Tough Decisions: To Keto or not to Keto?

Tough Decisions

In February I started a ketogenic diet in order to help manage the symptoms of ME/CFS. This decision was based on Dr. Sarah Myhill’s recommendations in her latest book “Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis”.

Switching to keto is a huge commitment, you cannot do it half way. It is a very strict way of life and won’t work if you’re not committed to putting in the effort. You are essentially teaching your body to use fat for fuel instead of carbs and sugar. It’s quite restrictive and cheating isn’t an option as it can get you out of the ketogenic state.

Below I’ll outline my keto journey this far and then get to the problem at hand: whether or not I personally should continue on this journey and why I am struggling with it after 2 months.

Your advice and recommendations would be so appreciated!

The Carb Flu

When transitioning to a low carb diet, it is common to suffer from withdrawal symptoms. My initial 4 days were rough! All my initial symptoms came back, I was shaking and trembling and could hardly walk. I was so weak and exhausted physically and mentally. I just lay in bed all day and night. I didn’t get dressed for days, I ate in bed, and at that point I was already so weak from the flare I was in that I was only showering once a week!

It was not a fun time, but fortunately the worst of it passed after 4 days and I could sit up again and do simple low exertion activities like colour or crochet in bed. My body had fought the carb starvation and I’d gone through the withdrawals – things should start improving from here on!

First Month

Unfortunately for me, I didn’t see any noticeable changes for the first 32 days apart from a decrease in hunger. During my first week or two I was eating huge amounts as recommended in Dr. Myhill’s sample meal plan, but then I just couldn’t anymore. Keto really does sort out the munchies!

On day 33 however, I noticed change – I woke up without that heaviness that I have been carrying permanently for the last 2 years. My legs felt lighter and it was just generally easier to move. Still exhausting and caused pain, but just a feeling of being lighter.

Also, there was a mental clarity that is hard to explain. One of the reasons I’m able to write more these days is thanks to this clarity. I still have to work in sessions and take breaks. I still get brain fog and have difficulty understanding people when they speak, but there are times when I’m no longer in the fog and that’s a lovely feeling!

I’m not aiming to lose weight, but maintain, so I have worked out my daily nutritional goals accordingly (there’s an app for that, I wouldn’t know where to start otherwise!) so I didn’t really notice any change in my weight, though I do fluctuate easily now if I fast or feel too ill to eat for one meal, I’ll drop a kilo or two.

Another benefit I have discovered is a decrease in general constant pain. I am still aching all the time and if i do any activity (walking, typing, hold my phone, draw, etc) I do have an immediate increase in pain levels, but the general background pain that’s always there has decreased to a manageable level.

The Problem

Fast-forward 64 days and I have developed what I believe is the keto rash. It is extremely itchy, all over my body (I wrote about Keto Rash in a previous post, if you’re curious about that). The itching has become unbearable! I have actually had it for a couple of weeks now and have been slowly increasing my carb intake to hopefully make it go away.

The easiest way to get rid of the rash is to get out of ketosis which is the basic state we need to be in for this plan to work. By coming out of ketosis your body is basically switching back to using carbs as fuel. Although the thought of being allowed to eat some fruit or a sweet potato really excites me, the thought of returning symptoms doesn’t.

The Options

I have thought of various options to resolve this problem, but I’m not really sure where I want to go with this.

The idea is to have one “free” carb loaded meal to get me out of ketosis, eat carb heavier meals for a couple of days to see if the rash goes away, then hop back onto the wagon the next day and see if the rash comes back.

  1. If the rash doesn’t go away, I’ll call the GP and have it seen to.
  2. If the rash does’t return the second time I enter ketosis, then all is well, no problems – I’ll keto on as planned!
  3. If the rash goes away, then comes back, then keto is not for me.

Here would be my options in the third case, each would include remaining out of ketosis by eating an elevated amount of carbs daily to keep the rash at bay:

  1. Do I continue to eat keto foods only, despite not actually being in ketosis
  2. Do I switch to LCHF Paleo/Primal since I can no longer be in ketosis

What Do You Think?

I am interested in your opinions on this. Whether you are following Dr. Myhill’s protocols or not, if you have any experience of this Keto rash or ME/CFS, or resources that would help make this decision easier, please share them in the comments below!

If you’re interested in finding out more about Dr Myhill’s recommendations for treating CFS, I highly recommend getting her latest book on the subject. It’s so full of great information and practical advice!

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