Diet ? ? ?

[ChrisinNam]

Have just been reading this post. I was diagnosed October 2020, but around April last year I got one of the awful side-effects of long-term Pred use. Cushingoid appearance (confirmed by the Rheumatologist two weeks ago. You all talk about walking the dog, doing mild exercise etc. I'm lucky if I can walk to the kitchen after getting up in the morning. And the DEPRESSION!!! Yes, I'm on anti-depressants, but they're not helping very much. I LOVE walking. Now I can hardly walk at all, except very little in my garden, then have to rest for the rest of the day. Sorry for the rant. Needed to get that off my chest.

[PMRpro Ambassador]

I was labelled as Cushingoid several years ago when I was on methyl prednisolone for about 9 months because prednisolone as used in the UK is not available here. I was switched to prednisone and went on a low carb diet - and lost 35lbs over the following 18 months. That wasn't all steroid weight, some was due to inactivity during the 5 years I had PMR without any treatment.

It will go away as you reduce the pred but you shouldn't just wait and hope, you need to try to be proactive and cut carbs, maybe drastically.

[ChrisinNam in reply to PMRpro]

Many thanks, PMRpro. I really do try to cut the carbs to zero, but then the depression gets to me, and I go and buy biscuits and chocolate. Not good, as I know only too well, but comfort food does give some comfort. I have very little support locally, but wouldn't move for a fortune. My d-i-l is something of a support (five hours' drive away) as she's diabetic, and HAS to follow a diet, albeit not as strict as I have to be. She's on a "low carb" diet. I know I need to be on a "no carb" diet, and I do try, but not too successfully. And of course I'm totally addicted to chocolate . . . . .!!!

[PMRpro Ambassador in reply to ChrisinNam]

You DON'T need to be NO carb - that is very hard both physically and mentally. Choose foods you enjoy that are LOW carb and make place for treats so you don't feel deprived. When you perceive things to be forbidden - you crave them more. Plan your meals as low carb - but choose a treat and stick to it, don't just keep eating until the tub of icecream or packet of biscuits is finished

[ChrisinNam in reply to PMRpro]

That's the difficult bit, not finishing the packet etc.

[PMRpro Ambassador in reply to ChrisinNam]

For that sort of thing - you have to be strong enough not to buy them in the first place. Cake I cut into smaller pieces and freeze them! Slows down the desire a bit!

[Knip in reply to PMRpro]

No carbs would cause problems of it's own, so try not to do that. If your situation allows it, ie not catering regularly for another family member...don't buy in the the foods you are tempted to eat...eg biscuits and cakes. That should help a bit. Really feel for you, it isn't easy. ❤️

[autumnlass in reply to Knip]

I’m a real carboholic as well. Love Rich Tea Biscuits… not too bad but not good either especially eating 5 in a row!! Best not to buy them at all. I find Rose Eliots Low Carb Veggie book a godsend … lovely low carb brownies waffles and pancakes! Out of print now but on sale in World of Books I’m sure. Lovely savoury recipes too … shepherds pie ..tofu hummus (tastes like the real thing!) and many other tempting recipes. ATB .. 🌸

[Knip in reply to autumnlass]

my mouth is watering now...Shepherd's pie...yum yum! xx

[autumnlass in reply to Knip]

Rose Eliot’s Low Carb Veggie Books are great. Low Carb Shepherds Pie really good. Topping is Cauliflower Rice and cheese. It really is yum! 🌸

[Bennijax in reply to Knip]

I realised I mustn't buy the treats I used to love. They are not allowed in the house. Except for very expensive roundels of 75% dark chocolate that are too dear to nibble on often. And now I find that having come off items with added sugar (as opposed to natural sugar already in a wholefood item, eating it makes my skin itch, so there goes further temptation.

[Knip in reply to Bennijax]

My GP prescribed an antihistamine for itchy skin. Cetirizine can be bought over the counter and might be worth a try. If it's not one thing it's another, isn't it! Well done re your sugar reduction...it's not easy to cut out comfort foods! x

[Bennijax in reply to ChrisinNam]

Are you able to have more real butter, olive oil, coconut oil? these fats, taken slightly more than used to be recommended helped me adjust to gluten and a wheat free diet and now low carb, no added sugar extension to that diet.

I eat as much of these fats - and including pure organic almond butter - and I don't gain weight. I lost 10 kg initially and now weight has been stable for over a year. My energy is much better most of the time, except when flares. Oh, and I take daily oral spray supplements of Vit D and Vitamin B12, plus extra Vitamin C.

I do get fatigued some days and I can see that because of taking preds (at 8.5 starting a very slow taper to 8) for two years my muscles are not what they were. I do gentle yoga each morning and do as much local walking as I can. Often a snooze around tea time too. I'm 76 and was diagnosed with PMR in September 2019.

