For many years Multiple Sclerosis was considered, medically, to be a painless disease, probably because the process of demyelination was thought in itself not to be painful. However, people with MS themselves have known for many years that specific symptoms could cause considerable pain, and this is now being recognized.
Chronic pain is experienced by about 50% of people with Multiple Sclerosis. Although pain is more common amongst people with severe MS, and amongst older people with the disease, almost everyone will experience some kind of pain at some point.

Trigeminal neuralgia

Trigeminal neuralgia is a very acute knife-like pain, usually in one cheek, and sometimes over one eye, but it rarely affects both sides of the face. It is caused by the lesions of Multiple Sclerosis damaging trigeminal nerve pathways. Drug treatment usually includes carbamazepine (Tegretol), although this drug does produce side ef fects, which may be a problem. The primary side effect is sleepiness, so the drug may be started in low doses and then given in higher doses until the pain is controlled. It is also possible that phenytoin, which has a milder action than that of carbamazepine, may be used, or less commonly, baclofen, which is usually given for spasticity. Another approach is to try and block the inflammation; if this is associated with a relapse, steroid therapy is given. If there is a continual problem of trigeminal neuralgia linked to several relapses, then a prostaglandin analogue called misoprostal (Cytotec) can bring relief. In some cases, various surgical operations, including the
‘gamma knife’, can destroy the relevant nerve pathways. Even if the trigeminal neuralgia reappears, as it can do, then the treatment can be started again, and it will almost certainly reduce the pain.

Jaw pain

There are other types of pain that may affect the facial area, which may not be linked to particular forms of myelin damage: temporomandibular joint (TMJ) pain affects the jaw area, or you may get more general migraine or tension headaches. Drug therapy can help counteract this pain, but in each case will be dependent on a careful investigation of the cause of the pain, and particularly the extent to which it appears to be linked to the Multiple Sclerosis, or to something else.

Pain from unusual posture and walking patterns

Pain from poor posture when sitting or lying, and from unusual walking patterns, is quite common. In most cases the pain does not result from the neurological damage of MS, but from its effects on movement.
In fact one of the most common kinds of pain treated by neurologists in relation to Multiple Sclerosis is low back pain, often arising from an abnormal sitting posture or from a way of walking that has developed as a result of damage to the control of leg muscles. This may result in a pinched nerve from ‘slipped discs’, or other back problems, which can also be caused by unusual turning or bending motions. Painful muscle spasms may also result.
So it is important to pay careful attention to how you sit and how you move in order to lessen such difficulties. You may need to seek advice from a physiotherapist in relation to both posture and movement. Comfort may be obtained by:

• massage of the back, if carefully undertaken
• ultrasound
• TENS
• specific exercises, to relieve muscle spasms
• drugs designed to reduce spasms, and finally
• surgery, if there are disc problems.

Other painful conditions, particularly painful swelling of the knee(s) or ankle(s), can result through problematic patterns of walking. You must seek careful advice in relation to these conditions. It is possible that orthopaedic doctors, recommending conventional orthopaedic exercises for such conditions, may not fully realiz e that having Multiple Sclerosis could mean that such exercises fail to work. It is likely that the swelling/pain of one joint may be easier to remedy through what is called an ‘assistive device’ (e.g. a crutch) to take the weight off a weaker leg, or a knee brace.

Spasticity and pain

Muscular cramps and spasms are known as ‘spasticity’. Several muscles contract simultaneously, both those assisting movement and those normally countering it. These muscles will feel very tense and inflexible – this is because what is medically called their ‘tone’ increases, and movement becomes more difficult, less smooth and possibly rather ‘jerky’.
Spasticity is quite a common symptom in MS and is often very painful: it can occur in the calf, thigh or buttock area, as well as the arms and, occasionally, the lower back. Spasticity can lead to ‘contractures’, where the muscle shortens, making disability worse.
There are a number of ways of managing spasticity in Multiple Sclerosis:

• Use your muscles as much as possible in everyday activities, and undertake regular stretching exercises to help reduce muscle shortening.
• Specific exercise recommended by a physiotherapist, such as swimming, or undertaking stretching exercises in a pool-based environment, should be done on a regular basis – an important point, as spasticity is likely to be a continuing issue.

