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Chronic pain in people with MS is very common and will differ from person to person. Join MS Plus nurse advisor, Bridie Phillips as she discusses multiple sclerosis pain and offers tips on how to best manage your MS pain symptoms.

Presenter

Bridie Phillips is a Registered Nurse and has committed the last 15 years to community health, predominantly in palliative care, pain management and within the MS community. Bridie currently works as a MS Plus Nurse Advisor.

MS Plus acknowledges The traditional custodians of the land this podcast is recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders, past and present.

Nicola: Welcome to the MS Education Podcast Series. Thank you for joining me. I'm Nicola Graham and in each episode we're going to be joined by an expert to discuss strategies for living well with MS.

Today we're looking at pain and multiple sclerosis and how you can best manage your symptoms. I'm delighted to be joined by our resident MS expert Bridie Phillips who's a nurse with our MS Nurse Advisor Service.

Welcome Bridie.

Bridie: Ah, thanks Nicola. Thanks for inviting me along to this podcast. I've been a nurse now for about 33 years, which I guess kind of shows my age.

But the last 10 years I've really dedicated to community health. I work as one of two nurse advisors here at MS and I've got a specific interest in pain, having worked in palliative care and the disability sector and, luckily enough, I had the opportunity to work in a pain clinic. I've also have quite an extensive personal understanding of how debilitating chronic pain can be.

Nicola: Okay, thanks Bridie. So, let's get started, and can you tell me how common is pain for people who've got multiple sclerosis?

Bridie: Actually Nicola, pain is really common in our MS community, and we think around 64 to 69 percent of people with MS actually have chronic pain.

Nicola: What sort of pain do people with MS have?

Bridie: Okay Nicola, well the first thing to note here is that no two people have pain in the same way with MS and people use lots of different words to describe their pain, which is really important when you're presenting to a medical professional, because it gives them a bit of a clue as to where that pain is coming from.

You might have heard people talking about their pain by being annoying, uncomfortable, excruciating, burning, cold, buzzing, shooting, dull, throbbing, or sharp. Keeping that in mind, we can divide MS pain into three main categories, and the first of this is musculoskeletal pain and a lot of this can be due to muscular weakness or spasticity and imbalance and it's often seen in the hips, legs and arms and particularly when we're immobile for a while and our tendons and ligaments and muscles aren't moved around.

I guess that leads into a bit of back pain because of improper seating or often incorrect posture while you're walking. So, someone might have a foot drop or tend to be leaning to one side so that kind of puts your spinal alignment out. Some people get contractures, which is associated with weakness and spasticity. If you think of a contracture, it's a bit like if you've seen someone with a clawed hand and they can't open their fingers, leg spasms, particularly at night and other muscular cramps are all really common musculoskeletal type pains.

Then we move into a category called paroxysmal pains, which is a strange word, but basically this is seen in between five and 10 percent of people with MS and these are those sudden severe pains that occur without warning or injury, and the symptoms might last for seconds or minutes. You might've heard of Lhermitte’s sign, trigeminal neuralgia, some people get burning sensations and itching, I guess more of a shooting pain that people describe.

The most common and distressing of the pain syndromes in MS is neurogenic pain and it's actually caused by damage to the nerves in the brain and the spinal cord and that can include altered sensations such as pins and needles, numbness, crawling or burning feelings. Some people will say they feel like they've got ants crawling on them. That is sort of a neurogenic type response.

Examples of nerve pain including painful sensations in the side of the face, like trigeminal neuralgia, and a tight feeling around the chest called the MS hug. The other one is optic neuritis which is very common in MS and it can give a sharp knife like pain behind the eye and, often you can get some pain in the limbs as well, and that's really quite common.

Nicola: Bridie, I really had no idea of all the different categories and sources of pain in MS, so I feel like I've got a better understanding now of all the different types of pain and of course, pain is a hidden symptom. We can't see that a person is in pain and obviously that comes with its own set of problems.

Bridie: Yes, it's actually a real problem because, unlike a broken leg where you've got your pain and your discomfort and it's really obvious there's something wrong, you can actually look really well but yet be seriously affected and debilitated by the pain and, unfortunately, pain is one of those invisible symptoms.

Nicola: And Bridie, can you talk a little bit then about what pain is, biologically, and how it works, the sort of biological mechanics, if you like, because my understanding is that pain is not just physical, but in fact there's quite a significant emotional component to pain as well.

Bridie: Yes, you're right, Nicola, there's definitely both a physical and emotional component to pain, and both benefit from management strategies. The International Association for the Study of Pain defines pain as, and I'll read the direct quote, “an unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage.”

