Tag: Pain

  • Sensations and pain: Pain

    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.

  • Sensations and pain: Balance

    Socially and physically loss of balance is a difficult issue to manage. Unfortunately, there is no easy solution, as the loss of balance is basically a problem caused by damage to part of the brain – the
    ‘cerebellum’ (or its pathways in the brain stem). Other factors can compound the problem, such as spasticity or weakness in the legs. After a while you will probably adjust to some of your problems and, although you may wish to keep going for as long as possible, the most obvious way of helping yourself is by using walking aids (perhaps a stick or crutches); at least these will help you avoid some painful falls and also signal to others that you are not drunk, but that you have some physical problems with movement.

    Dizziness

    Dizziness (if due to true ‘vertigo’) is when you feel that things around you are moving, or feel that you are moving, sometimes quite rapidly, when in reality neither is happening. This can sometimes be alarming, especially if you feel that you are falling. Sometimes other sensations, like feeling sick (‘nausea’), are associated with vertigo. Dizziness from loss of balance is also related to damage to the cerebellum (or brain stem), the nerve connections to it from the middle ear, or within what is called the ‘vestibular system of the inner ear’. In almost all cases in MS, the dizziness goes away of its own accord after a few hours or days.
    Dizziness can be helped by some drugs:

    • Steroids (particularly intravenous methylprednisolone) can help when the dizziness is both acute and persistent.
    • Diazepam (Valium) is given to dampen down the reflexes of the vestibular system.
    • Antihistamines can provide some help if the symptoms of vertigo or dizziness are mild.
    • Stemetil (prochlorperazine) may be prescribed.

    There is one other apparently strange method that people use: when the vertigo feels worse on moving, exaggerating those movements can sometimes help. Deliberately falling on to a bed (or other very soft surface) on your left and right side, and backwards, three times each way, may ‘rebalance’ the vestibular system, at least temporarily. You may also find that there is a particular position that lessens the vertigo, such as lying on one side rather than another. There is also some evidence that tolerance can develop (e.g. dizziness can be lessened) if you can, with professional help, maintain the position of your head, when the dizziness is at its worst, for as long as possible. Of course, this approach can be rather uncomfortable until tolerance increases.

  • Sensations and pain: Sensations

    Initially strange and sometimes uncomfortable sensations of many kinds are typical effects of Multiple Sclerosis. A person can feel these symptoms but the doctor may to be able to find clear physical evidence of why particular symptoms are caused. They are related to damage to the nervous system. They may take various forms, and are frequently intermittent. Doctors often regard these symptoms as relatively benign because, although they may be irritating, they do not, on the whole, tend to result in major problems in daily functioning. Many people with MS get to know the situations in which these sensations occur and adjust their everyday lives as much as possible to avoid those situations. Some may be uncomfortable but can be tolerated. Others may be helped by remedies that you can use yourself. Yet others may require medical advice, support and treatment.
    It is often felt by doctors that, although it is now recognized that pain is more frequent and often more severe than previously thought, it does not generally lead to decreased mobility, and is not associated with a poor prognosis. This may of fer some comfort to those who have pain from their MS.

    ‘Burning’

    A burning pain can occur in your arms, legs and in other parts of your body. Medically, this is often called ‘dysaesthesia’ and results from abnormalities in the sensory pathways in the nervous system. After exercise, or at night, this burning pain may get worse. Unfortunately, ordinary pain medications do not usually have much effect on this kind of sensation. Antidepressant medications such as amitriptyline may be used for relief if it becomes too problematic, or other remedies, such as antiepileptic drugs (gabapentin and carbamazepine), may be used to try and alter conduction along the nerve fibres, which has produced the sensation.

    ‘Pins and needles’

    MS af fects many nerve pathways in the CNS, and those related to sensations in the body are particularly prone to damage. Depending on where the damage occurs, you may feel all sorts of unusual sensations in those areas. The sensation of pins and needles commonly occurs with the interruption and resumption of nerve signals to particular areas of the body. Closely related sensations, such as tingling, may also appear occasionally, as signals to and from the af fected area vary. Some clinicians treat this symptom as relatively unimportant, albeit a disconcerting, symptom of MS, for it has generally a less direct effect on everyday activities than ‘motor (movement) symptoms’, and is associated with a slower course of MS. As with the burning sensation, there is no specific drug therapy for such symptoms although, if the symptoms are associated with pain, a tricyclic antidepressant or sometimes medications such as carbamazepine and valproic acid (usually given for antiepileptic purposes) can help.

