For the time being stop wasting money and eat "proper" food! There is no evidence any of that makes any difference - for most of us there may be the odd thing that triggers discomfort and if you notice too much alcohol or too many cakes does it - then avoid them!
Your liver doesn't need a cleanse - it is designed to cleanse your body, that is its function, all you are cleansing is your bank account So stop the hated tablets and have a holiday until they decide what it is you have.
Are you sure it is "your age"? That's what I was told about the sweats - a good 15 years before "it" arrived. They come with autoimmune disorders and with pred.
Sit down and have a proper cup of tea - and a nice glass of something!!!!
My comment...have a seat....put your feet squarely on the ground,...and take some deep breaths.
This is your life, you get no do-overs, so find one thing positive,...and focus on it.
It sounds like others are driving your life, and you resent it a bit. ................Well, ok, whatcha gonna do about it?
i have a cabinet full of pricey remedies....which I bought, and didn't use. And guess what?! Nobody cared. I didn't get worse. And in fact, I'm better than ever!! The only ones who benefitted from much of the "remedial" concoctions were those "prescribing" and selling them...often the same person😱
If I sound a little snarky this morning...😜 Just had a wisdom tooth pulled.
Kind regards, don't forget to smell the flowers, Jerri
There must be something about wisdom teeth at the moment, they seems to be the flavour of the month!
Fortunately I had mine taken out as they came through in my teens, something about my mouth not being big enough! Always causes great amusement to all if ever I say that - can't imagine why 🤔
Hello, well that should cover it! I guess my question is what are you trying to get from it? Having worked in the health field and more recently in the area of cancer (had that myself too and now GCA) I have seen many times when a life is turned upside down with a major challenge to health. It throws up massive unbearable uncertainty and people often try to bargain with lifestyle changes (me included) because it is the obvious thing to do, "if I do this, then I'll be ok". What often happens is that focus becomes so narrow that it all stops being holistic. Cutting out foods because someone has declared them 'bad' can set up risk of nutrient deficiency or even overload. It might be worth stepping back and asking a few questions. Why is eating one type of protein and not others going to be more beneficial than a smaller amount of different types that have different properties? Eating lots of fish could build up heavy metals in the body for example. Why is one cup of tea a day or a glass of wine per week going to be the difference between getting better and not?
I'd say your best bet is nurture your body and not try to fix it by beating it into submission with an arbitrary cocktail of things that you actually have no idea if they'll work well or badly together. Yes there is research behind some of them but really, nurture yourself kindly. That may actually and perversely mean taking Pred at some point (if it is PMR) so harmful inflammation can be held at bay while you heal yourself holistically.
Brilliant response. In my 6 weeks of trying to accept PMR I have done exactly what you described. Since one of the only thing I can control is diet, I have approached it in a tenacious way. I started with low carb no sugar, then added full fat dairy, now considering plant based diet. Kate Gilbert mentioned pulses, which as an American, I had to translate. So beans are the "flavor" of the day. Who knows what will change tomorrow! I have been eating as much organic fruits and vegetables as I find at good prices. I made freekeh, other unusual sprouted grains and will be buying Ezekiel bread today. As I step back, I see the insanity of this.
I still have moderate to worse than moderate bilateral arm pain on 25 mg Pred. My ESR is 39 CRP 39 which is much better.I wake up stiff and it gets somewhat better with movement, I do one morning activity...walk, Zumba (40 mins) and after lunch I'm on my bed. I maintain a healthy attitude by reading, cooking and writing in a gratitude journal.
Really better after a good rant! Thanks for listening!
I think maybe it would be worth considering leaving the zumba FOR THE MOMENT - 40 minutes of doing anything in early PMR (and that is where you are) is too much and that is why you are having to retreat to bed in the afternoons. "I do ONE morning activity" - when I was in school a walk plus zumba would have been registered as TWO!
Try half the zumba class perhaps. I somehow don't get the impression that zumba comes low level... I did aquafit - the water helps but it also increases the effect (everything takes 7 times as much effort in water) so I did the class at MY level and at first using no woggles or dumbbells. One lady in the class with CFS did half the class at first - and eventually was able to stay in longer and longer.