So, pain therefore has both a physical and a psychological component, and pain is often described by how long it lasts. So, if we're looking at this we've got little categories that happen here, so acute pain, it begins suddenly and then improves or disappears. It might reappear from time to time and it's usually an intense sharp, burning or shooting feeling.

Chronic pain, which is really common in MS, is a longer lasting pain. It may feel better at some times but never goes away completely.

And then paroxysmal symptoms, as we've mentioned before, begin suddenly, and only last for a few seconds or a few minutes at the most, and may reappear a few times or many times in a day in similar short bursts.

The thing to say here is pain in MS can feel very odd and seem difficult to explain. It's complex, and when pain persists the pain system can become overprotective and you can become centrally sensitised where the nervous system goes into a process called wind up, and your body gets regulated into a persistent state of high reactivity.

Nicola: I can imagine that wind up situation where your body is almost over stimulated and over vigilant and over reactive.

Bridie: Yes, and it's really debilitating.

Nicola: Yes, I can really imagine that. So, how do people living with MS manage their pain, Bridie?

The all-important question: What do we do?

Bridie: Okay, so it needs to be managed. It's not sustainable to have long term pain. It really affects your physical and emotional state, so you must talk to your GP or neurologist.

First point. It's got to be sorted, and the only one that can really prescribe anything for you, or start the process, are medical doctors.

So, we look at drugs, and drugs are obviously one of the first line management of pain, and neuropathic pain, which is really difficult to treat, responds well to drugs that are traditionally used for epilepsy or depression. But they've actually been shown to be effective in pain management, along with antispasmodic, anti-inflammatory and muscle relaxants.

Your doctor will be able to discuss these with you in great detail and set up some sort of management plan to suit your needs. So, it’s really important that you are able to express the type of pain you've got, when it happens and the triggers, the length of the pain, and to do that, a really good idea is to keep a pain diary.

So, you can just basically put down, at 10 o'clock last night I had this intense pain down my spine, into my feet, lasted 30 seconds, took some Panadol, didn't do much, went to bed, had the pain all night, that sort of thing, and you can rate it on a pain score from 0 to 10.

Nicola: Sorry, Bridie, I think our memory with pain can be really unreliable.

Bridie: Absolutely. Absolutely. And sometimes you can start to see a pattern that's occurring as well, so it's really, really important, and then if you score it from 0 to 10, with 10 being the worst amount of pain, it also gives a bit of a visual as to what's worked, what hasn't worked, what the triggers are, when it was most intense, the time of day, that sort of thing.

Consider that if you've got an issue, rehabilitation is really important. Pain clinics can play a really good role. They do a lot of holistic care, including drug therapy, interventional procedures, physio and psychology, and there are public and private pain clinics around.

Physiotherapy and exercise are brilliant, because we know deconditioning of your body can make your pain worse, so it can be as simple as gentle stretching, strength training, Tai Chi, yoga, walking, gym, depending on your circumstances. It’s really important that you keep moving and changing your position regularly.

Posture, if you're in an office position where you're sitting in a chair, make sure you're sitting correctly, using props to keep your spine aligned and, making sure that you're ergonomically set up properly. You need to pace your activities, breaking larger tasks into smaller chunks, and taking regular breaks.

You need to change your habits, get supportive mattresses, do your ironing when you're sitting, get your groceries online, so think about some other ways of doing things. Don't forget cooling products in hot weather, pacing your activities and the time of day for your activity. There's nothing wrong with using heat packs or ice packs as you feel that they work, some people find one or the other better.

Distraction. Take your mind off it. Go and do something if you're in a bit of pain to try and distract yourself. Relaxation, mindfulness, lying in bed at night, listen to some soothing music. Cognitive behavioural therapy, staying positive and doing a bit of clinical psychology, really helps the emotional state.

Combinations of all of those work really well together, and learning coping strategies, so counselling, mental health impacts, physical health, we know that, so making changes to everyday life, so pain has less impact.

Managing your stress, heat sensitivity, cold sensitivity, fatigue, poor sleep and depression, and then you can, you know, look at things like little TENS machines and other sort of nerve stimulators that some people find valuable.

Nicola: Well, Bridie, there's a lot of really great tips in there.

Can I ask you a personal question? You said you've had chronic pain yourself. What have you found out of that list has been most effective for you? I realise that wouldn't apply necessarily to anybody else, but I'm just interested what you found has been really beneficial for you Bridie.

