Multiple Sclerosis, Massage and Me
By Sharon Livingstone
At the 2018 AMT Annual Conference, Derek Zorzit took to the stage to present a session and placed his walking stick against the lectern. It promptly fell to the floor.
“I have MS,” Derek shrugged. “And it’s playing up a bit at the moment.”
Multiple Sclerosis (MS) has stepped into the spotlight with Australian comedian Tim Ferguson, US actor Selma Blair, and QLD cricketer Jemma Barsby all making their MS public knowledge. But what do massage therapists know about MS? And how can we help?
What is Multiple Sclerosis?
“Multiple Sclerosis (MS) is the most common acquired chronic neurological disease affecting young adults, often diagnosed between the ages of 20 to 40 and, in Australia, affects three times more women than men. As yet, there is no cure.
There is no known single cause of MS, but many genetic and environmental factors have been shown to contribute to its development.
In MS, the body’s own immune system mistakenly attacks and damages the fatty material – called myelin – around the nerves. Myelin is important for protecting and insulating nerves so that the electrical messages that the brain sends to the rest of the body, travel quickly and efficiently.
As the myelin breaks down during a MS attack – a process called demyelination – patches of nerves become exposed and then scarred, which render the nerves unable to communicate messages properly and at risk of subsequent degeneration. This means that the brain cannot talk to other parts of the body, resulting in a range of symptoms that can include a loss of motor function (e.g. walking and hand and arm function, loss of sensation, pain, vision changes and changes to thinking and memory).”
– Multiple Sclerosis Research Australia
Types of MS1
Relapsing remitting MS – is the most common form of MS; it is characterised by flare-ups of the neurological symptoms of MS, also known as relapses or attacks, followed by periods of recovery or remission.
Secondary progressive MS – (SPMS) is a secondary phase of relapsing remitting MS that can develop years, to decades following the initial onset of relapsing symptoms. SPMS is characterised by a progressive worsening of symptoms (accumulation of disability) over time, with no obvious signs of remission.
Primary progressive MS – (PPMS) is diagnosed in approximately 10-15% of people with MS. PPMS is characterised by a progressive worsening of symptoms and disability right from the beginning, without periods of recovery or remission.
Symptoms vary from person to person and can be any combination of the five major health problems, including:2
- Motor control – muscular spasms and problems with weakness, coordination, balance and functioning of the arms and legs
- Fatigue – including heat sensitivity
- Other neurological symptoms – including vertigo, pins and needles, neuralgia and visual disturbances
- Continence problems – including bladder incontinence and constipation
- Neuropsychological symptoms – including depression, cognitive difficulties and memory loss.
Further information on common symptoms can be found here.
MS and Massage – The Research
The available research shows that massage on people with MS may be beneficial, and while this is positive news, the sample size in the studies undertaken to date is small/tiny. Until larger and longer term studies are available, we’ll have to keep our celebrations low-key.
In terms of participation, a survey in the US, with over 3000 respondents, indicated that nearly one quarter seek massage to help with their MS symptoms, so massage is a popular treatment choice for people with MS.
While this review of massage therapy research found evidence that massage can be beneficial for conditions including MS, more specific research includes:
This study found that people with MS had “lower anxiety and less depressed mood immediately following the massage sessions and, by the end of the study, they had improved self-esteem, better body image and image of disease progression, and enhanced social functional status”.
This study looked at the positive affect of abdominal massage on constipation for people with MS.
This study found that massage therapy was slightly better than exercise therapy for people with MS (but not as good as a combination of both massage AND exercise therapy).
Impact of Massage Therapy on Fatigue, Pain, and Spasticity in People with Multiple Sclerosis: a Pilot Study. Massage was found to be safe and effective.
The effects of massage therapy on multiple sclerosis patients’ quality of life and leg function. Massage was found to be safe and may assist in managing stress for people with MS.
Training for Massage Therapists
There are no additional training requirements for remedial massage therapists to treat people living with MS. A good understanding of the symptoms of MS, how the client is impacted by their MS, and a few guidelines will help the client get the most benefit out of their treatment. As Derek says, “even if two people have the same type (of MS), that does not mean that they will present the same”, so that old adage of treating each client as an individual still applies.
Considerations for Massage
Symptoms of MS vary between people, and change over time and between treatments. Communication between massage therapist and client is the key to a good massage experience, especially where the client has MS. This is a non-exhaustive list of considerations:
- Deep massage or strong pressure is often counterproductive.
- Avoid torsion techniques.
- Avoid over-stretching. When stretching soft tissue, get feedback from the client.
- Limit quick, jerky movements.