    Trembling

    Most people have some kind of ‘tremor’ (or trembling), albeit slight, as there are several different types. Your limbs will normally be the parts affected, as the course of the disease progresses. The most common is what is known as action tremor, although it can be described as intention tremor, goal-directed tremor, or hyperkinetic tremor. This is caused by damage to the nerve pathways to the balance centre of the brain. The nearer your hand approaches an object when reaching for it, the more your hand trembles, so it then becomes difficult either to pick up or control something like a cup. Other kinds of tremor are much rarer.
    As there are no specific drugs for the treatment of action tremor, doctors tend to try a range of dif ferent ones in the hope that one or other may prove of benefit, but it is difficult to avoid unwanted effects. Drugs known as beta-blockers, such as propranolol, might help. People often tend to develop ways of helping themselves. These include such things as:

    • bracing an arm against a piece of furniture;
    • making the arm immobile for a specific task;
    • working out movements with a physiotherapist that are as smooth as possible;
    • adding weights to an arm, using weighted utensils such as forks and spoons.

    A far more drastic approach to reduce action tremor is through surgery, but currently this operation carries considerable risks of exacerbating other problems, and could make life worse, not better, for you. Various newer surgical procedures to control tremor are under development, including the implantation of electrodes, but many of these are still only experimental and, in any case, may only be useful for a small group of people with MS.

    Numbness

    Numbness is quite a common and upsetting symptom in MS, although it can be only temporary if you have a relapse. There may be other strange and sometimes unpleasant skin-based sensations. Usually the worst of these will ‘wear off ’ relatively quickly, although they may stay for days and sometimes longer. Because sensory nerves, in various parts of the CNS, link to all parts of your body, inflammation or damage to them can produce numbness almost anywhere, but particularly in your feet, hands, limbs or face. You may think the nerve damage has occurred where the numbness is; in fact the damage will be in the CNS, often well away from where the symptom appears. Numbness in the hands can cause difficulties for holding or picking things up, particularly those that are hot or sharp. Check carefully where and how you are walking, if the numbness affects your legs.
    Even though depression may not be present, again tricyclic anti- depressants can help to reduce the feeling of persistent numbness, and intravenous steroids can be used when the numbness is, or appears to be, associated with a relapse.

    Sensations and heat

    The extent to which the symptoms of MS appear to change with temperature differences has been known for a long time. In fact, with what seems now to be extraordinary insensitivity, people with suspected MS used to undergo the ‘hot bath’ test, in which they were given a hot bath. If their symptoms became worse, this was thought to indicate that MS was indeed a possible diagnosis.
    Heat, particularly enhanced body heat, changes the process of nerve conduction, and may result in the sensation of weak muscles and limbs. Heat can also exacerbate other symptoms, such as pain associated with inefficient nerve transmission. Conversely, when the core body tempera- ture is cooler, nerve conduction and muscle function appear to be better, particularly in MS. In general, therefore, people with MS are right to try and avoid situations where their core body temperature is raised.
    Tests have been made on body cooling systems, which could be used to maintain a lower body temperature in hot conditions, or more generally to improve the performance of a person with MS in many dif ferent temperature ranges. Other approaches to the problem have been more limited and functional: the use of cold or frozen gel packs held in special vests, so that working or undertaking other activities in hot conditions does not raise your body temperature to any great degree.

