Can what you eat help diminish PMR?

[Seekingasolution]

Prof Tim Spector of Zoë and U.S. Medical Director Dr Will Bulsiewicz talking about inflammation , auto immune disease, and what influences this in terms of what we eat and when we eat it.

zoe.com/learn/podcast-infla...

[HeronNS]

I think diet can affect inflammation levels. We know that some of the foodlike manufactured substances we eat these days are generally speaking bad for us in many ways. Not sure changing diet after one has developed PMR is particularly helpful for relieving pain, although we know diet is very important in managing pred side effects (keeping blood sugar levels healthy for example, and avoiding weight gain). I do wonder, however, whether those who develop PMR despite a healthy diet actually manage the disease and pred a bit more easily than others?

[Seekingasolution in reply to HeronNS]

There isn’t enough research to know whether diet can definitively help push PMR into remission once you’ve got it but I know that around the time I started it I had an incident (!) with a packet of famous butterscotch sweets, eating about 6 on an empty tummy when I had to go and lie down in the car ! I avoid sugar/ chocolate where I can these days after a repeat performance although I’ve also discovered that eg a square or two of dark chocolate after a meal is fine. This fits with Zoe’s advice to eat eg a few nuts before a carbohydrate such as porridge that would otherwise spike your blood sugar. I think we all know about avoiding UPFs now too although I think if you are living alone and cooking for one then nobody is going to eg make a sausage roll or a raspberry yoghurt from scratch ! But I have found going mainly plant based has helped me enormously. I’ve been able to taper right down ( I take 1 mg 5 or 6 days a week now ) and went skiing for the first time in 10 years this year. I read the transcript of this podcast and realised I have something still to try as I’m guilty of snacking albeit healthy snacks - an apple, some Brazil nuts etc to see if stretching the fasting time between meals makes any further difference. I read in Dr Michael Moseley’s book The Fast 800, an anecdote about a couple of people who fasted for 3 days and cured their AI disease through a sort of human system reboot ! I haven’t managed that yet ! Not for everyone either. However I thought I’d post the link as something to consider especially for those people who are desperate for help to improve. I also found being able to take a little control of my own good for my psychology. I think scientists are only now really getting to grips with the impact of the gut microbiome.

[pigeonCl-HU in reply to Seekingasolution]

Hi Seekingasolution, thank you so much for the link!

We have been following a plant based diet for years. I am a firm believer in the noxious impact of synthetic chemical in the food we consume and am trying to avoid them as much as I can; cook everything from scratch.

IMHO the importance of the microbiom cannot be trivialized; yes, 'we are what we eat': we take in junk? our body ain't gonna be happy about it. In the broader sense, food is medicine.

Again, thoughtful of you for posting this link🙂.

pigeon

[Seekingasolution in reply to pigeonCl-HU]

Glad you found it interesting. Do you have PMR too ?

[pigeonCl-HU in reply to Seekingasolution]

No I don't, but a friend of mine had it, so I know how difficult it is to cope with this at times. While food cannot 'cure' this condition (if only), it can certainly aggravate or alleviate it considerably.

pigeon

[SusyTe in reply to Seekingasolution]

I definitely find that if I eat too many carbs or sugary things one day I get a “carb hangover” the next day and my PMR pain is worse.

I drink Biotiful kefir most days to help with my gut microbiome and also eat sauerkraut and kimchi sometimes. I do think the gut plays a big part - I did a course at Grayshott Spa all about it a few years ago - fascinating.

I did the 3 day fast in the hope that it would reset my body somehow but it didn’t have any effect.

I just try to eat healthily - lots of vegetables, especially greens - cooked and in salads - veggie soups, stir-fries, kefir yoghurt, blueberries, eggs, nuts, edamame, cottage cheese, halloumi, low carb protein bread, dark chocolate as a treat. I don’t eat meat and am highly allergic to shellfish so eat mostly vegetarian with salmon, sea bass and tuna sometimes. I gave up alcohol back in 2021.

