Posts Tagged ‘Diet’

I don’t want to get too excited, but I have noticed a definite improvement in my pain levels and joint mobility since my Infliximab infusion on Wednesday. As I mentioned before though, I can’t say that this is down to the Infliximab just yet, since I had a big dose of IV steroid at the same time. Saying that, I’ve had plenty of high dose steroids in one way or the other throughout this flare and I don’t think I’ve noticed such a difference before, so… fingers crossed, eek.

Steroids can be wonderful at times, especially for treating acute inflammation; if only they didn’t come with the long list of side effects! Now, it’s not by any means the most serious of these side effects, but the thing that is frustrating me right now is a massive case of the steroid munchies. Anyone who has been on high doses of steroid will know what I mean by this – it’s a constant feeling of being extremely hungry, to the point where you have the gnawing pain in your stomach and feel sick if you let it carry on too long. You want to eat everything and when you are not eating, you are thinking about what is next on the menu; you crave all the wrong things – chocolate, cakes, burgers, fried chicken, pizza, pies, cheese and creamy things… (I’m going to stop before I do a Homer drool) – tasty, but not good for you in the long run. What’s even worse, is that you never, ever ever feel full. I could just eat and eat.

Weight gain is already one of the most common side effects of taking steroids, but most of this is due to water retention in specific areas, which (in my experience) is easily reversible; as you reduce the dosage, you pee more and the weight and added inches drop off. The problem with having this huge appetite associated with the ‘steroid munchies’, is that it is so very easy to over-eat; it’s difficult not to really. With over-eating comes even more weight gain, but this time it is ‘fat weight’ and this will be much harder to shift when you finally reduce the steroids. And I’m not just taking this into account for vanity reasons, but for health reasons too – we don’t need the extra strain on our joints or for weight problems to prevent us from exercising/rehabilitation in the longterm.

I was feeling pretty miserable by this conundrum and the constant hunger gnawing away at me. It’s funny at first when people joke about you eating anything that’s not nailed down plus, as a huge food-lover anyway, it’s nice to tuck and enjoy your meals and treats; but I didn’t want it to get out of control. I decided that the best thing to do was to look into foods that were very filling and that had some nutritional value to them too, instead of wolfing down crisps, biscuits and cakes whenever I had the urge. I also gave myself set times to eat snacks, little and often – breakfast at 8.30am, a snack at 11am, lunch at 1.30pm, snack at 3-4pm and then our evening meal between 6 -7pm, drinking plenty of water and the occasional milky drink in between. (Did you know that very often thirst can be mistaken for hunger?). I was hoping that this would mean I could feel fuller for longer and nip those cravings in the bud.

Some of the foods I found were:

  • Porridge and oat-based cereals, mixed with dried fruit and nuts.
  • Porridge, banana and honey to sweeten if needed.
  • Banana and Natural yoghurt, with honey and/or nuts if needed.
  • Low fat Rice pudding, with a spoonful of jam or fruit conserve.
  • Dried fruit and nut mixes.
  • Dried apricots, prunes, dates and figs (can also add these to yoghurt)
  • Ryvita-type crackers with pate (tuna is my favourite), low fat cream cheese or humous dips.
  • Carrot, Cucumber, Celery with low fat dip.
  • Apple and Cheese.
  • Cheese or cream cheese with wholemeal crackers.
  • Rocket, walnut and apple salad.
  • Couscous and tuna.
  • Flapjacks, preferably with seeds or fruits rather than chocolate/yoghurt topping but hey, treats are still okay.
  • Fig rolls – not necessarily healthy but I’ve developed a ‘thing’ for them 😛

If anyone has any other suggestions, please feel free to share!

My first Graze box

For people reading in the UK, I would also like to recommend a company called Graze, who send  out healthy snack boxes to you through the post, with items ranging from breads, flapjacks, mixed fruit, nuts, seeds, olives, teas, chutneys… well, it’s probably better if you take a look. I had my first box delivered today and am really impressed – you get four different punnets of snacks, each one healthy but tasty and large enough to take the edge off the munchies – it took me an hour of picking to get through one.  I’ve had half of mine today and will have half tomorrow, as I’m due another box on Thursday; but you could quite easily order a box every 4 days or so and have one of the punnets each day.

Another thing I have found useful is a Blackberry app that keeps track of your calorie intake. You do this by entering all of your foods and snacks into it, searching by name / brand etc. The app has a record of calorie and nutritional values for a huge amount of foods and so quickly calculates how much you are eating. It’s also a good way of finding out what you may need to eat more or less of – for instance, I noticed that because of the dried fruit I was eating, I was recording a high sugar level and so need to balance this out by swapping some fruit with the more savoury choices above. The app I’m using is called ‘MyFitnessPal’ but there are others too and even better, they’re free. For those who don’t use apps, there are websites that do exactly the same thing too – the one I’m most familiar with is LiveStrong’s The Daily Plate.

With all of these things in place, I feel I am finally conquering the Steroid Munchies and can at least make sure that I keep my food intake within reason. Yes, I still get the occasional craving and I haven’t totally banished the treats (that would just be silly) but I am more in control and feel like things aren’t going to get out of hand without me even realising.

Everything in moderation as my Mum always says!


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Anti-Inflammatory Diet

I was going to post an article about the benefits of an anti-inflammatory diet that limits the number of acidic foods eaten… but then it turned into an advertisement for some fruitloop drink or other and I changed my mind. 

However, I’d still be interested in following up the diet / nutrition idea after a little more research since it’s something I keep coming back to.  My aunt, who has Lupus, has managed to control her symptoms for a long time through cutting out certain foods and I’m sure many of those would come under the ‘acidic’ category – citrus fruits, dairy, alcohol, etc.  She’s the one that advised me to switch to soya products, which definitely helped reduced my pain levels, so much so that I’ve kept it up for over five years now.

