change in pmr pain on awakening

oh my, what dosage did you start on 3 yrs ago, and what are you on now ? are you under rheumatologist care, and have you had any of the side affects, insomnia etc

 

so you are not eating any carbs?  No glutten free bread like the millet one?  What do you all eat I am starving.  can't eat this can't eat that, so hard and frustrating. I eat fruit and that has sugar, so its that a no no? I am off all bad sugar. Once in a white I have a carb. Like glutten free pasta, is that bad?  Still so confused...Will i ever get this.

well yes elizabeth i was exactly that way until this morning? i too have been staying off sugar carbs and salt 

Karen, do you eat potatoes?  Sweet potatoes?  Avocado?  Milk at least 2% not skim?  Full fat cheese?  Nuts and seeds if you can eat them, preferably raw not salted or "dry" roasted?  Dress salads generously with olive oil?  

You don't want to gain too quickly, either, or in a few months time you'll be singing a different tune!

Not that I'm a very good example as I'm not gaining weight either but I think it's because of all the exercise.

eat lots of swet potatoes and avacados  i thought diary is bad for us. i dont think i can eat nuts anymore with my colitis, i use olive oil for dressing  what kind of exercise do you do, i am realy bad at this.  My muscles are totally gone.  My skin is hanging. I hear that from the steroids.  How to I pump them back up.   thx

Mostly I walk.  I try to get at least 10,000 steps a day, sometimes it's a bit under, sometimes quite a lot over.  Includes all my daily activities, not just getting outside for a walk.  I use Nordic walking poles about three times a week.  Every few days I wear a weighted walking vest - this is because of osteoporosis fears.  I have been taking tai chi classes, and also carrying on with longstanding physio and yoga exercises.

I don't know how bad for us dairy really is. I don't drink glasses of milk but I do have milk in tea, and I eat yogurt and cheese, and sometimes drink kefir.  And I use butter and ghee a little bit, not a significant amount.

 Karen every so often I go on these mad diets of staying off as much carbs as I can, now I would have a slice of brown bread a day, I eat loads of fruit, 

stay of chocolate, sweets biscuits, eat mor eggs, and lots of salads, like you when I would hear on this forum people staying off carbs, I would think what do they eat???

But do feel a lot better, and after about a week on this, you don't miss the carbs😄 but then I get fed up being good, and go back on carbs again, and I'm sorry😂

 

Cheryl I have been taken ginger for over a year now, like I looked up all anti inflammatory foods,  like about 2oz of root ginger, a teaspoon of tumeric, garlic, every day, well think there doing some good, but who knows?

I also do a mixture of tumerac, ginger, lemon, pepper coconut water every day. Who knows if it  helps but cant hurt.

wow Anhaga ! you are so active, how long have you had pmr and been treated, what dose of pred are you on, and what symptons are you having, i wonder, because i am still at stage where after 9 days down to 20mg from 40 about a month ago, i had a flare up , after being on 20 for 9 days, and this flare up has lasted another 9 days, hurt morning and night, up so early with pain, only 3-4 hrs sleep, take pred early 6:30 am, takes bout 5-6 hrs after up for hurting to subside, then i,m worn out, exhausted so tired, can,t imagine walking much more than 10 min if that, let alone any other exercise right now, have you been doing this all along, even while in pain 

yes, ive been using the powdered turmeric to cook with ,, bout 1-2 tsp a day, use garlic almost every day , and lots of it, bought powdered ginger, but haven,t found a dish to use it in, always used it in stuffing at xmas ,helped with digestion, don,t know what other foods i would put it on

i have changed my diet as well, i always ate pretty healthy, but have taken away some foods and added some, i rarely have a slice of bread, potato once a week maybe,very seldom crackers, (with hummus), but lots of fruit, mainly apples, bananas, veggies, raw and cooked, green mostly, salad, kale, plain yogurt with my fruit, and lots of almonds, ( but they are high in calories just realized) and every morning, steel cut oats, i am trying to get my cholestrol down since i stopped crestor, week before being diagnosed with pmr, i think crestor triggered this disease for me, so now, watching cholestrol, sugar, bp,, etc, by having 5-6 small meals/snacks a day, with protein, fat , carb and fibre amounts that are acceptable for daily intake

so those sugars in fruit are ok for us?  i thought they were not. I eat sweet potatoes all the time, anyhting wrong with that. I was just out on cholesterol meds think I need to get off them.  Going to start with a holistic Dr. next week.  She said she will get me off these steroids that are so bad for us. I will keep you posted. So much going on now. I feel my body is falling apart. Sorry to be debbie downer.

Cheryl, make tea out of grated fresh (not powdered) ginger.  Good for the digestion and in same family as turmeric, good against inflammation.

Cheryl, you can't compare yourself to me.  I started at a much lower dose of pred and had been in very good health before that, except for PMR.  Think I'd had acute symptoms for about 14 months before diagnosis but may have had a milder version for some time before that, now that I know what the symptoms are, and how pred has helped me.  Yes, I exercised all through the undiagnosed year because I thought it was osteoarthritis and aging and I just needed to do more and I would get better.  Of course that didn't work!  I've been on pred since mid 2015, now approaching end of taper to 2.5, and I have what I call "niggles" especially as I reduce, but consider myself very fortunate when I read what others are going through and how hard it is for some to get their symptoms under control.  It has, just to put things in perspective, taken me three months and two attempts to get from 3 to 2.5!

