Giving up sugar with ME/CFS

[Punkygoth]

Hi
I wondered if anyone has any experience of giving up sugar?
I have had ME for 14 years and for various reasons, I have decided to give up processed sugar (I am still having fruit).
I am on day 5 and I am finding that it is making my ME symptoms much worse.
If anyone else has done this and can offer any advice as to how to cope with the physical symptoms of the withdrawal and the effect on ME symptoms, I would be grateful for any tips.
Thank you

 

[aaron_c]

I did this back when my ME was just me having a bit less endurance than most people my age. I crashed to where I mostly spent the day lying on my bed. But once my body figured out the sugar thing, I recovered somewhat. Not to where I was before, but maybe to 80% of it. On the plus side I was no longer addicted to sugar, which was great.

So I'm not sure what lesson is to be learned from my experience. I can't imagine that a sugar addiction is good in the long term. My diet was quite extreme, so that may have caused some of my issues: I only at quinoa, kale, and a tiny bit of salmon every day (I am not recommending this, it was stupid).

Apple cider vinegar did wonders for my sugar craving and blood sugar. You can try drinking a shot glass of it straight, or diluting it with water and maybe stevia. The best option I think is apple cider vinegar pills, which won't erode your teeth.

I didn't try this at the time, but I wonder if part of the issue is that we have problems producing energy in the first place, so reducing the amount of sugar coming into cells makes us rely even more on fats and proteins for energy--and we seem to have difficulty regulating these pathways like healthy people do. Some supplements might help with this...biotin, carnitine, adenosylcobalamin....I'm not sure about b1 or b5, but they might help too. B6 is necessary for protein catabolism, but I'm not sure if it will be rate-limiting. This last paragraph is mostly just shooting from the hip, but if you feel desperate/adventurous enough, they could be worth a try.

 

[ahimsa]

I wondered if anyone has any experience of giving up sugar?

Back in the early 1990s, before I had a diagnosis, I tried a no sugar, no caffeine, and no-gluten (to see if I was sensitve, not because I had tested positive) diet for about 8 months. I set a goal of 6 months but then I kept at it a little longer.

There was absolutely no improvement in any of my symptoms.

Your mileage may vary.

 

[Basilico]

I have heard of some people here doing better with a low carb diet.

I spent about 1 year eating low carb paleo. Only sugar came from fruit, and there were periods of time when I didn't even eat fruit.

I think that time it was a bit like the frog in the boiling water for me. In the beginning, I think eating that way felt pretty good...then slowly over time I think I felt worse and worse. After eating that way, I switched to a high carb diet and I initially felt much more energy and I thought that was the solution. Then I slowly started feeling worse again.

At this point, I can honestly say that I have tried every kind of diet and my health did not improve as a result of any dietary changes. However, not everyone is the same, and if you think it could help, it's worth trying if for no other reason that to not have the doubt in the back of your mind that should have tried it.

What symptoms are worse? I know from my years on the Mark's Daily Apple forum (high fat/protein low carb) that in the beginning fatigue and brain fog are common until the body becomes more efficient at burning fat. Many people there would take ketones to jumpstart this process, and for some taking ketones was the only way to feel good eating that way. Have you tried this?

Also, from what I remember, some people on that site were into taking whey protein supplements...and my husband notices that non-denatured whey often improves/reduces his PEM...have you tried this?

 

[Jessie 107]

Hi
I wondered if anyone has any experience of giving up sugar?
I have had ME for 14 years and for various reasons, I have decided to give up processed sugar (I am still having fruit).
I am on day 5 and I am finding that it is making my ME symptoms much worse.
If anyone else has done this and can offer any advice as to how to cope with the physical symptoms of the withdrawal and the effect on ME symptoms, I would be grateful for any tips.
Thank you

I haven't tried giving up sugar yet, I don't have a great am of it. It's strange because before becoming ill, I could easily avoid chocolate and cake, but now I really want to eat chocolate and find it hard now to resist!
How much sugar do you think you are having?

 

[pamojja]

I could easily avoid chocolate and cake, but now I really want to eat chocolate and find it hard now to resist!

Have stopped suger many years ago because of prediabetes. Still use Stevia extract for my sweet tooth. Me too, am craving for chocolate, mostly use 90% cocoa content chocolate. Guess, beside many other goodnesses in cocoa, it also has a high copper content. Did you ever test for copper deficiency?