[SnazzyD]

Yes, my Rheumy declared me Cushingoid when I had been on 40/60mg as if he was letting me in on a secret only known to learned doctors such as himself. l thought “well thanks mate, I feel a whole lot better now you have stated what is in any information about steroids. I’ll go home feeling like c***p while you think job well done”. Talk about making an already upset individual feel worse. Of course you will be, BUT for now; it isn’t forever. Nobody tells you that you’ll feel weird, mad, wired, in slow motion, anxious, with racing mind but no concentration. So, you feel there is something wrong so you stress about feeling anxious and frankly, ‘off your head’. Then add in the beard, side burns, hair loss and face like a polished red apple, spider veins, panda eyes and a neck thick enough to rival a formula 1 driver. Not a recipe for feeling like one has one’s head above water. If you’re on chemo (had that too) you’ll get lots of understanding and sympathy, but when on steroids you feel like a mutant. Whilst this is a temporary situation normal, you can make a big difference by eating an ultra low carb diet with low salt (I don’t recommend too low salt under 7mg). I did this from the start and didn’t gain weight, though the Cushingoid look is often unavoidable. This feeling is not you, and will pass, not tomorrow, but it will pass, especially under 10mg. By the way, I have an acre of garden that I watched going to pot for three years. Normally I’d go out with my trowel and have at it for a few hours. Yes it hurts to see it laugh at me while my husband gets round to having a hack in a non- plantsman way, but the wildlife loved me for it. Sigh…..What dose are you on?

[PMRpro Ambassador in reply to SnazzyD]

Another cracking Snazzy post!!!!!

[ChrisinNam in reply to SnazzyD]

I'm currently on 6.5mg, due to reduce to 6mg on 1st May. (Half mg per six weeks as recommended by my lovely nurse in the local practice, and ratified by the Rheumy). As I walk (totter) around my garden, I see weeds, bend to pull them out, and then can't get up easily. In fact I fell into my little Acer tree the other day - from a half-kneeling position! Stupid. I shouldn't have tried to go that way, the step there is too high for me now.

[SnazzyD in reply to ChrisinNam]

Well, the good news is that 0.5mg per 6 weeks is on the more realistic side as long as your PMR is under control, but you may find you need to slow down even more as you get lower. Some people are made to go even faster. Now, another unspoken issue is once you get below 7mg you may enter another bonkers nether world of low adrenal function. I was promised feeling human and going back to work. So, your adrenal glands have not needed to work because you’ve been taking an artificial form of cortisol. Once under 7mg you are under the usual dose needed for normal daily function. This is fine as long as your adrenal function has got the memo that it needs to put in some effort to make up the difference. For some of us, this doesn’t happen, at least not on demand. So, enter the dragon of poor adrenal function often combined with having been deconditioned physically and desperate for normality. This can cause more distress when one starts to feel exhausted again, emotional, anxious, fluey and weak. It’s upsetting to find that one’s muscles aren’t up to the job and easily strained. Again, this is temporary but can be drawn out way past what feels reasonable, especially if you are told it’s all down hill. If you’re lucky your doc will pre-empt this with advice but most don’t. So there is potentially another period where you feel like you are losing the plot, when you’re not. Do read the bit about adrenal function in the FAQ’s; it’s essential knowledge. As you reduce, the body should be registering that you need more cortisol and you need to make it yourself. Until you do, it can be tiring to do a day, even a basic one. I felt heinous until about 5mg when my good days we more numerous. It’s a very individual journey and some sail through. So when you lie beneath your Acer in a crumpled heap after pulling a blade of grass, it’s a sort of normal that you get through with knowledge and self care. Do learn about it so you know what’s par for the course and what isn’t.

[York54 in reply to SnazzyD]

Snazzy D , the tonic I needed waking up this morning, Thankyou 👍👍👍👍

[pal-o-mine in reply to SnazzyD]

Oh Snazzy, you just made my day, and I haven't smiled in agreement so much in a long time. You have a way with words; do you write for a living?

[SnazzyD in reply to pal-o-mine]

😂 no I don’t, only my Christmas round robin and this.

[daisylazy in reply to SnazzyD]

You are a tonic SnazzyD.

[Sophiestree in reply to SnazzyD]

Wonderful reply.

[SheffieldJane]

Rant away ChrisinNam! We hear you and it is really hard.Do you use a walking aid of any kind?