- Body temperature regulation is often affected by heat – avoid anything that raises body temperatures such as hot stones, heat packs, cupping that involves heat, moxibustion. Also consider the temperature of the treatment table, the amount of draping and the treatment room temperature.
- If the client had steroid treatment or intravenous treatment in the last 24-72 hours, treatment is contraindicated.
Merimbula based Massage Therapist, Melanie King says, “Each time I treat my MS clients, I keep in mind the previous sessions but do not think that today is a follow up from three days or a week ago. I start from the beginning every time. Their condition is changing.”
Melanie adds, “I have to really listen/feel my clients’ bodies and take cues from verbal and non-verbal communication. Limbs and muscles do not respond (in the same way as those in people without MS). Keeping that in mind is critical.”
Because the client knows their body better than their massage therapist does, Melanie suggests speaking with the client about what does and doesn’t feel good. Derek echoes this advice. “With any client you would be asking for feedback on pressure and what feels good/bad. It shouldn’t be any different.”
From her experience, Melanie says that MS clients have disliked light touch, so recommends massage therapists be “purposeful in touch”.
Derek shares an example of why communication between massage therapist and MS client is important:
“There are times when a MT is treating my leg and it just jerks. It’s a reaction that I can’t control. I have learnt to laugh at this now because I expect it. If I am getting a treatment from someone I normally warn them that might happen.”
While Derek hasn’t experienced any negative effects from receiving massages, one of Melanie’s MS clients was bedridden and one of my MS clients had to make a hospital trip. In both cases, the massage too closely followed an intravenous treatment.
I have MS
Derek was 27, fit and strong, and working with the Wallabies (Australian national rugby team) when he was diagnosed with Relapsing Remitting MS. After a particularly busy period, Derek developed “an electrical-like buzzing feeling down my neck into my groin. The best way to describe it would be like the feeling of holding an iridescent light bulb and the buzzing feel that would have. My GP sent me to a neurologist who then referred me for an MRI. I had 7 lesions on my brain. All the size of a tic tac.”
2014 was a big year for Eliza: she got married, the Rabbitohs won the NRL premiership, and she was diagnosed with Relapsing Remitting MS. She was 32.
“My first MS attack came on over one weekend. I eventually lost feeling in my left leg, left arm and right foot – (I had) numbness, and pins and needles. It started on the Friday and slowly crept up until I couldn’t run on the beach with my friend on the Sunday afternoon. I went to work the next day and couldn’t walk back to work from a meeting. I decided to see my GP – hoping it was sciatica – and he sent me to the Emergency Room. The Registrar told me that night it was (either) sciatica, MS or Motor Neurone Disease – I just needed a few scans and tests to confirm. I said I thought – and I was hoping – that it was the first option but my Dr Google searches suggested MS. A few days later, after MRIs and a lumbar puncture, that was it.”
Derek described the shock of his diagnosis and denial of his MS. “The strangest thing was I had several clients at the time with MS and I was not at all like them.”
Ever the pragmatist, Eliza’s focus was on building her medical team, “I was suddenly looking into who was the best neurologist in Sydney – lucky I had some contacts in the medical industry who were able to send me in the right direction. I wanted someone excellent, actively involved in research, someone who was young and enthusiastic and in it for the long haul, and personable.”
Eliza’s main symptoms are extreme fatigue, “like permanent jetlag tired”, pain, pins & needles, numbness, paraesthesia, insomnia, stiffness, and some mobility issues (e.g. limp) from time to time.
Apart from the buzzing, Derek initially had no other symptoms, “I was functioning in every way and it would have been impossible to tell I had MS. My Expanded Disability Status Scale (EDSS) score was 0 out of 10, so I had no disability to speak of.” Now his main symptoms are imbalance, weakness in his right leg and tiredness.
Heat and humidity exacerbate Eliza’s symptoms, making a Sydney summer a challenge. Also overdoing it, sitting at a desk for too many hours, and “being a busy working mum! Wouldn’t change it for the world though.”
Derek agrees. “Stress. Stress is a killer for me. Plus heat. I have had 4 MS attacks in my life. Each one was caused by severe stress. … The fourth is ongoing, and has lasted now for 3 years and the most debilitating I’ve ever had with 3 of my 7 lesions becoming active, causing multiple symptoms.” And necessitating that walking stick.
Eliza has a busy, demanding job and a toddler, so how does she manage her MS?
“6 monthly Ocrevus by injection. Daily oral pain, fatigue and sleep medications, Vitamin D and magnesium (supplements).” And “reduced work days, outsourcing daily activities like cleaning, food prep, and reduced social activities and sports.”
