A healthy lifestyle alongside medical treatment is your best bet
It’s another hot Australian summer. I’m doing plenty of gardening and reflecting on an anonymous social media question.
“My MRI shows no new lesions, but I feel like my MS is getting worse. What should I do?”
Avoiding the dreadful information and reckless advice that piled in the comments, I decided to answer fully right here.
First of all, let me express my sadness that you’re hitting a brick wall with your medical team if they don’t believe you. I’m not a doctor, but I believe you.
What you may be experiencing is something called PIRA — progression independent of relapse activity.
PIRA is a clinical measurement. It describes a specific scenario where a person’s physical or cognitive disability gets worse over time, even though they aren’t having any relapses.
If your score worsens and stays worse for 3–6 months—and you haven’t had a relapse in that timeframe—it is labelled as PIRA
How it’s measured: Doctors usually track PIRA using the Expanded Disability Status Scale (EDSS) or tests like the Timed 25-Foot Walk.
Smouldering MS: The “Why” (The Slow Burn)
Smouldering MS is the term for what’s actually happening under the bonnet.
If a relapse is a sudden bushfire that the fire brigade (steroids/meds) rushes to put out, “smouldering MS” is the slow creep of embers left behind in the undergrowth. You can’t see big flames, but the heat is still there, slowly damaging the roots and the soil.
It’s the constant, low-level ‘hiss’ of inflammation in the brain that never really goes away. It’s responsible for the brain shrinking a bit faster than it should or that brain fog that won’t budge.
If you’re female between 35 and 60 with MS, I recommend contacting a specialist GP in women’s health clinic. In my experience, hormonal changes often feel like MS. (And there are things you can do!)
Neurologist Professor Gavin Giovannoni has written extensively about smouldering MS as the ‘true MS’ on his Substack, MS Selfie.
If you’re someone who reads every single word of a book, you may remember Prof Giovanonni as the first testimonial published in the first few pages of Prof George Jelinek’s second edition of Overcoming Multiple Sclerosis.
Prof Giovannoni argues that this “silent progression” may be a core feature of MS — not a failure of treatment or imagination.
So what do you do when you’re already on a good medication and still feel worse?
Here’s what I would do. I’m not a medical professional. I’m a lived experience and research commentator.
1. Take a drug —but don’t treat everything else like it’s “alternative”
There’s a strange and unhelpful idea floating around MS spaces that you must choose:
A: drugs or B: diet and lifestyle.
Why are these treated as mutually exclusive?
If you’re on a disease-modifying therapy that works for you, that’s great. These medications may reducing relapses and inflammatory damage. I’m on Kesimpta myself, and value it highly.
But let me be clear.
Medication is not giving in to pharma-capitalism
A healthy lifestyle is not a rejection of science.
They are doing different jobs — and they work best together.
Another thing that troubles me is how often people are told, “There’s no strong evidence for a specific MS diet.”
Many people hear that and continue eating their healthy breakfast range of McDonald’s sausage and whipped butter pancakes. Deep-fried chicken and a litre of carbonated sugar water for morning tea (they’re hungry already), and some blue neurochemical Gatorade to fuel the aspirations of becoming athletic for afternoon tea. In other words, they continue eating garbage, because they think what you eat doesn’t matter.
And how does garbage food makes them feel? Tired, foggy, inflamed.
No, there is no single magic diet. (But I feel the best diet is a very healthy one you can stick to 80 percent of the time such as the Food Medicine Diet.)
But there is strong lived and emerging evidence that ultra-processed, nutrient-poor food makes many people feel worse, and that real, whole food supports energy, mood, gut health, and resilience.
What you eat matters.
If you’re on a medication and feel worse without relapses, absolutely speak to your neurologist and healthcare team. That step is essential.
But it’s not the only step.
There is so much more you can do — and this website is full of practical, sustainable ideas.
Drugs + food + sleep + movement + stress reduction are not competing philosophies.
They support each other.
This integrated approach — grounded in medicine and daily choices — is how I’ve found my way to the best life possible with MS.
Read about the best diet for MS
2. Take the Magic Pill: Exercise
Exercise is currently the closest thing we have to a lifestyle “fire extinguisher.” It doesn’t just help with fitness; it has neuroprotective effects—meaning it helps keep your brain cells alive and kicking.
The Benefit: Resistance training, in particular, has been shown in some studies to help slow down brain atrophy (the slow shrinking of the brain) and even thicken the brain’s cortex.
