Hope those of you who wish to celebrate around this time of year are having a great time !!
On a contingent subject - the ability to have a 'great time' I can report - 'database of one' - something I generally am wary of - being a teeny bit 'scientific' myself - that I am feeling LOTS better !! I can only ascribe this (so far that is) to one thing - that over the last month I have more or less profoundly reduced the sugars/carbs in my diet.
Although I started doing this a bit over a month ago and now can say I have not only lost almost 10 pounds but I am 'WAKING UP' !!!! NOT JOKING - this is EXACTLY how it has felt over the last 4 weeks - just like I am 'waking up' - from what is starting in retrospect to have been like a 'bad dream'. I have been looking in vain for such a descriptor and now I realise for me this is it - I am 'awake' again !!!
Everyone with or without PMR/GCA and/or other diseases can certainly relate to the feeling of semi-consciousness (at worst) or 'drowsiness' or 'brain fog' at 'best' at some point in their lives. With PMR/GCA I often found it impossible to 'snap out of' this feeling - this haze - fog - 'blurriness' - whatever you'd call it - and just get reasonably 'alert' !! Given that this state of mind is often or even mostly associated with fatigue and physical exhaustion as well I would find myself frequently not feeling much except THAT - but lately what a big change - my eyes are actually OPEN !!
I have 'whinged' here before that i suffered a lot from droopy eyelids - but they weren't consistently so - just most often when I had a bout of fatigue, exhaustion or 'sleepiness' my eyelids would half close. My optician said 'Ptosis' and said I could get them lifted if necessary on the public health as eyesight can be affected - BUT now they are wide open again all on their own !
Don't wish to ramble and bore BUT I am thinking more and more this very low sugar and higher (good) fats diet is doing wonders for me - almost as good as that first 'hit' of Pred - but a bit slower to 'take off'. I have much more 'available' energy, I am sleeping well and feeling stronger ... so this looks like it will need to be a real 'lifestyle' change for me and I hope I am up to it - but the rewards so far seem pretty good and I REALLY feel like I am 'getting MUCH better' !!!!
Best wishes to all
Rimmy
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Rimmy
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Fantastic to hear you are so much better Rimmy. This forum talks a lot about the benefit of a low carb/sugar diet to cope with PMR and it certainly works. Well done you.
I have often wondered if my relative freedom from most of the complaints I hear on the forums has anything to do with the fact I eat almost no processed carbs - they really are a treat if I do and just once (except gelato from my favourite shop that makes its own proper ice and even then that is only a single scoop)
This is interesting isn't it - as Mary63 also mentions below - I am wondering if there is any research around but I guess in relation to PMR/GCA that would need to be quite 'specific' There may however be quite a lot of 'evidence' from us lot here that we tend to do better overall on low carb diets in several more ways than just in relation to weight control ...!?
I think that is true - part may be the fact it helps some people regain a sense of control but the impression I have got over the last 6 years is that it does make a significant difference. Only anecdotally though - suppose it is something to ask sometime.
There are lots of symptoms which many complain of on this forum (brain fog especially) which I never get. I eat low carb, high fat nearly all the time I am so glad you are feeling much better Rimmy. Well done. It’s not easy making a dietary/lifestyle change.
I am also thinking and it is well known that eating low carbs helps stabilise blood sugars so you don't get as much of the 'spiking' which can leave you at lower points feeling pretty awful. This may not be the whole picture of course - we are still taking Pred which can muck things up but low carbs are associated with reduction in inflammation generally.
Great to hear you are doing so well Rimmy. Another reason to try to change and stick to this low carb plan. I know exactly what you mean about the brain fog. Reading this will inspire many of us to give it a good go. When you read about how it has affected someone personally, it does sound great. Well done. I'm definitely going to give it a serious go.
Great !! - If you could do that Hollyseden I think you will be as surprised as I am - I thought it all sounded a bit 'extreme' but I thought I'd try it. After the first week I wasn't hungry at all (true) and I started to 'wake up' quite fast ... Even without the weight loss it would be well worth it for the alertness alone !!!
I'm glad you're feeling so much better! I agree re the carbs - I reduced mine drastically and felt so much better for it. I'm no longer on pred and my carb intake has increased a bit, but it's still less than pre-PMR and I don't miss it at all. In fact, if I eat too much in the way of carbs I feel weighed down and stodgy!
I had a similar experience. I gave up all added sugar and all white carbs (apart from an occasional potato) last October and for 3 months felt much better. Things have declined a bit since then but I still feel much better than I did before October.
Thanks to all of you who have been so kind and 'pleased' for me - WHAT A GREAT EMPATHIC BUNCH YOU ARE !!! - I really hope some others here can get some great results too out of my 'small' but for me BIG 'discovery' ....
This is wonderful Rimmy and inspiring! I hoped it would be like that. I am happy for you. Currently feeling a bit of a party pooper in a shared family home with 7 adults and 4 children all of whom I am directly or indirectly responsible for bringing into the world and their partners. Thoroughly wiped out by a 6 am Easter egg hiding for the great hunt, in the massive grounds of a beautiful rural property outside Bellingen NSW. Keep creeping away to lie on my bed under a fan to the sounds of guitars, singing, shrieking and laughing. I love being near it but can only manage short bursts of it. It’s like being in a bubble this disease! I long for the awakening - definitely lost weight and appetite at 5 mgs. Easier to eat healthy in this part of Australia.
Sounds like 'fun' if a bit overwhelming !! My sister once lived in Bellingen many years ago when she temporarily left NZ - i recall writing her 'real' letters and cards there !!