 

[PatJ]

Me too, am craving for chocolate

Chocolate cravings can be a sign of magnesium deficiency which is common in people with CFS/ME (and in some women during PMS). Chocolate is hard on the adrenals so you would probably do better trying a magnesium supplement to see if the chocolate cravings disappear.

 

[pamojja]

.. so you would probably do better trying a magnesium supplement to see if the chocolate cravings disappear.

Good catch. However, I've already titrated up to 2.3 g of supplemented elemental Mg already (1.5 g/d during the last 8 years in average), beside the 40 g/d of dark chocolate (additional half of that as pure cocoa powder).

 

[boombachi]

My experience was a bit like aaron c
I gave up all processed sugar and simple carbohydrates about 5 years ago. I get sugar crashes really easily so although it has not cured me, I don't have to deal with sugar crashes on top of ME crashes.

I had a really tough time giving up. I could have slept 24/7 for about a week if I'd had the chance but once I got over that it was worth it. I don't crave sweet stuff as much now either.

 

[Jessie 107]

Have stopped suger many years ago because of prediabetes. Still use Stevia extract for my sweet tooth. Me too, am craving for chocolate, mostly use 90% cocoa content chocolate. Guess, beside many other goodnesses in cocoa, it also has a high copper content. Did you ever test for copper deficiency?

No don't think my doctor tested for copper and I hadn't considered it before, maybe I may try a magnesium supplement to see if it will make a difference. Still going to eat my twix tonight though!!

 

[ukxmrv]

I've not found that changing my diet (such as giving up sugar) have ever had an positive effect on my ME symptoms.

It's bad enough having an incurable, neurological disease without making pointless changes to diet. There are foods that make my stomach worse and foods that do give me more energy and functioning.

It may not be a withdrawal. We have had so many discussions on diet and ME. If you feel worse after removing a food (as I did with red meat once) you may be removing one of the few ways your body has of getting energy that works.

 

[lafarfelue]

I gave up sugar (fructose/sucrose) completely in the late 2000s for a couple of years. I don't remember having had too much withdrawal, but along with giving up sugar, I upped my vegetable and animal fats significantly. More oils, more butter, more nuts, more avocado, no cutting fat of bacon or steaks, full cream milk, etc.
There's a lot of healthy stuff in those fats, and they help with the cravings that may inevitably occur.

I'm not super strict with sugar these days (I don't eat sweets or processed foods, or much fruit to be honest). I really notice when I have sugars, that I bloat and my system goes a bit haywire for a few days.

Hope you feel something positive from it, once you get through the toughest part at the start.

 

[perchance dreamer]

I gave up almost all sugar after learning how truly terrible it is for your health. What I found is that after going cold turkey, it really reduced sugar cravings so that I don't really have a sweet tooth anymore.

However, if I found I had a dreadful, certainly terminal illness or if I knew an asteroid was coming toward the earth that would be catastrophic, I'd want to eat two desserts from my childhood: peach cobbler and vanilla pudding. But that would be more for comfort than for taste.

 

[PatJ]

Before developing CFS/ME I used to consume a lot of sugary drinks. I quit cold-turkey and quickly lost 20 pounds. I then started looking into sugar as an added ingredient and found it in so many places of the processed foods I used to eat.

Now that I rarely eat foods with added sugar my body has adapted and I can taste the natural sweetness in many foods.

 

[pamojja]

However, if I found I had a dreadful, certainly terminal illness or if I knew an asteroid was coming toward the earth that would be catastrophic, I'd want to eat two desserts from my childhood: peach cobbler and vanilla pudding.

LOL. For me the diagnosis of such dreadful disease, PAD, was the actual reason to say goodbye to sugar forever. Mentioned prediabetes only, because it's the main driver for that disease.

And indeed, together with other diet, lifestyle changes and supplementation I could turn it around. Got a 60% walking-disability due to PAD revoked again.

 

[Marigold7]

All my life I had craving for strong coffee and in recent years a big mug of sweet coffee sets me up for the day ( NB talking Nescafe Gold) ... Recently read some research that advocates sugar and caffeine for M.E so am continuing my ways. In the early years I was tested often for diabetes as my blood sugar levels are erratic and I know when I need something sweet now and eat it. i cannot eat big meals any more ( old age) so I graze now. Love cake and enjoy it.

Each of us is different.