I got bicep pain for quite a long time if I did anything using my arms above about waist level. I couldn't do anything above shoulder level - no washing windows for example, even rolling pastry made my arms ache more. It is the repetitive nature of the activity that is the biggest problem - even waving your arms around without doing anything can hurt.
Good idea! I will try water aerobics next week. I got tendinitis in my wrist from lifting my old, 10 pound blind, arthritic dog. Doc put me in a full split for 10 days. Also, I'm icing. It is much better since I'm carrying Joey in the crook of my arms.
I will follow your advice which has been perfect so far. It is hard to know if I'm babying myself with the long afternoon rest. I feel it is necessary now. My sleep is not great. Bed at 9, wake up at 3:30 for the day. Pred at 5:00 am. Can't sleep during the day.
An hour maybe? Possibly less - you'll have to find out what works best for you.
When you are doing anything - break it up into smaller bites. Do it for 5-10 minutes - depending on what it is and how it is using muscles. Then rest - which doesn't always mean doing nothing, it means using different muscles. I used to stand and iron for 5-10 mins. Then I did computer things for about the same, then did a bit more ironing or washing up. Anything I could do sitting I did sitting - or perched on a high stool.
But remember - almost everything we do, including reading a book, involves our arms and that could well be why biceps seem to be a bad spot. But walking doesn't - so you could take some of your rest as a walk, even just round the block. Very little has to be all done in one sustained action - a change is as good as a rest! And I had a pillow on my knees to rest my book on rather than holding it. And an e-reader is a wonder - you don't even have to turn the page!! But the important thing is to rest BEFORE you hit the fatigue buffers - and all in all you will have more of the day to enjoy.
Thanks. I certainly would not have figured that out on my own. Today I will def try short intervals of activity then rest?
I still have bilateral arm pain about 7 or 8...scale from 1-10. Some days it's only a 4. Sometimes it gets better for a few hours during the day but every day about an hour before 5:00 pm Pred dose (10 mg) pain gets bad again. Last night Pred barely helped. Not sure how to adjust my activities to help the pain. 25mg total Pred.
Amazing suggestion re. taking Pred an hr. and a half before pain. Not only did I have less pain, I slept until 1:30 am, got up and had oatmeal, then immediately back to sleep until 5:00 am Pred dose. First time I had decent amount of sleep in 6 weeks.
You are def the PMR Pro! Couldn't take this journey without you and all my friends! Thanks to all who ease the pain and make me smile.
Cdn't agree more PMRpro re pacing, resting etc! Mine morphed into RA and I still swim / gentle pool exercise [ aqua too demanding now] and siesta. I did an elimination diet and found that dairy was dicey 4me. Have reduced wheat n meat but grassfed lamb ok, also 2/7 veg days help. Booze - now n then, red wine in water [ 40/60] buthave discovered ginger beer, artichokes for liver cleanse, gram flour and an automatic car for ease. Good luck to all
My little bit of control is not gaining weight on Pred, though I can't do much about the shape change, chipmunk face and spindly limbs. This means I deny myself carbs like pasta, bread, sugar and starchy things. The rest is all moderation, good nutrition, variety and enjoyment - I love a good feed.
Regarding exercise, I couldn't do what you do and I don't even have the PMR bit! My muscles are too weak due to Pred which also makes them much more prone to injury. I know what it is like to have been fit and active and then face the fact that one has to behave like a convalescing invalid.
Thanks for the reality check! Yes, we are like convalescing invalids but I am trying to do as much as possible to find the balance between moving and resting. I didn't realize Pred makes muscles prone to injury. I have veins sticking out of my arms, slight bruises under my eyes and interrupted sleep due to Pred. The way I feel varies from day to day. Hopefully, this will become more consistent. 2 weeks on present 25 mg dose. Sometimes I think I need more but I just rest and wait for a better day.
No, I didn't sign up for this! Even spending years meeting people on steroids, I had no idea they were having this much fun! Nobody said.
