Feeling very tired

[geordiegirl1947]

Also feeling very weak n tired, on 60 mgs,steroids making me moon face n dont know what to eat to stop weight gain,feel like I'm very light headed all the time,no energy,is anyone else feeing this way,having a body scan Tuesday for bones,not happy I cant cope,dont like to ask for help,.thankyou in advance ,its nice to know there are people out there for me, 😅

[piglette]

I was told if you give up gluten and simple carbs it should stop a moon face, it worked for me, but it could be an old wives’ tale. I became a total nutrient nerd when I started pred, in fact I actually found it quite interesting. I did find that I needed to eat fewer calories than normal not to put on weight. I am not sure if everyone has this problem.

At first I hated asking people for help, due to a bad hip as well I found I had to. In fact I think a lot of people are only too glad to help, you will be surprised.

[SheffieldJane]

You are not alone here geordiegirl1947! Everything you say will chime with someone. I have PMR, so I have never been on such a high dose. I can only imagine how challenging it must be. Thank heavens it’s only temporary!

The advice is to avoid carbs this helps food cravings too. It is boring though and we are only human. Stick with us. X

[Hidden]

Theres a lot going on and you do sound fed up and overwhelmed! I dont blame you you have an illness that causes symptoms around the head and you are on 60mg. I cant imagine what that actually feels like. Hopefully someone who does will be along to share their experiences.

The bone scan involves just laying on a table/bed. I dont know if you have had one before but its not scary- please excuse me if i am teaching grandma to suck eggs.

Its not claustrophobic. Its like a C shaped machine that wraps round one side of the bed. Its only 18inches wide. It moves across your hips and checks your back. I had my 2nd one on tuesday. They may ask you to undo your bra and as long as you have no metal on your waist and back you keep your clothes on. Its a really comfy process.

Food - a low carb diet is the best way to keep control of weight. I know its harder ehen you are high doses but it will come down. Carbs include bread, pasta, potatoes, fruit, cakes, biscuits. Things with flour and sugar like pastries and pies. You can eat lots of vegetables, chicken, fish etc. You dont have to cut all the carbs. Just start by cutting out 25% of those foods for first month. Then cut another 25%. I stuck there. I have lost weight eating like that. I have the occasional chocalate. Some people have a square of two of dark chocolate. It doesnt have to be a perfect "diet". Just do what you can tben as pred comes down it will be easier. There are a few websites that provide some meal ideas. If you use the "search" thats just below your original post and type "low carb" in. Lots of ideas should come up.

I hope you can get some rest tonight. 🌻

[tangocharlie in reply to Hidden]

I've really benefitted from low carb diet and now moving on to keto. They are very similar but keto really cuts carbs down to 15% of your intake and you're encouraged instead to eat high fats, stick butter, cheese and cream on everything and moderate protein. Only a week in but doing well and a big weight loss (7lb), which is good because I had stalled for a while on low carbs and eating more fat has got me going again. Sugar is the enemy, not fats.

[SnazzyD]

Hello, this does sound very familiar for 60mg. It’s a bit much isn’t it? The hunger was unlike anything I was prepared for. Other than GCA I was normal but once on 60mg Pred, then soon after 40mg I felt like I was in a different body. It does pass, a little bit when your body becomes accustomed but mostly when the dose reduces. In the meantime, keep an open mind and try not to panic. The hunger, I stuffed my face as long as it was veg or protein. As previous replies have said, stopping all refined carbs as many of us do, so no rice, potato, bread, things made with flours, maize, pasta. I didn’t put on weight but did get the moon face etc. This is because Pred relocates fat you do have to certain places. But that goes too in time. At this stage it’s all a bit mad, you feel out of control, but need to learn so much when your brain doesn’t know what’s hit it. It will settle but at the moment you are doing the hard yards.

[Meggsy]

Hello Geordiegirl 1947 - I just wanted to add to all the good advice on diet given previously. Eat healthy fats - olive oil(I slather it over everything), avocado, nuts, oily fish, flaxseed oil, pumpkin seeds. I eats these plus low carb and lots of veges, usually stir fried, and have not put on any weight. Fats are filling. Fortunately I don’t have a sweet tooth but do have my 2 squares of 70% dark chocolate daily. Soups are good too.

