Has anyone tried this book? It was recommended by my local pharmacist, a young guy that did a his university thesis on PMR. ( He also does a lot of research into CPAP machines having suffered a heart attack at age 28. It was discovered he had severe sleep apneoa). He's helped me a lot with both.
Title is "The Polymyalgia Rheumatica Diet"by Susan Parker. The preview stresses lots of "dont eats" like wheat and gluten. I like my bread but I can live without it if necessary - along with a lot of other stuff. Shame about the beer though!
Me and my story? Hit with sudden overnight, screaming agony, classic pain symptoms of PMR in August 2021. Three doctors didn't have a clue what it was. One even recommended I get a massage! I'd entered his surgery on crutches with my wife holding me up! Finally found my old doctor from years ago and he immediately put me 50mgs of Pred. It killed the pain over night after three weeks of agonising misery and worry.
I'm now down to 1.5 mgs (very quick, I know) but I read a lot about Pred and PMR. Collaborating with my GP I worked out how the cortisol and HPA axis worked. From that I knew what to expect every time I reduced the Pred. I'm 75 yo and retired and was thus able to accommodate the long afternoon naps and rest required to sleep off the fatigue attacks. PMR certainly changed my whole life style and choices. I simply will never do some of things we had planned. I've settled for "the quiet life" which is not the life I had prior to PMR. I once thrived on stress, working internationally in high stress industry. Not any more. I can't afford to even think about even simple "stress". Not everyone is this lucky.
So here I am now, a quiet gardener and woodturner, having the occasional "flare fatigue", sore neck for an hour or so, but seeing a light at the end of the tunnel. I now need to get my weight down and cut out "the bad foods". I hate diets but I'm gonna do it. I have to.
So any comments on the book? Thanks for the advice and support this forum and you guys have given me. Its worth more than 10 doctors!!
I've heard of this book , I've heard it is very US centred in terms and some of the ingredients used may not actually be available in the UK or Australia. A lot of books that state they are specific for a particular illness just say the same thing as each other just with a bit of general info on the illness itself. Sorting out your Diet For Life , rather than " dieting" is always a good idea when you have a chronic illness or just to have a healthy lifestyle.
A diet for life should not be punishing or filled with foods you don't like as it will never give you are sustainable and enjoyable change. Too hard and you end up falling off the wagon , cramming with bad stuff then feeling sickly or guilty about it.
In terms of helping your PMR or GCA you need to ask yourself a couple of things.
Are you changing your diet to get the right nutrients to help you improve your overall health and reduce symptoms?
Or , do you also need to lose some weight gained from taking medication and less activity?
Whichever answers you give the simple answer is you should only put the amount of calories into your body that you are likely to use each day to maintain your weight , or eat less calories if you want to lose weight.
A Diet for Life should fit your individual needs and taste.
It should involve eating carefully and healthily with the odd treat .
A versatile diet is one that is Mediterranean style packed full of variety and nutrients.
It isn't necessary for people to go gluten free , yeast free or lactofree unless they suffer an intolerance to these foods or they are sure they are the cause of digestive symptoms like gas , bloating , bowel issues and skin itching.
It is , however , better to reduce intake of refined sugar , cut out artificial sweeteners, processed food and ready meals , and reduce the white carbs ( white sugar , peeled potatoes , flour, rice and pasta ) to rare treats , have smaller portions of complex carbs that contain a lower glycaemic level and fibre instead ( wholegrain, wholemeal, brown or wild rice , wholemeal pasta , oats , and more complex grains and seeds).
So the bread can stay but reduce the amount you have each week and change to a healthy option.
You can also have a few roast potatoes as a treat with a Sunday lunch , or the odd small slice of cake or a pudding when you know you are eating healthy , portion controlled meals most of the week.
A little of what you fancy does you good , or keeps you on the straight and narrow.
Replace saturated fat foods with unsaturated ones . Increase healthy proteins like eggs , dairy products (either normal or dairy free ) , chicken , poultry , fish , especially oily fish and shellfish, game , lean pork and occasional lean red meat. The Aussie Christmas BBQ is safe!!!
Eat some vegetarian meal options too using beans , pulses , lentils , Quorn , buckwheat and use these often as a side instead of big piles of carb foods .
Nuts and nut butters are a good addition if you don't eat them yet.
Eat good fats like olive oil , rather than margarines, lard and hard fats , a little scraping of butter is acceptable when you need it and some cheese each week is fine.
You really need to pack in the minerals and vitamins when coping with any chronic illness as these can be depleted by the constant healing , and you can absorb less of them because of the effect of the drugs. Vitamin D , Calcium, Vitamin B 12 and Folates are very important. Other fat soluble vitamins and magnesium can help reduce symptoms and protect your skin too.