  • Sensations and pain

    Of course, not every twinge, or pain, results from the Multiple Sclerosis. When you visit your doctor, particularly your GP, you may find that he or she puts virtually all your symptoms down to MS itself. Whilst statistically it is probably correct that most of your symptoms will be related to the Multiple Sclerosis, many will not. It is easy for both of you to say ‘Oh, that’s another symptom of MS’ and not realize that, like other people, you can have other everyday problems. It is important that both are recognized in relation to pain as well as other symptoms.
    If GPs do confuse Multiple Sclerosis and non-MS symptoms, this is not through incompetence – even specialists sometimes have similar problems. Most GPs have so few people with MS on their patient lists – often only one or two – that, because of all the other pressing demands on their time, they have not been able to study, and experience, all the many twists and turns of the disease. Try a little persistence if you feel that your symptoms are not being treated as carefully as you wish; you can always ask for a second opinion if necessary.

  • Sexual relationships: Problems during intercourse

    Incontinence

    If you haven’t had one already, visit your doctor for an assessment of the problems you have with incontinence. Try and ensure that you have no urinary infections, which can make your bladder problems worse if left untreated.
    The following advice can help reduce the risk of ‘accidents’ during intercourse:

    • Reduce your intake of fluids for an hour or two beforehand.
    • If you are self-catheterizing, do so shortly before you begin.
    • If you are taking drugs to reduce urgency because of a bladder storage problem, take these about 30 minutes beforehand
    to ensure as far as possible that no spontaneous bladder contractions occur.
    • You may need to ensure more vaginal lubrication, with something such as K-Y Jelly.
    • Check out gently and sensitively positions in which you both feel comfortable, and in which you feel you are less likely to have problems with leakage.
    • If the woman has an indwelling catheter, then several positions may be better than others (remember also to empty the collecting bag, and tape the catheter to prevent it moving): a rear entry position may be easiest to manage, lying on your sides with the man behind; or, while the man kneels, the woman could lie on her back with her legs over his shoulders.
    • Alternatively if the man kneels and, as it were, sits on his knees with the woman in front of him with her legs over his shoulders, then gentle movements in this position should be more comfortable. If the woman has problems with spasticity in her legs, then such a position is likely to reduce the possibility of annoying cramps and rigidity.
    • The male partner could use a condom, which might be useful for other reasons as well.

    Pain

    Low levels of sexual arousal can reduce lubrication in the woman, but it can also be due to damage to nerve pathways in the mid- and upper spinal cord area, which leads to inadequate stimulation of the lower nerve pathways to the genital area; certain drugs taken for other purposes – such as urinary problems – also dry up vaginal secretions. Sometimes lubrication can be helped by direct stimulation of the genital area; or try to set up an environment which is relaxing and conducive to sexual thoughts and experiences. As far as additional lubrication is concerned, K-Y Jelly or a similar water-soluble substance can be very helpful. Substances like Vaseline are not recommended because they do not dissolve in water, and they are likely to leave residues which could give rise to infections. They can also create holes and tears in condoms.

    Spasticity

    Check with your doctor that the general control of your spasticity is as good as it can be. Try and keep your muscles as well toned as possible through regular exercises, and use appropriate drugs such as baclofen as necessary to give additional control.
    There are also certain positions for sexual activity that appear to make the muscular spasms less likely, although it is important that you explore other possibilities than those mentioned below, for you may find another position that suits you both very well. For a man who may have difficulty with spasms or rigidity in his legs, then sitting in an appropriate chair (without arms) would allow his partner to sit on his penis either facing him or with her back to him. For a woman, lying on her side may help, perhaps with a towel or other material between your legs for more comfort. Your partner can then approach you from behind. Another possibility is to lie on your back towards the edge of your bed with the lower part of your legs hanging loosely off the bed.

    Fatigue

    As with other symptoms associated with MS, it is important to discuss this with your doctor who will assess the best means of managing it. Although there are one or two drugs which may help (for example amantadine or pemoline) and which – if prescribed for you – might be taken a few minutes before sexual activity, currently the best help is through various appropriate lifestyle changes.
    Consider when you feel least fatigued. Although this may not necessarily be the time when you feel that you should be having sex – such as in the morning, or during the day, rather than at a more conventional time – you may be less tired and enjoy it more. Rather than thinking of sexual intercourse as the major element, you could agree with your partner to engage in some other less energetic sexual activities
    – such as gentle stroking or foreplay – that you could participate in more frequently. As with so many other aspects of living with MS, it is a question of finding ways to adapt to the situation through experimentation.