Bridie: Our pain clinic holistic approach. Absolutely. A combination of drugs, procedure, exercise, rehabilitation, psychology positive thinking, and talking, expressing, expressing. You really need to remember that your physical and mental health directly impact each other. So, it's really important that you utilise all of the above.

Nicola: And you sing, and I can imagine your singing helps as well.

Bridie: Absolutely. Well, that's a distraction, isn't it? It's a form of distraction, singing in choirs, it releases endorphins. You're completely lost in something. Some people find doing jigsaw puzzles really therapeutic. I know a lot of people at the moment are doing paint by numbers and arts and crafts. It's just anything that you get enjoyment out of that can distract you from what's actually going on can be really good, and it might be as simple as watching a film, going to a movie, just doing something that you enjoy. And I can tell you that the pain psychologists, they find ways and strategies for you to think about your pain in a different way and how to offload it from yourself. They're very, very clever in their strategies and it's really underestimated and a very, very valuable part of a holistic pain management approach.

Nicola: Fantastic, Bridie. Now I know that our listeners are going to want to hear about the use of cannabis and MS pain. I've heard a lot of things. I'm not sure what is fact and what is fiction, so can you help us in this area, please.?

Bridie: Yes, what have you heard, Nicola?

Nicola: Well, I do sit close to you, so I have overheard some of your conversations, but I've heard firstly that cannabis is useful for pain management in MS. Is there any evidence? Is that the case, Bridie?

Bridie: Yes, thanks Nicola. Yes, it's an area that has been coming up more and more with all the media and everything that's been going on around cannabis, and I think the best way to answer this is actually by a direct quote from MS Research Australia.

And they say, “the scientific evidence that medicinal cannabis reduces pain in people with MS is varied, and there is currently less certainty about its benefit. than there is for spasticity and MS.” Now they've done a huge article there on msra.org.au that talks about the human trials and the research that's been happening.

So, if you would like to look into that further, please go and have a look at that because it's quite a complex article but it's very, very interesting, and CBD has been recommended, really for use when approved treatments have been tried and failed.

Nicola: So, Bridie cannabis may help with pain, but it's more indicated for spasticity, is that correct?

Bridie: Yes, that's right. And I know a lot of people have been through lots of technical procedures, lots of drug therapies and all sorts of nerve blocks and things like that for chronic pains, and it's got to the point where all the traditional medications that we know work really well in all the different types of pain scenarios have failed.

And so, people are getting to the point where they're looking at either putting in spinal cord stimulators, going down that track, or they're looking at going to cannabis clinics and trying this. So, there's a little bit of evidence that needs to come through to see whether it's really, really effective.

But the traditional drugs that are around are the ones that we know all the side effects and how they behave with people. So, this is only fairly new, I guess, particularly with the CBD oils, which I'll talk a little bit further about, but Sativex, which is a mouth spray, has been around for a little bit longer, but still very expensive and not on the PBS yet, so, it's an interesting area that I think is going to be explored more and more.

Nicola: Can I ask that question? Can you get high from the cannabis drugs prescribed for people with MS?

Bridie: Yes, that's a good question. So, THC is the main compound responsible for the psychoactive properties of the cannabis. So that's the high associated with the cannabis use. So, the way a person thinks, feels and behaves. CBD appears to be non-psychoactive, and it's believed to have anti psychoactive effects. controlling the highs that the THC cause. So medicinal cannabis products contain specific quantities of these components and they've been carefully prepared and analysed so that the quantity of each ingredients or dose is consistent.

So, your neurologist or pain specialist will decide on how much of each component is required to give you the desired effect that you need for pain relief or spasm relief. So basically, the higher the THC component the more chance of feeling high. So pure CBD is not thought to create a high feeling.

Nicola: Okay, and so next question on that line, can you drive?

Bridie: I get asked this a lot. Medicinal cannabis can impair your driving ability and operating machinery so, no. Incidentally, medicinal cannabis can be detected in the urine a number of days after the last dose, and in Australia, drug driving is a criminal offense, whether it is actually prescribed as medicinal or not, theoretically, no, you can't drive.

So, if you were in an accident, your insurance would not pay for you. And you've also got to note some of the side effects of medicinal cannabis can include things like fatigue, depression, drowsiness, vertigo, poor concentration, thinking and memory, poor balance and confusion. What does that sound like?

It can be very similar to the MS symptoms, can't it? So, I know a number of people who have tried medicinal cannabis but found that the symptoms that they were getting were very like their MS and they couldn't actually cope with that. And then a number of people who have wanted to try it have been deterred by the fact that, theoretically, you cannot drive on it.

