Diet and PMR

Bones, joints and muscles
1

I keep a close eye on this forum which has been my guide for the 2 years I have had PMR. Am down to 31/2 having done EileenH's reduction plan August 10th. I have been Ok with the odd paracetamol but today I am in pain, upper arms, neck shoulders, legs.

Yesterday I overdosed on sugar which I don't usually do.

My question is does sugar affect the muscles?

Have people watched their diet and seen differences?

I was SO good at the start of PMR and if people reply to this with proof diet helps I will make a real effort as can't stand this pain again!

DJ

 

2

Hmmm - not sure about this but I suspect it can. 

I can't eat wheat, haven't been able to for years without developing a really itchy rash, not immediately but a bit later and always in the same positions. Omit wheat - no problems. I do eat other grains.

Two years ago I had put on a load of weight - when I first went on pred I didn't put on a lot but the weight I had put on after PMR started because of immobility and lack of exercise rearranged itself to face and midriff. Then, when I moved here I was switched to Medrol and the weight went on big time. After less than a year I was desperate to lose weight. I was switched to a different form of pred and at the same time I really got serious about dieting. It wasn't long before I discovered I would lose weight if I was really strict and ate next to no carbs of any sort but as soon as I ate much more than green veg and salad I lost no weight. I don't eat sugar anyway - none in tea or coffee, no soft drinks of any sort, maybe half a dozen icecreams per summer (that's hard, I live in Italy), almost never cakes and even only about 1 piece of fruit a week.

I do notice a big difference in how I feel after a few days where I have pigged (by my standards at least) on carbs of any sort - any carb, spelt, polenta, not just sugar. If it has been a few days with sweet things (ice creams, desserts) I think it is probably worse.  I also notice I feel "puffy", clothes are tight and so on, a few days on my normal diet and that has all gone.

Cutting carbs of all sorts in diet will lead to the glycogen reserves in the muscles being used up and your body switches to using triglycerides to make energy - which uses up fat stores and you lose weight as a result. When you then eat carbs those glycogen stores are replenished - I wonder if that has an effect in the muscles?

I found this statement on the Harvard Family Educational site: "The bolus of blood sugar that accompanies a meal or snack of highly refined carbohydrates (white bread, white rice, French fries, sugar-laden soda, etc.) increases levels of inflammatory messengers called cytokines" - and cytokines are what cause the inflammation in PMR. I have just been reading the beginning of a series of articles on a blog about low carb diets in ankylosing spondylitis - a prof of immunology in London some years ago found ESR fell in patients on low carb diets. So without carbs their inflammatory signs fell. 

I know MrsO usually eats 3 helping of oily fish a week as well as the other anti-inflammatory foods she uses - and that if she hadn't eaten that she noticed she didn't feel as good. That's a positive effect - but I think that a negative effect is just as reasonable a concept. I haven't found real, proper medical/biochemical articles saying this yet - I shall look.

But WHY did you overdose on sugar? Were you doing something different that could have contributed?

3

" .....haven't been able to for years without developing a really itchy rash, not immediately but a bit later and always in the same positions."

have you considered if this might be dermatitis herpetiformis ?

4

I did yes rex because it did fulfill quite a few criteria. I asked for a referral to dermatology and was told to come for a skin biopsy - but noone told me I needed to eat plenty of wheat in the 2 months up to the biopsy so when I arrived and the VERY snotty dermy consultant asked where the rash was - there wasn't one. The dx of DH actually depends on the marker being found in normal skin, not in a lesion, so it never occured to me it mattered. Said dermy was very rude about wasting her time and sneered at the nurse who asked should I be given an appointment "soon" that "it wasn't cancer...". So I discussed it with the local coeliac specialist instead. At that time in the UK most of the gluten-free baked products were made with "washed wheat starch" - no gluten but still wheat and since I reacted to that and am fine eating pure rye and even spelt he felt it most likey wasn't coeliac/DH but an intolerance of something in the structure of the highly commercialised wheat grain and resulting from "leaky gut syndrome". His opinion was that if I could control it by diet that was fine - he didn't subscribe to the "not keeping to a gluten-free diet causes colon cancer" view. He believes that the genes for coeliac and colon cancer are closely associated and that is why the rate in coeliacs is high.

Occasionally there is something that I feel is worth itching for ;-) and have found that eating something just once a month is no problem. More often and I get a mild rash but nothing like it used to be when eating wheat regularly. Living in Italy makes it easy - they know what is in their food as they prepare much themselves and there is a very high rate of coeliac disease here so they don't treat you as precious when you ask. The village pizzeria makes gluten-free and other-grain pizza bases to order - no problem! The UK is a whole different kettle of fish - steak or salmon and salad is default. And often not even that because it comes ready prepared and they have no idea what is in it. At least the new EU law will help that - if anyone can manage to conform to it! 

5

Thanks for your answer.

I was at a Christmas fair and was made to sample sweet coloured macaroons stuffed with various sweet fillings.

OK I could have refused but for some reason I just couldn't stop eating them! Pred trigger?!

 I am sure what we eat does have an effect on how we are. I am not prepared to increase Pred dose but will now knock carbs and sugar for a detox.

DJ

6

Ah yes - possibly something I would have had a nibble at whatever they were made of, and macaroons should be safe for me (no wheat flour). they seem to be all the rage in the UK these days! See - you should avoid Christmas until at least December - though I gather Innsbruck has also started their Christmas markets. Bah Humbug!

No idea what I said to rex to be subject to moderation! 

7

These sweet things can be a problem which I need to learn to resist.

I love to bake....

8

I was just thinking much the same yesterday. My main hobbies were cooking and baking - had to give up baking because no one ate the things, just not a cake family really. We raised money for an exchange to Iowa by making cakes and selling them after church - could indulge my baking skills and not eat them which was fine. Only went on a few months though.

And the cooking went by the wayside when all that was left was him and me - and between us we eat less than 1 "normal" appetite! Just not worth the effort...

9

I have tried to cut out simple carbs and gluten, although I may have the odd biscuit. If I had a meringue or Eton Mess for example I reckon the PMR pain really turns itself on. Of course it may be all in my head. In fact cutting down on simple carbs seems to be good advice for anyone. I do try and eat anti inflammatory food too and have become quite a food bore. On the other hand a healthy diet has got to be good news I would have thought.

10

Eton mess - no, no good, this discussion is getting very bad for us...

Can't you think of something delish and sugar-free?

11

Perhaps we need a PMR cookbook! 

12

Interesting if your pain possibly starts with sugar also. I took 2 paracetamol which I very rarely do which really helped the pain. Am now firmly back on  trying to kick carbs and sugar and get off pred!

DJ

13

Sugar, like coffee, can place stress on the adrenal glands.  Those glands will already have been suppressed by the higher dose steroids, and on the lower doses will be trying to kick back in again with their pre-steroid production.  Food for thought?!!!

14

D J I will be interested to see if you find a difference.  

15

I have been told that coffee can cause steroid induced diabetes, I don't know how true that is. I still drink coffee but not that much any more.

16

Sugar free jelly and squirty cream! But please tell me Eileen, what can we eat which is carb free? Have tried internet but full of low carb foods but not carb free!

17

Brilliant idea ptolemy. Can you write it quickly please?!

18

Complex carbs are fine, it is the simple carbs, the cookies, the sweeties, the Christmas cake!! 

19

There is one!!  I ordered the book on Amazon.  It is called THE POLYMYALGIA RHEUMATICA DIET.  I don't think I am supposed to advertise, so I will not mention the author.  Quite a good read and healthy to follow.  Not too many sweets....:-)

20

Sorry, I should not have mentioned the title of the cook book.