So the Adcal supplement is good , but a combined vitamin and mineral taken after the fattiest meal of the day is helpful too , additional Vitamin D , K2 and Magnesium can also be taken in a handy spray.
Omega 3 helps joints and inflammation but steer clear of Omega 6 supplements as this can promote inflammation.
Then you fill the rest of the space on the plate with lots of lovely vegetables, especially dark green vegetables, Avacado , beans, mushrooms , peppers, salads and healthy root veg. And eat some fruit like berries , banana , watermelon , citrus , melon, papaya and apples.
Most vital of all drink more fluids , Dehydration causes an increase in all sorts of symptoms and a healing body uses a lot more water than a healthy one. You can be dehydrated even when you aren't thirsty , in fact sometimes hunger pangs are confused brain signals , it needs water but you feel like you need food.
The odd lower calorie drink or occasional glass of beer can be one of your treats if you can still drink alcohol.
Green Tea , any unsweetened flavour is good for digestion and inflammation.
Eating probiotic live natural yoghurt , sweetened with a little manuka or local honey with your steroid can help protect your stomach but also makes a nice breakfast with berries, banana and nuts . The yoghurt can also make a nice base for dips when mixed with herbs , spices , tomato , Avacado etc and eaten before a meal with veg or few wholegrain snacks which can help settle your stomach and reduce hunger pangs if you are eating smaller portions.
Just keep eating simple unless your passion is cooking. PMR zaps energy so cook simple , stuff like stews , soups, salads and oven baked things that you don't have to stand over all the time and stir. The Fast 800 diet books and website have great info and recipes , if you are Type 1 diabetic you just adjust them a bit , and you don't have to join the site to get lots of info from it, plus there are tons of free writings about it via Google . The book/ with recipes itself is probably a better buy.
Diabetes UK also has a free to use website packed with information on healthy eating plus tons of recipes for different tastes , it a good resource.
Your gentle , well paced life changes with some moderate exercise and less stress will be doing you the world of good too , so well done on accepting and making those changes.
Just to say that you have been given such good advice …. all I will add that is helping me on my PMR journey is The Low Carb Vegetarian Diet by Rose Eliot! I lost 2 stone by following her diet and I find her recipes delicious. I do eat fish and a roast but very rarely.
is a link to Amazon's blurb about the other Rose Elliott low carb veggie book. If you click on the sample image to have a look inside you get a lot of her explanation - free.
Thanks PMRpro. I have that book too… bought 15 years ago! Long before PMR sprung into my life! The Low Carb Shepherds Pie is delicious as is the Tofu Falafel. And the Blueberry Waffles!!
I think the books are on the World of Books website too and MUCH cheaper!
I do the low carb topping with cauliflower rice and some grated cheese for the shepherds pie. The low carb pizza is very good too, but a tad rich! Tofu hummus sounds yuk, but it’s as good as the real thing! Tomato and cheddar soup - NO! 😂
There is acceptable low carb and non-acceptable! Sod the carbs - I only eat pizza a couple of times a year, I'm going to the pizzeria in the village and having a proper one!
Yes - never have tasted pizza as good as those in Italy.. the finest one was in a cafe in Pisa! Hope all being well to be going to Piedmont next year. My DIL has just bought a cottage there! Don’t know that area at all!
It was the first part of Italy I "met" at 21. We had camped on the south side of Lake Geneva and drove via Martigny to Aosta over the top of the St Bernard pass. Then down to Alessandria and Genoa - I can picture bits of the journey now.
Where is the cottage - I'll come and visit you!!!!
A lovely story! At the moment it’s a bit of a wreck! She bought it cheaply, but my competent son and friends will be refurbishing it! All is sound but needs stuff doing to it. She’s only just bought it so I’m not sure exactly where it is, but I’ll let you know. Her family have another house which all the siblings share so he’ll stay there while renovations takes place. It’s all quite exciting! Of course you must come and visit me - that would be great having a F2F with you! 😁. I’ll keep you posted.
That's the point isn't it .If you are going low carb to maintain your weight for life rather than because you can't eat it, it doesn't mean you can never eat a really good carb or favourite food as a rare treat.
If I'm having pizza , which isn't often , it's the best I can get , I only have a couple of small slices but I savour them. It keeps you going until the next time.
In fact , it is homemade pizza tonight , as a treat for my OH while he watches the football.
Won't be a patch on yours, but it's based on a recipe I got years back from a pizzeria in Bradford.
Topping includes a layer of good Bolognese sauce little garlic meatballs , peppers , mushroom and onion with four different cheeses.
It's one big reason why you shouldn't go totally gluten free or dairy free unless you have to for medical reasons or because you are tested as intolerant.