When my PMR symptoms were bad, I was recommended Norwegian walking poles on here. I even managed rocky cliffs in Greece ( not by choice, our rented house was up there). It helps everything to get out - even a few steps at a time. Is there anyone who can go with you? When your motivation is negatively impacted by depression it is so hard to build up muscle strength and stamina. I bought a little pedal device to exercise my feet and legs. It gathers dust but might work for you, as you love walking. 🌷

[ChrisinNam in reply to SheffieldJane]

Hi, SJ. While I was in Namibia I went camping with my son and a couple of his friends. The toilet and shower were halfway up the mountain, and I had to get my son to help me every time I wanted to go. Yes, I use a walking stick, and had contemplated getting a "rollator", until I saw the prices!! I'm hoping that this situation WILL be temporary, and spending that amount of money on a temporary aid isn't in my budget. It costs a LOT to visit Namibia where half of my family (and my heart) is.

[HappyDiamonds in reply to ChrisinNam]

Dear ChrisinNam, I can relate to everything you have said. In the almost 2 years I have been treated for GCA I have gained 2 stones in weight and don't recognise my appearance at all - All the things Snazzy says. I also have OA & OP and have lost height due to spinal fractures and I was only 5stone 1lb to start with. Anyway what I wanted to tell you in the hope that it will help is that I bought loads of things, Rollator, elephant feet to raise my sofa, a grabber to reach things, walking sticks you get the idea. Then one day I had the nurse visit for my blood test and she referred me to OT and they told me they would have supplied everything I had already bought. I now have 2 Rollators, one given to me for indoors with a tray on the front, its really swish and modern. A bigger one for outdoors with a seat on and storage underneath. They also installed grab rails in my shower room and a rail by the front door. Help is available to you. I didn't have any idea about this and its the first time in my life I have received free help. Please look in to it. Also if you promise not to eat loads of chocolate and biscuits I will join you and promise to do the same. We've got this. Chin up

[Sophiestree in reply to HappyDiamonds]

Occupational therapy is an excellent idea.The hospital or GP should be able to make a referral or the Red Cross often loan out these things.

When my mother and aunt died, both disabled, we gave them most of the things we had including electric wheelchairs and walkers.

[SheffieldJane in reply to ChrisinNam]

My 4 beloved grandchildren and two daughters live in Australia, so I know exactly how you feel. These are the mountains we just have to climb. I hope your mobility problem is a temporary one.

[Bridge31]

I was just lying here thinking I really can’t face the morning routine of getting out of bed, cleaning my teeth, having a wash, getting dressed ( probably quite comical watching me trying to put on my trousers )Trying to make my hair look reasonable whilst trying not to notice the awful fatty deposits round my neck and then gingerly making my way downstairs. Hey Ho 😂😂

[Constance13 in reply to Bridge31]

But we do it, don’t we? Once actually dressed the day is there to plan what else we can do/what we can’t be botherer to do - but at least we’re dressed if anyone drops in.

[Hankb]

Hi Chris. I can relate to everything you say. I'm on 7mg a day at the moment and tapering at 0.5mg each month. Fatigue is my main issue and the lack of 'get up and go' over the past 9 months has sadly become a permanent way of life. Legs and arms becoming like match sticks but cheeks and neck puffing up although I try and eat healthy. I hope you get some relief soon. Take care

[PMRpro Ambassador in reply to Hankb]

Healthy eating alone doesn't work when on pred - cutting carbs is crucial for weight control

[Sharitone]

Dear Chrisinam, from a selfish point of view, I thought that was a wonderful post, so please rant away! I always plummet when I read posts from people who can only mange to walk 3 miles instead of their usual 5! I don't begrudge them, honest, but it does make me feel I must be doing something wrong. And as you know, if you can't walk, there's not much point in going on holiday. I expected the fatigue (how I hate that word) to improve below 10mg, but it seems not. I also tried a bit of weeding, sitting on some plastic. It was ok till I tried to stand up, couldn't, and ended up flailing around in a puddle of mud along with a good few worms. All the worse as I have wormophobia. AND I paid for it the next day!Good luck: remember you are not alone.🙂

[SnazzyD]

Yes, there’s an extra * there!Similarly I also find that I need to be much more vigilant on the weight side of things now to a greater degree than I would attribute to just ageing. So, I have had a month of slower dog walks due to visiting daughter at Uni not doing mornings well. On top of that, even though I still don’t have the beige carb bit on my plate for my three meals, a few ‘transgressions’ have added about 4lbs. By a few, I mean eating out three times and perhaps a daily extra like a couple of stolen chips, an extra square of chocolate to my usual 3, on extra glass of wine to my usual two at the weekend, twice a slice of gluten free toast for lunch due to nothing else in the house (delivery mess ups). Also, I react to salt more than I ever did so that’s not useful. I really think it’s not so much calories for me but what they are made up of. It’s tiresome.

[HeronNS]

When I was on holiday a few years ago one of my fellow travellers had a kind of walking stick which had an integrated seat which she could open up and use to rest on when need be.