pain with their ataxia usually describe a constant, chronic pain that is
with them night and day. One Friend of Ataxia UK describes it like having “a nagging toothache,
constantly throbbing all the time with occasional flare-ups, which are horrendous”. Two body
regions seem particularly affected. Firstly, many people suffer pain at the base of the spine, in
the hips, legs, knees and feet. These pains are usually described as cramping or gripping
muscular-type pains. Secondly, people may experience pain across the base of the neck, along
the shoulders and down one or both arms; many people have the classic symptoms of frozen
(onset of pain with no obvious causal factor, often worse at night, followed by a
progressive limitation in the range of movement at the joint).
Another Friend, diagnosed with cerebellar ataxia 12 years ago, described to us pain at the base of her spine, spreading through her left hip and along her neck, and at the base of her skull like
a “tight stretched band”. Generally, people agree that their problems have been caused by
adopting an unusual posture or walk, with one side often worse than the other, and that the
pains have gradually worsened.
Many people with ataxia are prescribed ‘simple’ painkillers such as paracetamol or diclofenac.
Less commonly people may receive painkillers containing a mix of paracetamol with codeine
(co-codamol, Tylex®). To control muscle cramps, patients may be prescribed the muscle
relaxants baclofen or tizanidine. Other options for reducing pain caused by muscle spasms
include anticonvulsants such as gabapentin or clonazepam, or the antidepressant
amitriptyline which also has pain relieving qualities. Both these type of drugs also have
sedative effects and may be given at night to help sleep.
People who have chronic pain may worry about taking medication long-term and there are somealternative approaches to pain control available.
One alternative is Transcutaneous Electrical Nerve Stimulation or TENS, which has been
used for many years as a drug-free type of pain control. TENS machines are small, portable
units, which via small pads placed against the skin apply a low-level electrical current to the
body, felt by the user as a gentle tingling sensation. This current blocks the pain signals from
nerves, by closing ‘the gate to pain’ before the signals reach the brain. The technique has been
compared to ‘electronically rubbing yourself better’. Low-level currents are also thought to help
stimulate the body to make its own pain-relieving substances called endorphins.
Ataxia UK, Lincoln House, Kennington Park, 1-3 Brixton Road, London SW9 6DE
Tel: 020 7582 1444
Helpline: 0845 644 0606
Ataxia UK works across the whole of the UK and is a charity registered in Scotland (no SC040607) and in England and Wales (no 1102391) and a company limited by guarantee (4974832).
Because there are many types of pain and every individual is different, TENS machines maywork in slightly different ways for different people. Some people find that the device can relievepain only whilst it is being used, whilst others will get hours of relief from a single session. Al-though they have been highly successful, TENS machines do not work for everybody and areexpensive so you should ask to borrow one from your GP or pain clinic to see how successful itis for you before buying one. It is essential to get proper instruction before using a TENS ma-chine to be sure that you are using it correctly.
Increasingly, healthcare professionals are recognising that managing pain is not always as
simple as identifying an underlying cause and giving painkillers, but that there are many factors
influencing the pain experienced by an individual. Multidisciplinary pain clinics bring together
a team of specialist doctors and nurses and other practitioners who can advise on ways to cope
with pain. There will also be therapists on hand who can help address the emotional and
psychological factors that have an important influence on pain. Anxiety and fear can heighten
pain so seeing a specialist who understands and can explain the cause of pain often helps
reduce the intensity of the pain.
Physiotherapists can be involved in managing pain, and can teach exercise regimes which
may strengthen core muscles and improve posture in addition to easing pain. Occupational
may also be helpful to assess positioning or personal aids which may be contributing
to pain and suggest improvements.
If you are suffering from chronic pain you may ask your doctor or neurologist about a referral to a
pain clinic or local pain management team.
Many people with ataxia have told us that adopting a positive attitude helps them to cope. By
looking for ways in which they can help themselves and experimenting with different approaches,
people have come across techniques that work for them. One lady who was diagnosed with
Friedreich’s ataxia in the 1950s has found that deep-breathing exercises and yoga have
helped her reduce stress and control her pain. Other Friends have told us about different
methods they have tried; including shiatsu therapy which has helped control one lady’s chronic
pain in her lower spine and shoulder, and self-hypnosis which can be learned to help
individuals self-manage their pain.
Similarly, we have heard how self-discipline and a positive approach have helped one Friend
to cope with pain. He wears bright and cheerful clothes and tries to get out as much as possible
and talk to people. He also suggests massage and relaxing footbaths can help. Many people
have agreed that soaking in a warm bath helps to soothe cramps and aching muscles and can
be a great way to relax at night and encourage sleep.
The information in this leaflet was checked by Dr Simon Hammans (Consultant
Neurologist, St Richard’s Hospital, Chichester and Wessex Neurological Centre,

This leaflet is for guidance purposes only and, while every care is taken to ensure its accuracy, no guarantee of accuracy can be given. Individual professional advice should be sought before taking or refraining from taking anyaction based on the information contained in this leaflet and nothing should be construed as professional advicegiven by Ataxia UK or any of its officers, trustees or employees. No person shall have any claim of any naturewhatsoever arising out of or in connection with the contents of this leaflet against Ataxia UK or any of its officers,


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