But I still have PMR - 7 and a half years now. 🤷🏻‍♀️

[Seekingasolution in reply to SusyTe]

That must be so frustrating. Has your PMR diminished at all during that time ?

[SusyTe in reply to Seekingasolution]

Yes, certainly - I couldn’t get out of bed or on and off the loo without help before I started Pred back in 2016. 20 mg gave me my life back. I am now on 4 mg and get pain in my shoulders and hips in the early hours when the cytokines shed, and up until my Pred kicks in - I take it at 8am. But then I am ok - albeit a bit creaky - until the evening, when I get exhausted. Life is liveable and I feel lucky that there is a drug that helps and also to have just reached 61 - some of my peers have not.

[Seekingasolution in reply to SusyTe]

I know what you mean - there’s plenty worse off although when I see my peers ( I’m 68 in March ) walking fluidly I do get a bit envious. I feel that one day ( I’ve had it since I was 55) it will be gone. But probably replaced by then by arthritis! But I am hopeful

[SusyTe in reply to Seekingasolution]

I know what you mean too - I think I walk a bit like a penguin, while some of my friends are so fit. Sorry to hear you have had it for so long - it does wear one down. I now have osteoarthritis as well. Hey ho - hopefully one day this thing will b*gger off!

Sending you positive thoughts and a hug xx

[Seekingasolution in reply to SusyTe]

As I got out of bed this morning and waddled stiffly to the bathroom, slightly swaying from side to side, your remark about walking like a penguin came back to me. I burst out laughing !!! Not normally something I do first thing ! So thank you for that !

[SusyTe in reply to Seekingasolution]

Glad it made you laugh! We need more laughter in our lives! 😂

[Elvied in reply to SusyTe]

I would love to hear more about the cytokines shearing please ?

[DorsetLady PMRGCAuk volunteer in reply to Elvied]

Do you mean cytokines shedding?

Hi, my understanding in as simple speak as possible -

The substances are called cytokines - and part of our normal release of different chemical during our circadian cycle - you can find plenty of info if you search online, some is quite straightforward, some not!

The primary function of cytokines is to regulate inflammation, and as such, play a vital role in regulating the immune response in health and disease. There are pro-inflammatory and anti-inflammatory cytokines.

When your immune systems is not working correctly as in PMR or other diseases then the anti-inflammatory cytokines do not work correctly and allow the pro-inflammatory ones to dominate. When this happens within the blood vessels it restricts blood and oxygen circulating around body particularly in PMR to muscles around major joints and causes pain and fatigue.

Pred is used to dampened down your overactive immune system including the cytokines, and as the normal time for them to be released in the body is around 4am.

If you take your medication a couple of hours before that (or last thing at night) it is in the system ready to act….however it you don’t take it until after that time, your body may already be stiff and painful , until the Pred has worked (1-2hrs roughly).

Some people find their dose lasts longer than 24hrs so it’s not a great problem for them, but others do struggle so adjust their timings to help

Hope that explains it.

If you what more details, have a look at this-

my.clevelandclinic.org/heal...

[Eatsfruitsandleaves in reply to DorsetLady]

I tried the link and got 404 message, not found. Thanks

[DorsetLady PMRGCAuk volunteer in reply to Eatsfruitsandleaves]

How strange - I originally coped from my iphone and it worked, but just tried on laptop and it won't... Just going to try an experient - will get back to you...

[DorsetLady PMRGCAuk volunteer in reply to Eatsfruitsandleaves]

Update -just tried this on laptop - and it works -

my.clevelandclinic.org/heal...

Somehow the last "s" of cytokines got deleted ...apologies

[Eatsfruitsandleaves in reply to DorsetLady]

Thank you for the update, the link works now.