It wasn't until about 20 mg that I stopped thinking I had way more energy to spend than I had. This is the trouble, everyone says, "Rest, Take it easy" but the Pred says, "Keep moving!". This is fuelled by the feeling of not wanting to be beaten; a rubbish cocktail. While you are not sleeping well, really take care. I found that once my sleep got longer as the dose lowered, I felt so much better. Even if you can't sleep during the day, try being horizontal, it's still rest. Making friends with Pred is a necessity in my view and also one's body which is doing its best to cope. Four and a half months down the line I still am not reconciled with the fact that I could run 5k before and now I think it is an achievement to walk half that. However, I know I mustn't push it because if I do I get kickback.
5K is impressive. My son is a marathon runner. He runs all over the world...Paris, NY, Switzerland...I worry about his 40 yr. old knees. He thinks he's invincible! So did his momma! We all learn when we have to slow down and adjust to life's challenges. 15 mins. Until Pred time. Yeah! Maybe arm pain will diminish.
I think in Kate Gilbert's book she does mention gluten as not being great for PMR/GCA - cutting out sugar is more healthy. I take lots of vitamins specially calcium and d ...I have lactose and now Fructose malabsorption... so feel a healthy diet plus vitamins is important. Great if you can eat everything... I am very jealous!
I think for most people gluten doesn't make any difference - but everyone is different and it may make a difference to you. I was eating gluten-free when my PMR happened - it didn't make the slightest difference. Gluten isn't my problem, it is wheat I'm allergic to something in the starch structure. On the other hand - both highly refined carbs and sugar are proinflammatory.
I have osteoporosis, don't absorb calcium tablets and have been eating full fat yogurt, cheese, cottage cheese and milk in coffee and oatmeal. Pred split 15 mg and 10 mg for 2 weeks. Markers are better ESR 39 CRP 14. Bilateral arm pain returned Thursday and Friday after massage on Wed. (which felt great). Concerned about dairy and inflammation. Considering a plant based diet. Your thoughts, please.
You won't get a lot of calcium from a plant-based diet! I really don't think that dairy is necessarily a demon in the inflammation stakes - but as I keep saying, everyone is different and the only way to find out is to try. But it is all a balance and if you need the dairy for calcium you need the dairy for calcium - nothing will alter that.
Personally I feel a plant based diet should only be used if recommended for such things as high blood pressure, cardiac problems or obesity, in my opinion it is not a long term solution as the body does need a variety of nutrients. If you read some books such as Gut, they are advocating lots of different foods to get our gut flora more varied. It does seem a lot more interest is being taken in this area nowadays. I had someone who worked for me who lived on a plant based diet for religious reasons, she was always ill even during the good days, which really put me off the idea for any length of time.
Thanks for the good information. I think I simply want to help myself feel better. I eat a good bit of dairy for osteoporosis and read lots of articles re. dairy causing inflammation. Not sure I can eat 10 tons of broccoli to get daily calcium requirement!
Love food shopping. Today I bought leeks, organic cabbage, organic spinach and arugula and a big bag of kale. Also bought chocolate almond milk, veggie burgers and lots of other stuff I never bought in my life! During my afternoon rest periods I'll search for recipes. This is my new activity.
Hi Sandy, when I was diagnosed with PMR I became a nutrition nerd. In fact I have found it really interesting and have been reading books on foods and guts. I am currently reading one on the genome by a geneticist called Rutherford. Apparently originally, thousands of years ago, we all became lactose intolerant once we went off the mother's milk, but this changed in Europe particularly and now around only seventy five per cent of the world is lactose intolerant. Which I suppose is quite a lot. Good luck with your new foods!
Saw a movie on Netflix last night that freaked me out...What The Health. It really made eating meat, fish, chicken and dairy whether organic or not, really horrible for humans. It was disgusting and showed people who were really sick taking lots of pills magically healthy when they went on a plant based diet. They made cheese seem as addictive as heroin! I got over my fear fast and ate yogurt, had a cheese omelette, milk in my coffee and ate turkey and veggies for dinner.
Glad you are nutrition nerd. I'm studying but picking and choosing what I do.
