Ask the expert: Managing pain


28 January 2019

Pain in MS can come in many different forms. Burning, throbbing, aching, stabbing, numbness and crawling are just some of the many ways that people with MS describe it. To shed some light on how pain is managed in MS, we put some of your questions to consultant nurse in pain management, Sue Barnes.

What medication is available to treat pain and how effective is it?

Sue says: Different types of pain are treated with different medication. Your GP or your MS team will ask you to describe your pain before prescribing any medication to help determine the type of pain.

Pain in our muscles, joints and ligaments can be caused by changes in our posture and the way that we walk and move – this kind of pain is called musculoskeletal pain. Any sort of musculoskeletal pain, for instance pain on movement and bending, would be treated with your traditional painkilling tablets like paracetamol and codeine, or in some cases, but only taken for short periods of time, ibuprofen or naproxen.

Neuropathic pain, or nerve pain, is caused by our nerves misbehaving and misinterpreting messages. People often describe this sensation as a burning or shooting pain, or numbness or pins and needles. This type of pain is treated with medications that are not traditional pain medications, such as amitriptyline, duloxetine, gabapentin and pregablin. These medications are used for depression and epilepsy but they can actually be very effective at calming down those misbehaving pain nerves and reducing the constant firing of pain nerves.

When we talk about nerves misbehaving it can create a very intense pain. When pain is very intense it can be as though somebody has turned up the music really loud and so it becomes all-consuming and you can't think of anything else. Medication for nerve pain is going to try and work on those misbehaving pain nerves and reduce the intensity of that pain and make it more of a background noise rather than that loud, intrusive kind of sensation. Unfortunately they can't completely stop that sensation, they can only reduce it to more of a background level.

Is there anything I can do to manage pain myself, like lifestyle changes and complementary therapies?

Sue says: Managing pain is very much a team effort with you and your MS team. Medications only play a small part in reducing pain – we generally say to people that realistically pain medication will only provide 30–40% of your pain relief. So although health professionals can prescribe medication to help manage your pain, you very much have a role to play too. How you manage your MS and the day-to-day activities you take part in will play a big contributing role in living with persistent pain and managing it successfully.

We talk to people a lot about pacing our activities, for example breaking down everyday tasks into smaller chunks so you're not pushing yourself too much and potentially making your pain worse. We also talk to people about the benefits of self-management strategies such as relaxation and mindfulness. Living with pain is extremely frustrating and stressful; it is a natural stimulant to our body which make us feel more anxious. This in turn causes our bodies to produce more adrenalin which fuels our pain nerves, so they become more active, and creates muscle tension. It is very helpful if you can find a way to decant some of the stress that the pain brings and this is where complementary therapies can be really beneficial. Some people use therapies such as Tai Chi, Pilates, acupuncture and aromatherapy which can all help.

Experiencing pain so frequently makes me feel really low in mood at times. What can I do?

Sue says: We hear this a lot in our pain centre. I think it is helpful to remember that we are human beings and not robots so our pain isn't just a physical hurting sensation. It affects our thoughts, feelings and emotions which all go hand-in-hand with each other to influence the pain system. 

Being in pain is distressing and it can make us feel very helpless and frustrated. Eventually it can make our mood feel a little bit low and we can sometimes end up feeling depressed. It's important to let your GP or someone in your MS team know if you're feeling like this. We know that if our mood gets low, it's as though somebody has turned up the intensity of our pain. 

It is important to recognise when your mood is low and perhaps consider doing an activity you enjoy during this time. Sometimes we can get very focused on doing the everyday tasks that we must do rather than thinking about the time and energy we could spend each day on doing something we find enjoyable. Finding an activity that you find pleasurable and enjoyable can be really useful because this will help to release your own natural endorphins – which are your feel good chemicals – helping to lift your mood in a more natural way. It could be anything from a short walk in the countryside to drawing or painting – anything that makes you feel good.

What treatments are most successful in managing trigeminal neuralgia?

Sue says: We see lots of people with MS who unfortunately have facial pain as a result of trigeminal neuralgia. This pain is often described as a brief, intense, electric shock-like sensation, or a sharp, stabbing sensation down the side of the face. It is usually caused by pressure on the trigeminal nerve from a nearby blood vessel which causes the protective covering around the nerve to wear away. This makes the nerve more excitable and sensitive, causing it to activate pain signals with little or no trigger. The trigeminal nerve controls the muscles you use when chewing and is responsible for sensation in your face, including the forehead, above the eyebrow, the cheek area and the jaw.

It can often be mistaken for dental pain. Sometimes there can be no trigger for the pain or it can be triggered by everyday activities like talking, brushing your teeth, shaving or touching your face. It's best to seek advice from your GP or MS nurse if you're experiencing this type of facial pain. They may refer you on to a specialist pain centre to discuss management options.

Treatment options that a neurosurgeon may consider after reviewing an MRI scan of your brain include surgery to prevent the blood vessel from rubbing against the trigeminal nerve, or a glycerol injection to coat the nerve at the area of damage and reduce its sensitivity. There are other procedures that involve using either chemicals or heat to damage the nerve.

Alternatively if we feel the trigeminal nerve is misbehaving and firing but it's not being compressed by a blood vessel, or there's nothing irritating that nerve that can be seen on an MRI scan, then we look at medication. Carbamazepine would be the drug that your GP or someone in your team would start with.

Who should I speak to if my treatment for nerve pain isn't working?

Sue says: Your GP or MS nurse can go through alternative options if your current treatment isn't working. GPs are very knowledgeable about the right medications to put you on or it may be someone in your MS team that will be able to support you and help you decide what treatments and management strategies you'd like to try next.

There is the option to ask to be referred to a specialist pain centre. We see people who have got long-term pain as a result of MS who have found that their medications are helping a little but not a great deal. We help people learn how to manage the knock-on effects of living with persistent pain and talk through strategies for handling pain differently. We don't have any magic drugs; it is very much about learning self-management strategies, gaining a better understanding of your condition, aiming to stay active and maintaining a positive attitude despite dealing with ongoing pain.

Sue Barnes is a consultant nurse in pain management at Salford Royal NHS Foundation Trust. She has a specialist interest in the management of neuropathic pain and has treated many people with MS.

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