[SusyTe in reply to Elvied]

Cytokines shed/release around 4/4.30 am and the pain wakes me up. I have been trying to find a link to explain it to you but can’t find one. If you want to start a new thread asking for a detailed explanation regarding the cytokine release process I am sure someone will find one to give to you. 😊

[DorsetLady PMRGCAuk volunteer in reply to SusyTe]

Have replied - just above your reply…

[SusyTe in reply to DorsetLady]

Thank you, O Oracle 😊

[DorsetLady PMRGCAuk volunteer in reply to SusyTe]

😊.. just a good filing system ….worthy of a ex civil servant🤣😂

[SusyTe in reply to DorsetLady]

Whilst mine is rubbish, even as a retired PA! 😂🤣

[DorsetLady PMRGCAuk volunteer in reply to SusyTe]

Yes - but mine probably started with quill and vellum… if Viking’s had those of course… 😉

[SusyTe in reply to DorsetLady]

My family have Viking ancestors too! 😃

[Seekingasolution in reply to SusyTe]

Mine seem to be Neanderthal!

[Zebedee44 in reply to SusyTe]

Me too, after seven years, and now third year meat free. I don’t miss meat, I do miss carbs, my diet is much like yours SusyTe, and I’m disappointed that nothing I have tried makes any significant difference to my PMR. Very tiresome.

[HeronNS in reply to Seekingasolution]

I became vegetarian (not vegan) I can't even remember how many years ago. Exercised, live in a city but near the ocean, (can see from window), had a nice job which gave me a sense of purpose, a great family. And I got PMR anyway.

[Seekingasolution in reply to HeronNS]

Yes there’s no rhyme or reason to how this starts in many cases. I know exactly when mine started - it was halfway down Ben Nevis ! My hips sort of locked and I had to use poles to get down off the mountain. I probably wasn’t fit enough to attempt it in the first place. Treated it like a long walk as an antidote to a failed marriage. My happily married friend woke up in agony after a weekend long tennis tournament. She was diagnosed with RA. Her doctor told her she perhaps weakened her system with excessive exercise that weekend which let a residual lurking germ into her system , he actually said possibly from tonsillitis, and trigger the illness. Who knows but both of us started with the same sort of trigger. I’d have have been better off staying home under the duvet !!

I’m trying an 80/90 % plant based diet approach ie watching my total animal protein intake as I found I could still eat too much cheese as a veggie. I’m partial to a creme brûlée too ! But after finding a slice of smoked salmon totally delicious, I began to consider where I was getting my omega 3 from and whether cutting an entire food group was the right thing either. And I still have a bit of PMR and as SusyTe remarked I too still walk like a penguin ! 🐧

[SusyTe in reply to Seekingasolution]

My PMR started after a period of intense physical and emotional stress. 🤷🏻‍♀️

Oh yes - I do love a nice bit of salmon! 😋

[Seekingasolution in reply to SusyTe]

Ditto ! X

[HeronNS in reply to Seekingasolution]

Oh my goodness. What a horrible experience. Not the sort of cleansing experience I imagine you were hoping for. Your story, however, triggered a memory of mine. I used to work in a library and one day I was walking across the room with an armload of childrens picture books, suddenly realized I was not going to make it to my destination and had to call a co-worker over to help me by taking some the load. But I think I'd had symptoms for quite a long time before that, blaming it on osteoarthritis. After pred the OA symptoms went away, and as they returned with lower dose they were not the same as before pred. For example I wondered why morning stiffness was considered a PMR symptom as I believed morning stiffness was an OA symptom. Oddly enough I do not have morning stiffness nowadays, although I definitely have OA in many joints. Possibly my healthy lifestyle did in fact keep acute PMR at bay for years and it was a series of stresses, physical and psychological, which caused the final crisis.

[Seekingasolution in reply to Seekingasolution]

And now I have the flipper to match !