Not eating any gluten or lactose for a long time reduces the right bacteria and enzymes and slows the right brain signals to cope with digesting them. If you then suddenly pop in a slice of pizza or cake after eating no gluten or dairy for months you body doesn't handle it well , you can get lots of nasty symptoms which makes you believe you can't eat those things anymore , so you end up not having your odd favourite treat because you think it will always " repeat" on you.
That can get very depressing , but can influence people to make worse choices packed with just sugar , palm oil , or artificial sweeteners instead.
If you eat a little gluten or dairy it prevents that effect unless you have gone overboard on the sugar and portion size as well.
It's the same with lactose - eliminating dairy isn't a good idea unless you have galactosaemia. If it is just intolerance - DON'T have a large bowl of cereal with milk, milky tea or coffee and buy a large latte on the way to work!!
Absolutely!Once a month I go to my favourite year round ice cream cafe.
I have one small scoop with an espresso, then I go for a stroll and photo session on the beach to earn a second small scoop before I go home.
They know me and which week I'm likely to be around now , so they always make my favourite flavours that week. Kind, but it makes the choice a lot harder!
It's blooming freezing here today and we are waiting for snow so I can't see me visiting next week, unless it's for a take out eaten in the car with the heater on!
My icecream shop has taken a winter break - no warning, just there they were gone until February. What will I get for xmas? The other one is rubbish in comparison!
Oh No ! If you knew you could have treated yourself to a tub to get you through until Feb. Looks like you need an emergency food parcel of ice cream and British Cheese. Do you still have difficulty getting hold of tonic water and Swedes?
Don’t know if it was Tanqueray's or not but I tried alcohol free gin at a function recently. It was ok but ultimately I decided I’d be better off just drinking tonic on its own to be honest…
That's what I wondered - wondered if the aromatics flavour still came over. We usually drank Tanqueray but developed a taste for an Austrian gin, 1884, which has a very distinctive taste.
I checked this out for myself, as for me it is the alcohol and artificial sweeteners rather than the botanicals I have to avoid.People often don't realise that for gin it can actually be the natural botanicals or any artificial ingredients that will often be the trigger for their heart symptoms rather than the alcohol itself. So a higher end gin or blended spirit with better ingredients can often cause more problems than a budget one.
Tanqueray 0.0% and most of the better non alcoholic gins still contain the same levels of high end botanicals some of which can interact with medications .
Very importantly, most non alcoholic spirits contain at least one artificial sweeteners, Tanqueray contains 2 . So , as well as these chemicals causing their own symptom issues and effecting insulin balance they also produce a slightly chemical aftertaste.
My eldest daughter is friends with the owner of a Gin Bar in London . They tried everything and refuse to stock any non alcoholic gins on their shelves , which has to tell you something.
He does make an amazing gin flavoured non alcoholic drink though including good non diet tonic and lots of natural juices and herb infusions.
At the end of the day I don't think it's worth having the non alcohol drinks , they never taste the same and seem to make you miss the loss of your favourite tipple even more .
If you are allowed the odd alcoholic drink choose the best one you can from the favourite tipples you are still able to have and just savour the rare treat.
If you can't actually drink the alcohol go for something genuinely enjoyable with no alcohol or artificial sweeteners.
I make a nice mulled apple juice or red grape juice drink over Christmas . The hardest thing is keeping it to myself as the rest of the family suddenly give up on all the other drinks and end up stealing mine.
Find me a decent non-alcoholic anything!!!! I hate going to a pub in the UK, nothing to drink as the wine is usually disgusting, dislike beer and if I'm driving that leaves fizzy water which does get boring eventually! And the non-alc stuff tends to be SOOOO sweet. I even drink Italian espresso without sugar!
Me too , espresso that a spoon could stand up in , no sugar , love it poured over a nice ice cream though or with a square of good chocolate.You're right in your average pub the non alcoholic drink options are useless , unless you can drink fruit juices and they stock fresh squeezed ones. I'm lucky with pubs though , if I did have a drink in them I usually go for the fizzy water with fresh lime slices , or a Guinness or Pimm's when I could drink, if they served good coffee I'd have one Irish Coffee. I've been known to take my own little hip flask out with good elderflower cordial , lime or other fresh juices in it to add to the water.
If it is your " local" and you are in regularly they will order in anything to keep behind the bar for you to give more choice , for wine , beer or non alcoholic stuff , you just need to strike up a chat with the barkeep and ask.
I mostly go to places that are combos of good food and well stocked specialist bars on the very rare occasion I get to one now , there aren't many pubs in that category , usually bars , bistros , licensed cafes and hotels. Chain pubs , like chain fast food places are generally very limited in taste and options , which isn't surprising they fulfill the demand on budget and convenience.
I know a couple of nice gastro pubs in Chester though.