Loving your lifestyle there , with all the music and commotion just pretend you are acting like " Music Festival Mum" , sitting on a lounger with your eyes closed listening to the World go by is the fashion with the Glastonbury set, so happy to hear you are surviving across the planet, hugs , Bee xx
I am so glad that you have found a key Rimmy.. To have relief is wonderful. I am currently struggling after a failed reduction and took an extra 5 this am to see if it would help my hips. My brain doesn't work... Maybe I need to try yet another dietary change... After Easter lunch... sigh...
Thank you for your post, Rimmy. I've had similar feelings of clarity and alertness since starting a low to no carb diet a year and a half ago to lose the 60 lbs I gained on 16 years of pred (for non-PMR conditions). Pain does, however, sometimes muddy the waters, or rather cloud my thinking. All the best. Nice that yours is not a pred high.
Thanks Joaclp - and very well done what a wonderful weight loss - I am sure must feel like a whole new person and it has been well worth the consistent effort obviously. Yes I am sure pain can do that to anyone - and i am sorry if you experience that regularly. I guess i am fortunate as currently don't have much at all - and so no 'interruptions' to my 'clarity' for a while now. And i'm sure happy it isn't a Pred 'high' - they were 'something else' .....
I too cut down sugar, and after a fortnight, felt so much better. Would you please give some examples of foods and meals you have for low carb ideas please? Thanks, Sue
I can't expand on that - but what i do to make life easier for myself and my partner is about every 3 days or so i make a huge container of raw vegetable salad - cabbage, onion, capsicums red & green, fresh garlic, small amounts of grated carrot and apple (take it easy with these two as a bit 'carby') any greens like spinach, kale, sprouts, celery, cauliflower, herbs like coriander (I love) or oregano, chives, spring onions - whatever takes your fancy - all finely or at least not too coarsely chopped, lemon or lime juice - I like plenty, sesame oil and olive oil - a decent slug of both - or avocado and/or other 'nut' oils, chillies or unsweetened chillies crushed if you like. Give it all a good toss and it is best after a few hours. We eat this happily for about 3 days or so for dinner- me with protein like fish or chicken or eggs. If there is any left after this I stir fry it. It IS a 'big deal' doing all that chopping and makes a mess so not doing it daily is good. Other days I have boiled or stir fried veg and similar protein - including eggs as i don't eat red meat or pork at all. For breakfast I usually have an egg fried up as a small fritata with a few veg or a half avocado with my mayonnaise. In between i drink coffee - I am a total 'addict' and wont be giving that up any time soon. I use a dash of cream and a little full cream milk - I LOVE that. All this is just 'me' but you will see lots of great stuff in the recipe section of this site I am sure !!
Thank you so much for your prompt reply and taking the time to write so much, that was very kind of you. I think it’s time to be more pro active with this condition. I already exercise a lot but think the diet plays an even bigger part. I will definitely be making a big salad dish like yours to last a few days. Thanks again, and happy eating. Oh, what about alcohol? Slimline g and t is what I’m thinking, but a dry white wine should be okay too? I could give up coffee, but alcohol? Not so sure! 😂 Sue
I have read a small/moderate amount of dry wine(s) is fine. I have had a couple of glasses recently it didn't alter anything - i suppose it is relative to what you are used to ...
I, too, occasionally have my glass (es) of wine. There is, surprising me, much less sugar in dry wines than I had thought. When shopping, I check every can/package for sugar content. Most of my meals are from organic vegetables and fruit. I have come to believe that diet affects how quickly we can taper from that nasty prednisone. At 2.5mg per day, I still feel very fatigued in the afternoons, but I am persevering. Interests in things other than myself helps. Three days ago a puppy/young dog decided my house was its safe place. I've been tying to find its owner, but afraid it may have been dumped. Concerning myself with her welfare and getting my dog Lily used to her has kept me busy and not having time to think so much about myself.
Go for it patriciawhite !!- I am not a 'snake oil' salesperson but I think you'll find yourself after a week or two feeling MUCH more energetic and much 'better'. It is not an immediate 'fix' but I have only been at it for a little over a month and it is a BIG contrast for me. The hardest bit is the beginning - but after a few days you'll be 'sailing' ... I just put up a link above to the diet doctor website re low carbs which you might also find helpful !
Good for you !!!! I've been afraid, as a newcomer, that my constant preaching about diet has become tiresome. However, you have just proved the point, that the easiest thing to "fix'" is what we eat. I do believe there is a lot of truth in the saying, "we are what we eat."
I’ve been on Keto for 3 weeks now. Lost a stone in weight, back pain has completely stopped and yes I feel as if I am awake for the first time in a year. Interesting.
Low high carbs / low sugar , gluten free if you can cope with it and no processed foods does really work for all of us to keep healthy.
Not just those with PMR/ GCA or other Chronic illness but for the " Normals" too!
I have been eating like that since first becoming ill years ago with initially gastric / gynae issues and it made a huge difference to the symptoms I was suffering.
The addition of probiotic yoghurt , turmeric , garlic , Omega 3 and good quality honey also helped with the joint pain , inflammation , IBS, and kept me off the PPIs.
I have the odd indulgences like we all do on holidays and certain times of year , but I do feel it when I eat it. Not just because my body has forgotten how to eat these things , but because they do really make a difference to the inflammation and bloating that add to the pain.
I know , with my other issues , that brain fog won't be cured by changing my diet ( nothing is ever " cured" with food) but it does reduce the impact and severity that I suffer things.
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Waking in the night. 
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