Bandaged feet

[sennetta in reply to Seekingasolution]

There will never be any definitive research about diet because there's no money in it, although "Zoe" seems to making some progress in this regard. The only "definitive" research(allowed to be so called) is funded by pharmaceutical companies and it always revolves around new drugs as they have a vested interest in filling people with them. Any research not done by the pharmaceutical companies is quietly removed from public scrutiny after being publicly dissed. In the last six years, I have seen off T2 (in less than 6 months), PMR (in 2. 5 years) and most recently RA (with the added assistance of a herbalist, in less than 3 months) by changing my diet. If I had gone down the road with the plethora of scary toxic drugs I have been offered, I dread to think where I would be now. I do wonder how long this post will will be visible. Not that I am cynical or anything!

I personally find that fasting works just great at all sorts of levels.

[Seekingasolution in reply to sennetta]

Well I’m very interested to know what you did and how you changed your diet and what your herbalist recommended to reset your immune system ? I’m sure this is a very individual thing or if there was one size fits all, we’d all be cured eg I asked a little while ago if there were any vegans on here with PMR - and there are. Lots of people cutting back on red meat and sugar tho. What do you think helps ?

[PMRpro Ambassador in reply to sennetta]

"The only "definitive" research(allowed to be so called) is funded by pharmaceutical companies and it always revolves around new drugs as they have a vested interest in filling people with them"

Providing that comes with the codicil diet related then it may be true but by no means all research is funded by drug companies. The NHS itself funds a lot and there are other sources of funding for defiitive studies so your statement is not entirely true.

[camshall]

I used to take keiffer, which is a fermented milk based drink, but have not taken any since being diagnosed with pmr. Maybe I should start using it again and see what happens

[Seekingasolution in reply to camshall]

I just typed into Google ‘ Kefir and Zoē diet ‘ and a large article came up ! However in brief I attach a screenshot and think I’ll give it a go too. I note you have to be circumspect on which one you buy to include the grains?

A page on the impact of kefir on inflammation

[Highlandtiger in reply to Seekingasolution]

Kefir is really very easy to make yourself if you want to give it a try?

[Seekingasolution in reply to Highlandtiger]

I think a trip to the health food shop tomorrow is in order

[Viveka in reply to Seekingasolution]

As Highlandtiger says, it is worth making your own kefir - many more good microbes, no added sugar and I believe easily digested for added calcium. A bit fiddly to get it right until you get into the swing of things.

[Seekingasolution in reply to Viveka]

Where do you get it from ? And does it ever go off in the fridge ?

[Highlandtiger in reply to Seekingasolution]

Btw you can get good quality kefir grains online (I got some on Ebay) if your health food shop doesn’t have any.

[Seekingasolution in reply to Highlandtiger]

So once you’ve started this process can you pause it ? What happens if you go on holiday for two weeks ? I don’t suppose you can freeze them ?

[Highlandtiger in reply to Seekingasolution]

You can pause the process by putting the grains in a small jar of milk in the fridge until you’re ready to use them again. There's a lot of information online. Here’s something I just found. Basically all you need are the grains, milk, a Kilner type jar and a sieve. It's really easy. I did read somewhere you could freeze them but I’ve not tried it so don’t know if it works. The grains aren’t very expensive.

thekitchn.com/how-to-make-m...

[Viveka in reply to Seekingasolution]

I got my grains from a friend but as Highlandtiger says you can get them online, with helpful instructions, so best to Google. Once they have done their work the kefir lasts around 3 to 5 days in the fridge, I think. I make a small batch everyday cause you have to keep feeding the grains.

[HeronNS in reply to Seekingasolution]

Kefir, like other fermented foods, likely also provides one with some Vitamin K2, which is greatly lacking in th emodern Western diet. Good for bone health.

[camshall]

I still have the old kefir grains in the fridge, might try and reactivate them and get some kefir going.

[Wheelygood99]

I've been trying to make Kefir but struggling. I think our house doesn't have a consistently warm enough location to put the jar with milk and grains so it struggles to ferment.

[Seekingasolution]

I can see a use for a small hot water bottle someone bought me I dare say there’s a machine with does this if you get into in seriously