“Research from Taiwan indicates that capnellene (GB9), a compound extracted from the soft coral Capnella imbricata, could prove useful for treating neuropathy and neuropathic pain.”

When pain is the result of a disruption or alteration of nerve conduction, it is termed neurogenic or neuropathic. Pain caused by nerve damage can range from a mild prickling to severe burning, itching or aching and usually requires different treatment from musculoskeletal pain.

Pain management is approached medically, behaviourally, physically and in some cases, surgically. If it is treated with drugs it is always a balance of risk versus benefit. In other words, medication side effects need to be considered and continually evaluated in terms of their impact on a person’s quality of life.

Neuropathic pain responds variably to currently available drugs; painkillers, antidepressants and anti-epilepsy drugs often have no effect.

Usual medications

Carbamazepine (anticonvulsant): Side effects Drowsiness, Dizziness, Coordination difficulties

Phenytoin (anticonvulsant): Side effects Dizziness, Nausea, Insomnia, Uncontrollable eye movements, Coordination difficulties, Slurred speech, Confusion

Baclofen (muscle relaxant): Side effects Weakness, Drowsiness, Dizziness

Gabapentin (anticonvulsant) may also help: Side effects Dizziness, Coordination difficulties, Fatigue

Zhi-Hong Wen. said “Capnellene could be the first of a new generation of painkillers that are more effective than steroids or opiates and do not have their potential side effects or their addiction-forming properties,”

CB09 and its derivative GB10 have been looked at with two proinflammatory molecules which were reduced to almost control levels at the highest GB9 and GB10 concentrations tested.

“We are currently investigating the effects of GB9 and GB10 in other animal models of osteoarthritic pain, multiple sclerosis and Parkinson disease, as the compounds could also be potent therapeutic agents for a range of neuroinflammatory diseases,” says Wen.

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A lot of the pain in MS is due to immobility or poor posture, rather than directly related to damage to the nervous system. In particular, using the same posture repeatedly with mobility aids (e.g. a frame or wheelchair) will put stress on your body, which can cause pain. A physiotherapist can provide useful guidance in this area.

Non-medical approaches to pain management include massage, hydrotherapy, acupuncture and reflexology. However, these activities should be discussed with your doctor beforehand.

Then there are relaxation techniques, meditation, prayer, breathing techniques, self hypnosis and psychological interventions such as psychotherapy.

The most important thing is to get pain treated. You should discuss where and how much pain you have with your healthcare provider. Your own description of the pain is the most important aspect of pain assessment.

Unfortunately, knowing how something feels does not mean it is easy to describe. Health professionals often talk about pain being ‘acute’ (short-term) or ‘chronic’ (long-term). But describing how it affects you will be an individual thing. When you do describe it, use whatever words seem to best sum up what you experience, however odd they may seem at first. Here are just some of the words people use to describe pain:

• squeezing or crushing

• cold

• hot or burning

• sharp

• dull

• like ants under my skin or ‘creepy crawlies’

• like a build up of pressure

• stabbing

• creeping

• like an electric shock

Being able to explain your pain also helps family, friends and carers understand this ‘invisible symptom.’

So let’s look at some of the types of secondary pain in MS

Musculoskeletal Pain

Description

Stiff joints and muscle contractures, caused by the physical stress of immobility. It can affect the neck, the back or limb joints.

Non medical treatments

Stretching exercises, posture & gait examination, orthotics, exercise

(Especially swimming), position changes, support and cushioning, application of heat and cold.

Usual medications

Ibuprofen, diclofenac  and naproxen.

Nerve Pressure Pain

Description

Pain caused by pressure on the nerves from immobility or poor posture.

This can include sciatic nerve pain from pressure on the back of the leg and ulnar nerve pain from pressure on the elbow.

Usual treatment

Correct seating is important, but elevation of the legs will usually relieve pressure pain.

Back Pain

Description

This can be caused by muscle weakness, abnormal posture, spasticity and spasm. It may also occur as a result of osteoporosis or MS lesions in the spinal cord. If the osteoporosis was steroid induced changing treatment options often eliminates the pain

Usual treatment

Evaluation to pinpoint the source of the pain is essential, as treatments differ widely. It is also important to note that back pain is not always related to MS even though we all think that all of our symptoms must stem from it.

Pain from MS symptoms and treatments

Description

It is worth remembering that certain drug treatments can have painful side effects. Some people taking beta interferon, for example, experience headaches and flu-like symptoms such as aching muscles, particularly in the first few months of taking the drug. Ibuprofen and paracetamol can both help control these side effects.