So let the research begin…

Edited to Add:

The Top 10 Anti-Inflammatory Foods You Need to Know – an article that I think is worth a read since it also lists foods to avoid, but here is the top ten just incase:

  1. Kelp
  2. Wild Alaskan Salmon
  3. Turmeric
  4. Shiitake Mushroom
  5. Green Tea
  6. Papaya
  7. Blueberries
  8. Extra Virgin Olive Oil
  9. Broccoli
  10. Sweet Potato

Some new ones there, I wonder how many different lists there are…


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I was only talking about this the other day – can the foods we eat affect disease activity / pain levels?  This article  claims that up to a point it can and, although it is quite vague, there may be one or two pointers you can pick up. Could help us understand more about the rollercoaster nature of this disease.


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One of the hardest things to get to grips with when living with Still’s Disease, and many other chronic illnesses, is how things can change so dramatically from day to day.  We are told to expect good days and bad days and this is certainly the case.  You make the most of the best days and learn to foresee the bad, usually with a steady decline in wellbeing or one that is due to over-exerting yourself.   But what about the days when the symptoms hit you like a truck out of the blue?  Do you ever find yourself wondering what you did to cause such a storm?

When I was younger, my sudden onset of symptoms would worry my parents no end but by the time I saw the doctor the next day, I would be racing round the waiting room seemingly fine.   One of the theories the doctors had was food intolerance and I eventually ended up with a list of foods, pages long,  that I was to avoid.

This is how my days seem to be going at the moment:  On Monday morning I practically bounced out of bed, commenting on how great I felt and looking forward to making the most of a lovely day.  I sat in the garden, spent maybe half an hour grocery shopping at the local supermarket and then cooked our evening meal.  Yesterday (Tuesday) I woke up and felt like I had been hit by a truck, by mid-afternoon I had retired to bed for a power nap and by evening I literally could not move; I needed help even sitting up in bed to take my tablets and was getting scared as to how I would feel in the morning.  Then I wake up this morning and am relatively okay again, the pains are there but they are bearable and I’m up and about at least.

I wish I could see what was going on inside me throughout all this, or at least ask my body what it thinks it’s playing at!  I have stopped Enbrel now I guess, but I have missed doses before while on antibiotics so I wouldn’t have thought I’d feel the effects so quickly.  So my other concern is that certain foods could actually play a part in inflammation levels; I had two lots of soy sauce, each one coinciding with an increase in pain… could it really be that simple?

Maybe keeping a food journal would be worthwhile for us after all.


Edit: Related Article can be found here

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After the subtle warning from my Rheumy’s registrar that we were going to regret my steroid intake in the future, and then looking into the possible future risks, I decided that the best thing I could do for now was to at least try to prevent that which should be preventable: Namely, the Osteoporosis.

Our bones need Calcium and Vitamin D to stay strong and steroids seem to deplete this. I have tried a Calcium rich diet in the past but somehow my enthusiasm always wanes and it gets forgotten; not that my diet is bad (we cook from fresh most days) but there are particular foods that are mega-packed with Calcium. Here’s a list of some:

  • Dairy: Milk, Cream, Yoghurt, Cheese, Rice Pudding etc.
  • Green Vegetables: Broccoli, Watercress, Kale, Spinach, Okra,
  • Beans: Kidney Beans, Chick Peas, Green Beans and Baked Beans.
  • Nuts: Sesame Seeds, Almonds, Brazil Nuts, Hazelnuts and Walnuts.
  • Fish: Sardines, Mackerel, Salmon (tinned), Whitebait.
  • Grains: Pasta, Rice, White Bread, Museli.
  • Fruit: Apricot, Figs, Oranges, Currants. Rhubarb
  • Other: Tofu

The ones with the highest Calcium levels are in bold

So from now on I will be trying to encorporate some of these foods into my diet.  Tonight, for example, we had a chicken stir fry with added Kale and Sesame seeds yum.


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My GP wanted to see me to discuss a few things and so I went for an appointment this morning; I wasn’t expecting it to go quite as it did.  Firstly, he said he was very concerned about my latest blood test results and said he’d never seen anything like it before (it is only a small practice I suppose!).  He wanted to make sure that my consultant was aware of how things were getting and I assured him that he was and that we were waiting for a date to start the Orencia.  He then asked me if I felt well enough to be at home or would I feel better being admitted into hospital; well obviously I didn’t say the latter since I don’t see what good being in hospital would do right now.

So after getting that out of the way it was onto the folate deficiency.  He doesn’t agree with starting the Methotrexate just now for the reasons I mentioned before, but obviously says it is up to my rheumy.  Hopefully, by the time it comes to that my blood tests will have improved anyway.  What he was most concerned about however is the cause of the folate deficiency since my diet is full of fresh vegetables, which are the main source of folate.  He asked the usual questions about any stomach or ‘toileting’ problems (to put it nicely), which I do usually get alongside my Still’s flares and had just been putting up with.  In fact, in the past I have suffered from malabsorption and been tested for Crohns Disease, but each time the results came back as inconclusive; all of which I told him.  So I guess we have been here before.

His conclusion was to hold off on the Crohns testing for now and instead test for Coeliac Disease, which just involves taking another vial of blood at my regular blood test next week; in the meantime, the Anaemia should improve with the Folic Acid I started on Friday.

Finally, he’s arranging for the surgeons to see me about opening up these chronic abscesses as he feels that is the only way to get rid of them.  Another hospital visit to add to the list but at least we may be getting somewhere on the road to the recovery.


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