Hi Sandy, sounds like What the Health is making money for some supplement manufacturer!! Probably not actually giving decent nutrition in return. I suppose decent food is not a good idea when you are trying to sell supplements!
I thought of that too. But no supplements were mentioned. My take away was everything in moderation. I did buy more interesting vegetables, plus tofu, coconut creamer for coffee. But I will be eating air chilled chicken, egg white omelettes with cheese, cottage and yogurt.
The challenge with this illness is the unknown...how much activity, how much rest, on and on. Balance is the key and I'm merely striving towards that.
I understand that most people can tolerate lactose in moderate amounts and even when they cut dairy for that reason should continue to have small amounts or it gets worse and then, when faced by an accidental ingestion it is very unpleasant.
What has possibly happened is that where cereals have replaced less-milk-requiring breakfasts and the fashion for skinny lattes (and other such bizarre offers) has led to people ingesting large amounts of milk in a short time as they rush a bowl of cereal for breakfast and pick up and enormous coffee-to-go on the way to work. And at coffee time etc etc.
And the coffee-to-go places encourage buying stuff made with strange forms of "milk" as they can charge far more.
Good points. Just tried chocolate Almond milk and vanilla coconut milk coffee creamer. I love the full fat yogurt and cottage cheese. Really tastier! Full fat cheese is better too!
Just followed your good advice...20 mins of Zumba at 10:00 am. Not too strenuous...all women 50 and older. Rested this afternoon on my bed for an hour. Got up and did a walk around the block. Got my old dog a stroller so she liked it and so did I. Feel like less of an invalid with my new program. Also took second dose of Pred an hour and a half earlier before the pain starts. Hope my early morning is not horrible. Pain at 3:30 am in arms is terrible. Get up, walk around, get some relief and wait for 5:00 am dose. Am I a drug addict? Ha! Ha!
And on top of that, to glutenfree products often is added more sugar fat or other additives so take care what you choose ( observation of the person working volunteerly in a health food shop, that's me)
They really are calorie dense with a load of junk in them - so how anyone can imagine eating gluten-free is healthy and will aid weight loss if they frequent the Free-from aisle is a mystery to me!!!
I make gram flour crackers with a variety of spices and lots of chilli. take 15 mins and are delish and lowish carb treat. lots recipes on web but I literally chuck in what I fancy.
Thanks for the advice folks... the whole restrictive diet doesn't seem to make a difference, so will take a more relaxed approach and try and squeeze what fun out of life that I can
Hi there I too buy gifts for my PMR as I like to call all my lotions and potions! I do feel better but I think it's placebo! I feel worse when I drink red wine but that is normally the day after so think I may be drinking too much I was 51 when I was diagnosed, I am 52 now and with a fair wind I hope to be off steroids by 53 but I know I am not in control and have accepted that! I would say work out what makes you feel good and do it 😉
Hope springs eternal I know - but don't get disappointed if it doesn't happen! The long established members of the forums have had their work cut out in the past picking up the pieces after doctors promised patients PMR goes away quickly - and then made them feel failures when they struggled to reduce at all with unrealistic reduction plans and then couldn't get off pred without a return of symptoms.
Hi. I'm definitely on the side of healthy eating and even a few supplements...just don't become obsessive about it and allow yourself the occasional treat. It seems logical when we are taking Pred and maybe other medications alongside, to reduce the liver's workload by eating healthily has got to be a good thing. Loads of fruit and veg, not much added sugar and simple tasty healthy meals...what's not to like? And makes total sense. And that feeling that we are helping ourselves, have even a small measure of control over our illness and our future health has got to be helpful when the body is in trouble. Moderation! Good luck.
Agree with everything you say, Judy. Just eaten some beautiful Herefordshire cherries from ALDI - they were dark red inside and out! Life is just a bowl of........!
Good advice! I totally agree. Food choices are all we can control until we reach a balance of activity level, rest and Pred. It is a process that requires flexibility and the ability to live without expectations.
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So stop the hated tablets and have a holiday until they decide what it is you have. 
Not sure what to do
Not sure what to do!
Where do I go from here?
Not sure what's happening to me
In the words of the legendary Evita, so where do we go from here?
