MS: Busting the Myths
Around 80% of people will experience pain at some point as a result of their MS. Pain can appear from time-to-time, not at all, or be troublesome and on-going requiring management. MS related pain is unpredictable when looking at the course of someone’s condition and multiple types of pain can be experienced. Pain can be caused by the condition itself due to nerve damage or be due to other problems such as painful muscle contractions and stiffening of the joints. Some types of pain are also commonly seen in the non-MS population, such as headaches or back pain, and therefore it is important to consult with your health professional any pain you are feeling, particularly on-going pain, to understand whether this is caused by your MS or for another reason.
Unmanaged pain can have an impact on your daily life and well-being causing loss of sleep, becoming irritable, angry, stressed or depressed. If you are concerned about pain you are experiencing you should contact your health professional for a review.
There are nerve endings sensitive to pain all over the body that sound an alarm to the brain when something is harming or about to harm it, such as a hot fire or a pulled muscle. The pain signals are generated by nerve cells in muscle and skin and move through the body to the spinal cord and into the brain for processing. The main type of pain in MS mimics these warning signals and usually comes from staying in one position for too long, from muscle spasms or from physical stress caused by compensating for weakness and poor coordination. This is musculoskeletal pain. In contrast, pain may also occur because of injury to the nervous system itself. This pain may arise spontaneously rather than in response to a specific action and generally serves no purpose. Pain caused by nerve damage can range from a mild prickling to severe burning 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. Aside from physical issues, it is extremely important to recognise the emotional effects of experiencing pain and to develop healthy coping strategies.
To that end, it can be useful to:
Some practical suggestions for managing pain include:
Where pain is particularly troublesome, your GP may refer you to a pain clinic at the local hospital, where a specialist will work with you to develop strategies for managing the pain. Non-medical approaches to pain management include massage, hydrotherapy, acupuncture and reflexology. However, these activities must be discussed with your doctor beforehand. It is crucial to note that not all pain experienced by people with MS is due to the condition. Either way, if you are experiencing any significant pain you MUST see you doctor or neurologist to receive an accurate diagnosis and effective treatment. Common MS-related pain issues are listed in the next sections.
Damage to the nervous system can produce pain that feels like tingling or burning. The pain can be very strong, but is usually intermittent. The most common locations for this type of pain are the face, neck and torso.
Trigeminal Neuralgia
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. Usually settles spontaneously by itself over several weeks.
Usual medications: Carbamazepine, phenytoin and baclofen. Gabapentin may also help.
Lhermitte’s Sign/Symptom
A brief, stabbing, shock-like sensation that runs from the back of the head down the spine, brought on by bending the neck forward. It is not always painful.
Usual medications: Carbamazepine or phenytoin.
Other treatments: A soft collar may limit neck movement. Most often this disorder disappears spontaneously and medical treatment is not necessary.
Optic Neuritis
Can cause a sharp, knife like pain behind the eyes and difficulties with vision.
Usual medications: This is treated with methylprednisolone, ibuprofen, diclofenac or naproxen.
Tonic Spasms
Sudden and painful muscle contractions, producing stiffness of the whole limb, which can last up to two minutes.
Usual medications: Carbamazepine, phenytoin, baclofen and clonazepam.
Dysaesthesia or Paraesthesia
A painful, altered sensation causing a persistent burning, tingling, pins and needles, numbnessm itching or crawling. It may be worse at night and after exercise, may be aggravated by temperature and weather.
Usual medications: Nortriptyline and amitriptyline. Gabapentin, tegretol and epilim may also be useful.
Other treatments: Application of cold, pressure stockings, capsaicin ointment.
MS Hug
Feels like a tight band around your chest or rubs or pressure on one side of your torso. It can make it difficult to breathe. The MS hug is not dangerous but all chest pain should be taken seriously and always checked by your doctor in case there is another causal factor requiring medical attention. MS hug can also be felt in the hands, feet or heat and pressure can range from discomfort to very painful.
Nerve Pressure Pain
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.
Mostly, pain in MS is due to damage to muscles, tendons, ligaments or soft tissue. While muscle pain can often be caused by injuries unrelated to MS, immobility or poor posture can cause pain. In particular, using the same posture repeatedly with mobility aids (e.g. a frame or wheelchair) will put stress on the body, which can cause pain. A physiotherapist can provide useful guidance in this area. If using a wheelchair or mobility aid it is important to get a regular, annual or biannual review, by a physio or occupational therapist (OT) to ensure that the equipment is correctly positioned, supportive and suited to your needs. If you have not had a review recently we recommend contacting your GP or your Regional MS Community Support Staff to assist with a referral for a review. It is crucial to consult your doctor beforehand proceeding with any medical or non-medical interventions for pain.
Examples of musculoskeletal pain include:
The first step to managing musculoskeletal pain is to see your health professional to evaluate and pinpoint the source as treatments differ widely. Pain relief medications can be prescribed by your health professional. It is also important to note that musculoskeletal pain is not always related to MS. Stretching exercises, posture & gait examination, orthotics, exercise (especially swimming), position changes, support and cushioning, application of heat and cold can help with managing pain.
Some MS symptoms can cause pain in addition to the symptom itself, such as:
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.
It is important 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. To improve your descriptions keep a pain diary and watch for pain triggers. Notice things that make your pain worse such as certain movements, fatigue, or worsening of other MS symptoms. Rate your pain on a scale of zero to 10 (with zero = no pain and 10 = worst pain). As you rate the pain note any activities, time of day, where you are and whom you are with. Describe the pain (sharp, achy, stinging, etc) and what you did about it.
If you are prescribed medications, learn their names and any side effects. Ask about the best time to take each one and what it is expected to do for you. Work with your doctor to experiment with a variety of reliable treatments, including non-medical approaches if these are appropriate. The most important thing about managing pain is to be well informed about your choices and monitored closely for potential side effects.
Be an advocate in your own pain management.
For more information please view our MSNZ Information Series booklet: Multiple Sclerosis and Pain