I’ve never tried aubergine but as I’m cutting out sugars and processed food ( mash?) until my current issue is resolved I think I should give it a go. It will be fun to find out what to do with the thing. About 48 years ago my brothers got some fresh corn on the cob in lieu of payment for helping on a farm. Here in the uk even tinned corn was a strange thing at that time and Mum had no idea how to cook them so she boiled them for an hour and we all nearly broke our teeth off trying to eat them 😝
Mash is OK if you make it from scratch! I'm very partial to aubergine but it is best when the outside is nicely browned. It is a great medium for olive oil - soaks it up like bread
I have the book and have never used any recipe from it. LOL. Have been a ovo lacto vegetarian for 40+ years - didn't stop me from getting diabetes type 2 and polymyalgia rhuematica
In my experience most of these books are a waste of money. You start off all enthusiastic but find so many ingredients aren't available where you live or when you try them, they don't fit with your cooking habits and tastes. Have a look at the reviews on the Amazon page - several very critical ones. I'm also not sure what is "groundbreaking" about it ...
There is little evidence that gluten has anything to contribute one way or the other - but cutting it out achieves a cut in carbs unless you frequent the Free-from aisles in the supermarket. A naturally gluten-free diet without substitutes for bakery probably does help. One of the things we recommend is to cut carbs drastically - especially processed foods, added sugar and a lot of fruit. That helps reduce the risks of weight gain and steroid induced diabetes. But it is easy to achieve by watching what you put on your plate and this site
provides an excellent guide to what is good or less good plus meal suggestions and recipes - but it is all free, Simply googling low carb recipes will bring you a host of such options on blogs and other websites - free for the surfing!
I'm not sure which cookery book claiming to be for PMR is pretty much identical to about a dozen other books by the same author - each of which claims to be for a different illness! Strikes me as a brilliant way of increasing your audience without doing a lot of work.
Get out your favourite cookery books/recipes and have a look as to how you can adapt them. It is easier than you think.
My own "off the top of my head" hack is to use Greek yoghurt and an egg to substitute for bechamel sauce in cauliflower cheese - A small tub of yog and one egg is about right for a single portion, beat the egg into the yog and use that as the topping over cauli/broccoli and bake it in the oven for 20min or so until set. Add cheese as you like. I use slices of courgette or aubergine to substitute for lasagne and the yog mix instead of white sauce - similar to moussaka of course but the assembly makes a difference.
Follow this link, which takes you to the University at Newcastle and the research done by the Leader in Diabetes Research funded by the charity for Diabetes .
There is also a book 'Newcastle Diet' but the link covers most of it.
I have a vague memory of ordering a PMR cookbook early in my journey and being so disappointed I returned it. When I looked up what this book looks like I'm pretty sure it's the one I briefly had. It wasn't as good a cookbook as many I already owned and certainly didn't give me any nutritional information I didn't already know.
Thanks everybody. I had the feeling that it would be mainly just good sensible eating advice for life in general. Most of the stuff you guys have recommended is a big part of my diet anyway, beans, pulses, fish, seafood, little red meat, whole grain bread, hardly any biscuits or cake (never been a big lover of either), (a packet of cream or choc biscuits will last me about 6 months!), pizza? - maybe two a year and my wife makes them, sugar -very little where it can be avoided (its in everything!), no fizzy drinks, salads, veggies, prefer fish to steak etc. But I'm no angel - I like my beer! I'm gonna miss that! Maybe try mary jane to relax? Nah, tried that 50 years ago and it just makes me nauseous with vivid screaming nightmares! 🤣 Besides, my reading on THAT subject reveals that it's not a good fit with the HPA Axis. I get groggy enough with brain fog as it is!! 😂 Look after yourselves and my tip for your PMR day is - "Don't fight that fatigued feeling". You won't win. Go to bed, draw the curtains and sleep it off for an hour or two. You'll wake up a new person to go at it for another 24 hours. Be nice to yourselves, rest and sleep. It's great medicine.
Great advice V8.One thing I forgot to mention is that if you find you have not just put on weight in more unusual places but gave gained some pounds , this does happen as one of the side effects of steroids for a lot of people.
A combo of insulin resistance causing changing fat deposits , water retention and the reduced activity can put on between 0-10lbs during your time on steroids which may not be able to shift entirely until you are in the recovery phase after you have stopped the steroids . Recovery after you reach Club Zero of muscle strength , muscle mass , energy levels and loss of medication weight gain can take 12 months , sometimes more depending on other health factors .
But you sound like you have learnt how to get that life balance and have the patience and understanding that you need to take things slowly to reach the finish line so I'm sure you will get there.
You might want to have the odd glass of red wine , and the occasional beer but much more will keep those pounds on for anyone.
Being diabetic type 2 for many years I have been low carb (vegetarian) since diagnosis - no meds. Then I developed palindromic rheumatism very similar to PMR. So my low carb diet didn't prevent this!
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