I can’t imagine being on 60mg Pred, 25 was bad enough. Hang in there it will improve as you reduce your dose. Sending love 💐💐

[PinkertonCat]

On 60 mugs I was very lightheaded. I felt like my brain had been replaced by styrofoam. I avoided carbs, sugar and dairy and still got huge moonface... I am always hungry and have gained a lot of weight... huge belly, which is not uncommon. The lightheadedness does get better as you reduce. At low dose now, moo face is mostly gone, and my fatigue and lack of energy is worse than ever... but everyone is different.

[Pippah45]

Hi geordiegirl - you sound just like I felt a few short weeks ago on the start of this journey! I had just got back to a really good weight and was so happy that I seldom felt hungry and then WHAM! Very depressing to suddenly want to eat everything in sight! I had found that a low carb way works for me but I was craving sugar again! Anyway you are not alone so hang in there!

[Sho-Sho]

Snazzy has described the early days of GCA exactly as I found it - the high steroids make you feel very peculiar, dizzy, spaced out, the GCA is causing you to feel very unwell and exhausted and the moon face is horrible. It took me two or three months before I sort of took control of my life again, realized I had to eat sensibly, reducing the calories, cutting out sugar and salt as much as possible, lots of green veg, fruit, eggs, and tried to take short walks and accepted that my way of life had to change to cope with the illness - not, not easy and at times very depressing but kept reminding myself that I would eventually get better.

I do hope you begin improve soon, we are all here for you to offer help and support.

[whitefishbay]

Try not to eat any carbs if you can. Enjoy your moon face-no lines. I am down to 1mg and have lines and wrinkles seemingly overnight. 🤦🏻‍♀️

[tangocharlie in reply to whitefishbay]

Ha ha that's so true, I've lost the moon face but gained wrinkles!

[Purplecrow]

Hi Girlfriend... we could be twins with these symptoms...I am 5 years ahead of you, and want to say...things do get better!

For the short term, try to deal with the munch factor by keeping a bowl of fruit and veggie slices easily at hand. I know that does not sound as tempting as a nice cookie... but truthfully, it didnt matter what I ate, i just needed to eat something. Also try to drink lots of good tasting water, try splash of lemon, lime, or even a splash of your favorite soda in the water. It makes it easier to drink.

Tired, weak and depressed are all part of this disease. The symptoms come and go, and for me, none lasted overly long, ... but long enough.

I tried to get out in the sunshine every day, get as much sleep as the pred allowed, and took a nap...every day...! It helped make it to the evening without being worn out.

Sending you a virtual hug and reassurance that this phase will pass, and you will come out the other side!!! I promise!!

Stay with this forum...

..the best information available, is right here! Guaranteed!

Kind regards, Jerri

Diagnosed PMR 2013.

[Trevgrrl]

I have all your symptoms, too, plus pretty bad depression. I have gained lots of weight since going on prednizone, and can't seem to do the carbs thing. I like sweets and bread and my will power is zilch. It is sad, too, because I also have osteoarthrits which would be improved if I didn't weight so much. Does anybody weight as much as I do? 314 pounds. (I'm 5' 6") Oh, gosh, so embarrassing.

[Trevgrrl in reply to Trevgrrl]

weigh, I mean.

[geordiegirl1947]

I would like to thank all my friends on this site for helping me,I have so many new ideas to try,I'm looking forward to trying the simple carbs,and eating fewer calories,I will let you all know I get on,thanks,😊

[tangocharlie in reply to geordiegirl1947]

Not fewer calories, fewer carbs. You'll get there, keep positive x

[piggypink]

You are not alone. Everything you are going through I have experienced. Still waiting for my brain/bone scan results, so assuming no news is good news. Try to think positively, I find it helps, but there will be good days mixed in with the bad ones. Hope you start to feel better soon.

Sending love n hugs