Some people taking Copaxone (glatiramer acetate) notice an uncomfortable feeling of tightness or pain around the chest.

Some MS symptoms can cause pain as well as the symptom itself, such as pressure sores, urinary retention and infections. A particular example is pain due to Optic Neuritis—an MS symptom that occurs when the optic nerve is stretched or inflamed (with pain occurring behind the eyes which is intensified with eye movement). Painful optic neuritis is probably a unique kind of pain. In addition to pain, optic neuritis can be accompanied by blurred vision, visual acuity loss, impaired colour vision and complete or partial loss of vision. This was one of my first symptoms although I have fortunately never lost total sight. The painful eye movement did however make it almost impossible to reverse the car wherein I had to look over my shoulder. I also did not seek help to have this treated but Corticosteroids (oral prednisone and intravenous methylprednisolone) can significantly increase the rate of recovery from optic neuritis.

It is also treated with painkillers like ibuprofen, diclofenac or naproxen.

People with MS can also experience pain as a result of treatment

for the condition. Two examples include injection-site reactions and steroid-induced osteoporosis.

Usual treatment

It is very important to discuss each particular problem with your healthcare provider. Fortunately, fixing the initial problem or changing treatment options often eliminates the pain.

For injections site reactions there are a number of things you can do.

If you get lumps post-injection then try a warming (not hot) pad pre-injection to loosen the sub-coetaneous fat. If the lumps persist then gently massage the area but if the lump develops a discharge contact your doctor as it is possible it has become infected.

If you experience itching or stinging then try using an ice pack for a short period of time before and after the injection. If this does not work, discuss it with your doctor as you may need an antihistamine.

For simple redness and inflammation that lasts more than 24hours you could try using a a cream or gel such as Aloe Vera, Witch Hazel or Arnica but do noit try any other opver the counter cream without discussing with your doctor.

Always let the medication warm up to room temperature before injecting and if you’re using an Autoject the setting should be adjusted based on the depth of subcutaneous tissue in the area you plan to use.

Generally these reactions diminish as you become accustomed to injecting and remember to do it at the prescribed interval without missing a dose.

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Interestingly the most common areas for this type of pain are the face, neck

and torso so let’s start at the top with TGN

Trigeminal Neuralgia

TGN is an excruciating, sharp, shock-like pain in one side of the face, lasting seconds to minutes and often repeated; may be triggered by speaking or a touch. It usually settles spontaneously by itself over several weeks. Unfortunately many of the side effects of the usual drugs mimic the symptoms experienced in MS anyway so it is difficult to tell the cause and it may lead to alarm that the disease is getting worse. To allay these fears I have outlined the usual side effects of each drug,

Usual medications

Carbamazepine (anticonvulsant): Side effects Drowsiness, Dizziness, Coordination difficulties

Phenytoin (anticonvulsant): Side effects Dizziness, Nausea, Insomnia, Uncontrollable eye movements, Coordination difficulties, Slurred speech, Confusion

Baclofen (muscle relaxant): Side effects Weakness, Drowsiness, Dizziness

Gabapentin (anticonvulsant) may also help: Side effects Dizziness, Coordination difficulties, Fatigue

Lhermite’s Sign/Symptom

This is a  brief, stabbing, shock-like sensation that runs from the back of the head down the spine, (like an electric shock) brought on by bending the neck forward. It is not always painful.

Usual medications

Carbamazepine or Phenytoin (see above)

Other treatments

A soft collar may limit neck movement. Most often Lhermite’s symptom disappears spontaneously and medical treatment is not necessary.

Tonic Spasms

These, known as spasticity are sudden and painful muscle contractions, producing stiffness of the whole limb, which can last up to two minutes.

Usual medications

Carbamazepine, phenytoin, and baclofen (see above) and

Clonazepam (anticonvulsant): side effects Sedation, Dizziness

Dysaesthetic Pain in Limbs and Trunk

Dysaesthetic means any impairment of the senses especially the sense of touch

This is a condition in which light physical contact of the skin causes pain; Such as the weight of sheets in bed.  It involves a persistent burning, tingling, tightness, or aching which may be worse at night and after exercise It may be aggravated by temperature and weather.

Patients frequently state that dysaesthetic burning corresponds with what they imagine a hell might be like. Some of the descriptions given by patients include:

- “Like Hell’s hottest knives tearing at my flesh”
- “Like my flesh is being consumed in a fire”
- “Like my flesh is being torn from my body”
- “Like my flesh has been burned off”
- “A pain worse than pain”
- “Indescribable burning”
- “Like an alien pain monster has taken over my body and has ignited my flesh”

Usual medications

Nortriptyline and amitriptyline.(anti-depressants): side effects Dry mouth, Blurred vision, Sedation, Urinary retention

Gabapentin, (see above)

Tegretol (Carbamazepine – see above) and Epilim (sodium valproate – anti epileptic) may also be useful.