Aim for a combination of aerobic (walking, swimming, or “arm cycling”) and resistance training (using light weights or resistance bands).
Humans are bipedal. We’re designed to walk. If you feel your MS is getting worse, crank up the walking each day.
3. The Anti-Sizzle BBQ
Australians love a barbecue, but honestly, haven’t they read the research on red meat and alcohol? 🫠
Enjoy the barbecue but do self-cater and take a few sweet potatoes or eggplants. Or enjoy the socialising and the fancy liquids on offer.
Make a massive ‘party’ salad: 🥬
You know those annoying people at dinner parties and social luncheons who go on and on about organic whole food.Become one of those people!
Make a massive salad and throw in all those retro foods people haven’t eaten since childhood. Like carrot, corn, cucumber, capsicum, purple cabbage, cauliflower, and they’re just the Cs.
Avocado, snow peas, add radishes to some leafy greens. Definitely add nuts for the crunch. And chickpeas (strained and washed).
A good dressing of olive oil with balsamic vinegar, lemon juice, honey, seeded mustard. When you sprinkle the salad with lightly toasted sunflower seeds, pepitas and a zingy dressing, people will start having orgasms, so unused to the delight, they will be. 😂
- DO NOT INCLUDE: Processed meat like salami, cabanossi, bacon, or cubes of cheese. Some of the common folk may say you’re taking the joy out of Christmas. You can say, I’m not taking the joy out, thank you very much, I’m making it edible for human beings with MS.
These substances are known to be pro-inflammatory—they basically add fuel to the smouldering fire. To put out the fire, eat calm. Stay calm. Then whack them on the head with a clean barbecue tool.
4. Bring ‘real’ food
By “real food,” I mean not the edible food-like substances found on supermarket shelves. That fodder is goes by many names. I’ll use the generic ‘fake’ food.
In modern Western life, especially in Australia, fake food is everywhere and everyone gets fooled at least once. Don’t look it in the eyes! The packaging tells seductive lies. Just skirt around the shelves to the perimeters and don’t risk a bite.
- Vegetables
- Fruit
- Eggs
- Meat and fish are real
- Nuts and seeds
Cook from scratch. Exclude petrochemical products from your diet. (Your microbiome will thank you 😍)
Feed your nervous system nutrients it recognises.
5. Sleep hygiene
We sleep less now than we did in the 1950s when we were all scared of nuclear war.
Funny how MS, Alzeimer’s disease, and dementia are all escalating. Not saying correlation is causation, all I’m saying is that sleep is essential to clear the waste products from your brain.
Think of getting enough sleep as personal hygiene. You flush the toilet don’t you? Even though it’s the silly season, keep up the sleep hygiene. This is a foundation block.
Sleep is when your brain:
- Clears metabolic waste and cleans itself
- Repairs neurons
- Regulates immune signalling
If you have MS, getting enough sleep isn’t optional self-care — it’s how you stay ahead of the whole world as it collectively slips into sleep-deprivation-induced cognitive decline and brain atrophy.
6. Choose joy (or laughter, at least)
Exercise lifts me — but so does laughter.
Right now, I’m reading The Shovel, and it makes me laugh out loud. That joy isn’t frivolous — it’s neurological nourishment. (The ex-politician who looks like Lord Voldemort crossed with a baked potato has added a fine, loamy mound).
Joyful activities:
- Reduce stress hormones
- Improve brain plasticity
- Support emotional resilience
Not everyone loves Christmas. Not everyone has family. I get that and it’s okay.
Sometimes I pine for the old days of red wine and solitude. Alas, scribblings on my library books. Beds that need to be made four times. So great is the joy of family life, that I often remind myself that one day, this too shall pass. And so it shall.
Yes, smouldering is real. It’s the real result of a disease that refuses to stop, reverse and make us well again, even with medication. Unless we can throw all the simplest advice in the world at it. Like looking after ourselves.
But Merry Christmas and Happy New Year. There is still much joy to come.
Look after yourself.
A post shared by Cleveland Watkiss MBE (@cleveland_watkiss)
A reading of Notes for Radical Living by Tilda Swinton, which I have now seen four times.
Thank you for reading.
Much love XO
Sources
- Jelinek G. Overcoming Multiple Sclerosis. Allen & Unwin, 2016.
- Giovannoni, G. (2023). PIRA and silent progression in multiple sclerosis. MS Selfie (Substack). https://gavingiovannoni.substack.com