There is NOTHING that is particularly bad for us - a sensible balanced diet including dairy and carbs is perfectly OK, IF IT DOESN'T MAKE YOU WORSE. You have to identify what doesn't suit YOU. By leaving out one thing at a time - you can't tell if you stop eating everything - and then reintroduing it/them when you realise it doesn't make a difference. I've done no dairy, no gluten, no alcohol amongst other things - none of them make any difference to me. The only thing is carbs - I gain weight. I don't refuse to eat them altogether - and that makes it all much easier to accept. No diet in the world will help if you are unhappy and hungry and taking too much out of your diet means you will develop other problems because of deficiencies. 

If you have the usual weight problem with steroids. i.e. weight gain, then carbs aren't usually good for you because they contribute to the weight gain. If you are LOSING weight then eating carbs isn't a problem other than the added sugars and empty calories we should all avoid. 

If you have muscle problems - get a referral to a physiotherapist who will teach you simple exercises to keep muscle bulk. For legs, walking is good. I did aquaaerobics - and that was with PMR and without pred. YOu just have to start at a low level and build up very slowly, knowing your limits and sticking to them and not letting people persuade you you can do this when they have no idea. We are all different.

Hi Eileen I read a report lately that, the muscle pain we experience, is actually referred pain, that pain is coming from the joints, is this the case, cause I'm confused,

as, I thought the muscle pain was lack of oxygen going to the muscle??

Depends what it is. The muscle pain in PMR doesn't come from joints - if it is referred pain it will be from nerves and that can be the case if you have myofascial pain syndrome which can make the muscles go into spasm and that in turn irritates the nearby nerves - and can cause sciatica if that is the nerve involved. You can have "joint pain" in PMR but it is synovitis and other pain can be tendonitis - they are both found in PMR.

The "claudication" pain we often develop in PMR as a result of using them too much is because of lack of oxygen and nutrients and removal of waste products - no different from the sore muscles you would get when healthy if you walked/ran/climbed stairs a lot without "training". Our muscles are just more sensitive to it all.

It is ADDED sugars that are bad for us - the sugar added to processed food of all sorts. above all to "low fat" or "gluten-free" foods to make them taste acceptable. Natural sugars are not so much a problem but too much fruit isn't good either as some fruits and root veggies have a lot of carbohydrate that turns to sugar in the body. Moderation in all things!

If you are cutting carbs to avoid weight gain then sweet potatoes have as much carbohydrate in them as ordinary potatoes. So do apples, bananas and grapes in particular - berries have less sugar.

If you have PMR no doctor, holistic or any other sort, will get you off pred without the symptoms returning until the underlying autoimmune disorder has burnt out and gone into remission. For 75% of patients that happens in something like 2 to 6 years - but it happens when it wants, no-one knows any way of influencing it.

In the over 7 years I have been on the forums and meeting hundreds of patients with PMR there has been no-one who has managed to accelerate their journey throuhg PMR. You CAN probably help things some with an antiinflammatory diet - ask FlipDover as she did one for a while I believe and it did help but it was so restrictive she struggled. MrsO swore by eating oily fish and using garlic and turmeric in cooking - but it didn't get her off pred until the GCA had burnt out.

It may help you, I hope it does. What I am sure is that it will help their bank account - at the detriment of yours!

Eileen ye don't know where I seen that, I mean you read so much and forget where you have read some of stuff, but it definitely stated that the ( PMR pain you have in your muscles is referred pain from joints )

but getting back to diet,  

I've   been on 2 oz of root ginger, tumeric, garlic, and other anti inflammatory  foods

and just when I thought it was doing good and I wanted to shout it from rooftops, I had a bad day with pain, it's so frustrating,

again this week, I've been good since Monday sticking to nearly no carbs, and today I have very little pain,

but just had a glass of wine there, cause felt I deserved it😄

There are a lot of strange ideas out there! I'm sure someone believes it is the truth!!!!

Never mind deserved it - if we gave up EVERYTHING life wouldn't be worth living - even if the pain was a bit better! 

So true Eileen hope your ok Xx

Karen, I guess I should clarify - I have cut out most GRAINS, not carbs.  If I cut out all carbs, like the sweet potatoes for example, I would be even thinner than I am and I'm already underweight.  I eat rice more than white potatoes, and also consume quite a lot of seeds, like pumpkin, nuts, etc., for their protein and their calories.  Some have high quantities of other nutrients we need, like iron for example, or magnesium.

I find I can have the occasional big bowl of rolled oats, with milk and salt, no sweetener, and I eat potatoes a bit.  Wheat is a treat, and usually makes me burp and gives me hiccups so I figure it's probably quite bad for me.  I never had these problems before pred and the major cutback of carbs when my blood sugar got too high.