Devices to assist in the management of spasticity
There are specific devices that may be useful for people with Multiple Sclerosis when spasticity occurs regularly in key muscle groups, and exercises alone do not appear to deal with the problem. There are devices to spread the fingers or toes. What are called ‘orthoses’ – in effect braces – keep the hand, wrist or foot in an appropriate position or prevent ranges of movement that may result from, or cause, spasticity. A particularly useful brace may be one that places the ankle in a good position in relation to the foot and thus lessens the possibility of local muscle contractures, as well as lessening the stress on the knee. It is important that all orthoses are specifically suitable for the individual concerned, as of course body shapes and sizes vary considerably.

Drugs
There are several drugs available to help muscles relax, and ensure that as few of your activities as possible are affected. It is difficult to target spasticity specifically, so some people may need medication occasionally, in the day or at night, and others may require more continuous medication. It is difficult to get the balance and the dose right, and this often has to be done on a trial and error basis.
One of the most common and effective drugs for spasticity is baclofen (Lioresal), but it can have side effects; some people find it hard to tolerate high doses. Effective doses may vary widely for different individuals. Normally this drug is taken by mouth, but other ways of administration are being developed to help people with more severe symptoms.
Other muscle relaxants, such as the widely used diazepam (Valium) can also be used, but they may have general sedative effects, causing drowsiness; this is why diazepam might be particularly helpful at night. People are also worried about whether they might become dependent on these drugs in the longer term.
There are some newer drugs in the process of being introduced, which on their own, or in combination with the more established drugs, may target the spasticity more specifically:

• Dantrolene (Dantrium) tends to reveal and possibly exacerbate any muscle weakness that may be present, and its effects should be carefully monitored.
• Tizanidine (Zanaflex) is a relatively new drug, and may work in some cases when baclofen and other drugs do not; it can also be used in conjunction with baclofen. It produces more sedation than baclofen but less weakness.
Some other drugs work best for specific muscle groups in the body – such as cyclobenzaprine HCl, which is useful for the back muscles, although it may work for other muscle groups as well. It can also be used in relation to another drug for spasticity.
In relation to chronic spasms, which may result in a complete arm or leg being extended or stiff, carbamazepine may be used, although baclofen can be very helpful. Cortisone can sometimes be used to assist short-term control of such spasms – although it is not for long-term use because it has a range of side effects.
It is possible that any or all of the drugs above may become less effective over time and thus one of the possibilities is to stop taking the drug concerned for a period of time before starting it again.
There are other drugs undergoing trials at present in relation to the control of spasticity. One of the most promising is cannabis (or, in practice, combinations of cannabinoids – the chemical constituents of cannabis).
There may be occasions, especially later in the course of Multiple Sclerosis, when treatment needs to be more robust to reduce very severe spasticity. This might take the form of injections, directly into the nerve or muscle concerned, with phenol or alcohol or, more recently, botulinum toxin, which damages the nerve and produces what some call a ‘nerve block’ preventing the spasticity from occurring.

Spasticity and surgery
Surgical intervention may be tried in relation to spasticity if other means of control fail. This can take several forms. Nerves controlling the specific muscles of the leg may be deactivated using what is called a ‘phenol motor point block’. This may make the legs more comfortable but clearly does not assist mobility. Other techniques may help spasms in the face – indeed botulinum toxin (Botox), which is increasingly being used for cosmetic purposes, may help small but very irritating facial spasms. Sometimes nerves or tendons controlling specific muscles that are producing major problems might be cut if there are no other easy means of control.
A relatively recent development is the use of baclofen pumps to deliver the drug directly into the spinal canal to control spasticity. This process is still expensive and is what doctors would call an ‘aggressive’ treatment for spasticity, although it does allow a much finer and more detailed management of the flow of the drug.

Pain from other Multiple Sclerosis symptoms

Apart from the types of pain that we have already discussed, there are other sorts that can be associated with MS symptoms, such as that from:

• urinary retention or infection;
• pressure sores (later on in the disease), if not treated as early as they should be;
• eye conditions, especially ‘optic neuritis’, when the optic nerve swells.

In general, if the source of the problem is treated, the pain will disappear, although the management of the neurological causes of pain is more difficult than management of pain from other sources.