Derek takes Gilenya daily. “The side effects are not great, but it helps my MS from progressing.” In addition, Derek stays fit (I’m not doing a very good job of it at the moment). Daily stretching and mobility exercises for his back and hips are part of Derek’s routine. “I have also been introduced to a device which stimulates my muscles helping with both my stability and muscle activation. This has made a huge change for me. I’m a very social person* and this has not changed at all. The stress things that I can control have been using a mindfulness app called “Calm” which helps a lot before going to bed.”
*Anyone who has met Derek can attest to this.
I Have MS, and I Get Massage
Famously, Derek does swap massages with other massage therapists (currently 3), “In a perfect month, I will get 3 treatments. Massage helps me relax. I get great relief from massage plus it helps with my muscles.”
Eliza also receives massage “each month roughly. I’d love to do it more often but can’t fit it in”. These massages “probably make me more tired but I usually sleep better that night so it helps with my insomnia” but they do make a difference.
But things haven’t always gone well after receiving a massage. Eliza offers this advice for others with MS: “Talk to your neurologist or MS nurse about what the massage therapist should/should not do with you. Don’t get a massage the day after steroids or IV treatment! Make sure you give your body the chance to rest. Trust me – led to pretty extreme pain for me as I didn’t warn my massage therapist”.
Echoing Melanie and Derek, Eliza has some advice for massage therapists:
“Every person with MS has different symptoms so always ask about their personal experience and don’t make any assumptions. Talk to your client about what they can and can’t tolerate and what they want to achieve.”
Eliza continued with massage for the entirety of her pregnancy when she had stopped her MS treatments. Eliza consulted her neurologist and obstetrician about this. Massage took on a dual role in assisting her to manage her MS symptoms and the pregnancy during this time.
Derek has advice for anyone with MS who might be thinking about having massage:
“It’ll help you dummy!!! Stop thinking about it and just do it *slaps palm to forehead*”
I’m a Massage Therapist and I have MS
Derek manages his symptoms at work. The most important way he does this is “Time in between appointments! The worst thing I could do, or any other Massage Therapist for that matter, would be to do back-to-back appointments. I personally need 15-30 mins between appointments to function efficiently.”
During a relapse, where his symptoms get worse, Derek is determined to keep helping his clients.
“I push through and suffer. I tend to sit down a little bit more during these times as I find it easier. It’s a fine line between needing to work to make money and taking care of my health. Normally I can feel my symptoms changing, but that has only come through trial and error. I have also been very up front with my clients and most understand.
One of Derek’s current symptoms is a loss of balance. “Strangely enough, I find this the most embarrassing of my symptoms. I have had to explain to several clients that I’m actually NOT drunk, just having issues with balance. I have also stumbled whilst walking a few times which is highly embarrassing, but I just get over it. It is what it is!”
The Final Word
MS can be an invisible illness. It’s not possible to look at someone and know that they have MS. Symptoms can change on a daily basis – or on the same day. Even though a person with MS looks well, they may be struggling with their symptoms.
Derek sums up his experience with MS.
“I guess one of the biggest things that I have struggled with is looking back at what I used to be able to do and what I can, or more to the point, what I can’t, do now. For example, I have been to Nepal trekking in the mountains 6 times now. I have been the equivalent of ¾ of the way up Mt Everest. And now I need a walking stick to help with walking. I cannot run. Literally can’t do it. If I try, my right leg goes weird and I fall over. That’s a hard pill to swallow. And ALL of this has been in the last 3 years.
I have had to look abroad for treatment as Australia doesn’t offer it. The cost of this is immense, but highly successful. In December 2018 the Australian Government announced a stem cell trial in Sydney for 2019 and I have applied for this. If I get in to this trial, there is a 95% chance that my MS will be halted or even reversed. I am currently waiting on a call any day! Fingers crossed.”
The University of Tasmania is running a Massive Open Online Course (MOOC) on “Understanding MS”. It commences on 29 April 2019 and runs for 6 weeks (2 hours/week). It’s all online and FREE. AMT members can earn 60 CEUs for completion of the course. All the details, and to enrol, are here.
1. Source: Multiple Sclerosis Research Australia
2. Source: Multiple Sclerosis Australia
The author acknowledges the time, generosity and honesty of Eliza and Derek in sharing their experience of MS (and massage), and the assistance of MS Australia and MS Research Australia.
About the Author
Sharon Livingstone is a massage therapist in Sydney, NSW. A love of sport drew her to the industry but discovering job satisfaction came from helping people live with less pain keeps her in it. Sharon is a writer, keen bushwalker and frustrated traveller who is also a coffee snob.