Nicola: There's some really serious things to consider there.

If you do want to pursue the line further, how do you obtain cannabis for medicinal use?

Bridie: Okay, so in Australia, it's tightly regulated and subject to legal requirements. It can only really be accessed through a doctor, and they must meet certain requirements, obtain permits and comply with relevant state laws.

So, you must be assessed by a doctor and you need to sign relevant consent and agreement forms, there's different practices around. There are cannabis clinics around and each clinic will have its own set of paperwork, but basically you will find that a lot of doctors cannot prescribe it, so they need to get this permission to be able to do that initially.

Nicola: And how do you take it? Is it a tablet, an injection, and what sort of cost are we talking about, Bridie?

Bridie: Alright. Can I say that both of these are very expensive? Okay, so we're talking in excess of a couple of hundred dollars a month. So, just to be aware that are both very expensive. Sativex is a mouth spray and it's approved by the TGA for MS spasticity, but it hasn't yet been approved for listing on the PBS.

So different pharmacies can have different prices on it, obviously, and it can be a bit variant. But if your neurologist or rehab physician think it's the right treatment for you, then you can explore that a little bit further. CBD oil is taken orally via a dropper, and it's a tiny bottle, but very, very expensive.

Under some certain conditions, certain health practitioners are able to access what we call a special access scheme, so it's worth having a chat to your doctor to see whether one, cannabis is appropriate for you, two, what sort of cannabis is appropriate for you, and three, whether you can access it under a special scheme.

Nicola: And it really is when other lines and medications haven't worked for you.

Bridie: You want to try something that has been around, and you know how it behaves and, how it's meant to work first before you go to the unknown, I guess. We get lots of questions and some people find it very, very therapeutic, some people don't, and it's really an individual decision between yourselves and your medical professional, whether it is appropriate for you.

Nicola: So finally, Bridie, on that note, where do you go for help to manage pain? You've mentioned pain clinics etc, but could you just summarise that for us please?

Bridie: Yes, absolutely. Talk to your MS nurse, GP, neurologist, make it known that you've got pain. Consider a referral to a holistic pain management clinic. They have pain programs, both in patients and out patients, they have day programs, short courses. There's a lot of interest in pain these days.

Psychologists, preferably one that is a pain psychologist, to look at how to look after your emotional state and your mind in terms of this. Your allied health, your physios, occupational therapists, myotherapy, massage, acupuncture, yoga, mindfulness and meditation. Brilliant. Heat and ice packs. Don't forget really simple things.

And I guess the biggest thing is to remember that your pain is actually a personal experience. No one else can see what you're feeling or experiencing. So, keeping that diary of descriptors, triggers, impacts and things that you've tried that help or don't help so that you can explain that to your health professional is a really good thing. Know there's help out there, you just need to know where to go for this and understand that your pain is real and it can be really quite debilitating but can be managed really well with the right supports in place.

Nicola: That's really encouraging, Bridie, and what other resources can our listeners tap into?

Bridie: Okay, there are some articles and books. There's: Explain Pain by David Butler and Laura Moseley. Tame the Beast, website www.tamethebeast.org. Agency for Clinical Innovation, see website www.aci.health.nsw.gov.au/chronic-pain. Pain health, website painhealth.csse.uwa.edu au. Online treatment programs. There's a place called This Way Up and Mind Spot, which you can Google online and, if you Google pain clinics, Pain Australia is a really good website. It comes up with all the pain clinics listed in each state and a brilliant website to link you around.

But there are more and more upcoming, most of the major public hospitals have pain clinics as well. Usually, your neurologist or GP can manage it but if it's getting really complex and you are becoming very, very sensitive to touch and it is becoming quite debilitating, then you know you need to have a really authentic conversation with your neurologist and your GP and then consider maybe involving a pain specialist to assist you further.

Nicola: Bridie, thank you once again. I'm sure our listeners are feeling much more empowered and knowledgeable about how to manage their pain and understand their pain. Thanks for all the information and for sharing, Bridie.

Bridie: That's my pleasure. And if anyone has any pain issues that are listening and you would like to talk them through, please don't hesitate to call MS Connect and speak to one of our nurse advisors.

We're here for you, to help.

Nicola: For more information on anything we've covered today, please get in touch with MS Connect on freecall 1800 042 138 or email [email protected].

And don't forget to find the MS Podcast on your favourite podcast player such as Apple, Google Play, Spotify, Overcast, or you can access the podcast directly from our website, ms.org au.

Published May 2020