Side effects of Epilim nausea, diarrhoea, increased appetite and weight gain, shaky movements, tremor, drowsiness, confusion, temporary hair loss

Other treatments

• Application of cold, pressure stockings
• Capsaicin ointment/cream. Capsaicin is the active ingredient in chilli peppers. It’s what gives chilli peppers their kick. When it is applied to the skin, capsaicin cream has been found to deplete substance P— a neurochemical that transmits pain—which desensitizes a person to pain. Capsaicin cream produces a temporary reduction in pain, so it must be used regularly to provide prolonged pain relief.

Capsaicin can cause an intense burning feeling when it is applied, particularly if it is used less than 3-4 times a day, or if it is applied just after taking a hot bath or shower. However, this side-effect tends to ease off with regular use. Capsaicin cream should not be applied to broken or inflamed skin. Wash your hands immediately after applying capsaicin cream.

In my next article I will be discussing secondary pain in MS.

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Pain is generally not associated with MS but findings of worldwide MS research studies suggest that pain is a key factor in MS, indeed approximately two thirds of people with MS experience pain at some time during the course of the disease; pain is undertreated; and that pain is associated with depression, anxiety and fatigue although not the sole cause of these symptoms.

Although MS pain was first recognised in the 1800s, it was not until the 1980s that the incidence, prevalence and characteristics of MS pain were described.

The severity or frequency of pain varies from person to person. It cannot be predicted by a person’s age, gender, or type of MS. However, the longer someone has had MS, the more likely they are to experience pain as one of their symptoms.

The most common pain syndromes experienced with MS include:

● headache (seen more in MS than the general population)
● continuous burning pain in the extremities
● back pain
● painful tonic spasms (a cramping, pulling pain)

Why does pain occur in MS?

Pain is a sensory symptom directly related to two occurrences – the disruption of central nervous system myelin and the effects of disability.

In other words pain may be directly related to the disease itself (e.g. pain associated with nerve damage), or it may develop because of other MS problems (e.g. pain caused by painful muscle contractions and stiffened joints). Fortunately, most pain in MS can be treated.

When pain is the result of a disruption or alteration of nerve conduction, it is termed neurogenic or neuropathic. Pain caused by nerve damage can range from a mild prickling to severe burning, itching or aching and usually requires different treatment from musculoskeletal pain. In some chronic pain conditions, the constant barrage of pain signals may overwhelm the central nervous system so much that normal sensations such as the stroke of a hand can trigger pain.

Neurogenic pain

Neurogenic pain is described in varying degrees of severity and can be split into two types:
•    Continuous and steady
•    Spontaneous and intermittent,

One large North American study found that half of those reporting pain said their pain was continuous and severe.

Intermittent, spontaneous pain is characterised as shooting, stabbing, electric shock-like, or searing and is often evoked by stimuli that normally do not cause pain, for example touch, the weight of bed covers, chewing or a cold breeze

Steady neurogenic pain is typified by burning, tingling, tight or band-like sensations, aching and throbbing. This type of pain is often worse at night, worse during temperature change and worsened by exercise.

Then there is tissue damage which may result from disability. This can be secondary to musculoskeletal changes in MS due to weakness or incorrect posture for example. If a person walks in a different way than normal then joints may be stressed and become painful as well.

How can MS pain be treated?

Pain management is approached medically, behaviourally, physically and in some cases, surgically. If it is treated with drugs it is always a balance of risk versus benefit. In other words, medication side effects need to be considered and continually evaluated in terms of their impact on a person’s quality of life.

It is not the remit of this article to identify the drugs used.

Emotional Effects

It is important to recognise the emotional effects of experiencing pain and to develop healthy coping strategies.

Some examples are:

•    Learn relaxation and meditation skills.
•    Concentrate on positive thoughts and activities.
•    Talk to a counsellor.
•    Seek assistance from an MS Society Field Worker or an MS nurse.
•    Contact a support group for people with chronic pain.

In addition some suggestions for managing pain include:

•    Exercising gently and regularly, but only within your limits.
•    Modifying your environment (e.g. comfortable bedding).
•    Considering equipment that may prevent pain from being triggered (e.g. a gripping stick to avoid having to reach).
•    Treating flare-ups as they occur – delay can cause problems.
•    Seeing a physiotherapist regularly.

In future articles I will address the current options in treatment of MS pain

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