As some of you might know, I have recently started reading Dr. Sarah Myhill's book, Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis. It's a huge book, with over 400 pages, and includes so much detail about how the body works and what she believes is happening to sufferers of ME/CFS. I'm so excited about this!
I am currently unable to read all the scientific reasoning behind her approach and she actually warns the reader about this issue and does provide a solution for those struggling with brain fog. So I am taking a leap of faith and starting on her protocols with the hope that I will eventually see some improvement in my physical and mental ability. Both of which are seriously low right now.
Once I've read the whole book, or enough of it to form a more intelligent opinion on it, I will write a full review, for now I will focus on my journey with the protocols she suggests.
As the name suggests, Dr. Myhill suggests a Paleo lifestyle for people with ME/CFS. Not only, but she highly recommends going into a state of ketosis. In a nutshell, this means that we should train our bodies to use fat for fuel instead of carbs and sugar which is so readily available and consumed in our western diet.
Usually a low carb, high fat diet (LCHF) relies heavily on dairy for fat supply. Things like full cream, cheese and yogurt, but Dr. Myhill's approach is Paleo, which means a LCHF diet without the dairy. This leaves you with natural, unprocessed foods, so is a very clean and healthy way to eat.
I started the new diet, cold turkey, about 2 days ago. Once I had sent a photo of the protocol to my mum, she promptly started feeding me exclusively from the sample menu! I love that my family is so supportive and encouraging. They are doing everything they can to help me on this road to recovery.
Today is actually the third day and I am already starting to feel the consequences of eliminating carbs and sugar from my diet. Dr. Myhill explains these side-effects in the book too. It's as if she is walking the path with you, anticipating reactions and providing advice in advance. She has treated over 6000 CFS patients, I find that very reassuring.
As far as I can tell, I'm experiencing three of the six side-effects outlined in the book.
The first is running out of fuel. Apparently when you make the switch cold-turkey as I did, your body doesn't yet know to use fat as fuel, it fails to keto-adapt as it's still expecting carbs. So your body responds as if it has run out of fuel or energy completely. This causes a general worsening of all symptoms - check.
The second side-effect of this transition to ketosis is hypoglygaemia (low blood sugar). This should sort itself out over time, but in the meantime I experience fatigue, brain fog, palpitations and tremors - check. Yesterday the tremors were bad, today not so much.
The third side-effect is detoxification or acute poisoning as toxins are mobilised in the system and start to flush out. The symptoms include fatigue, brain fog, and the return of old symptoms - check. There are other scarier symptoms of detoxification, but I have not yet experienced rashes and feeling poisoned, although I have been itching like crazy all over my body.
So in summary, since starting this transition to a paleo-ketogenic lifestyle, I've been experiencing palpitations, tremors, muscle twitching, numbness in my limbs upon waking and for hours after.
I also have a general fatigue increase, pain increase, return of old symptoms, fogginess, dizziness upon standing up - sometimes blacking out for a moment or two, problems with balance - falling over.
Almost all of these symptoms are mentioned in the table of side effects. It is explained in the book that this is normal and the key is to be consistent, avoiding carbs, and the body should keto-adapt eventually.
Updates to follow...
- Transitioning to a paleo-ketogenic diet (currently on this page)
- My first 40 days on a paleo-ketogenic diet
- How the ketogenic diet has reduced my ME/CFS symptoms
- How to get started on a ketogenic diet
You can order the latest revision of Dr Myhill's fantastic book here. It is a great book, jam-packed with information which empowers the patient to help themselves. There are 2 covers depending where you're buying it, but it's the same book.
Had a lovely quiet holiday weekend, but did enjoy my first outing in a couple of months on Christmas day. Was super blessed to have such understanding and considerate friends and that the Lord gave me just enough strength and relief to be able to really enjoy the day! Praise God!
December 3 is International Day of People with Disabilities. It's a great opportunity to raise awareness and make some noise all over the internet (and in real life) if you can manage it.
The message I want to get across this year, is that not every disability is visible.
It all started in 2014. I would occasionally get random, migrating pains in my hips, thighs and arms. It was quite painful and alarming. Because it never hung around long, but just came and vanished quickly, I didn't do anything about it. It wasn't very frequent initially.
By November 2014 I was in constant pain. At this point I went to see my doctors, but they couldn't help me. They did loads of blood tests and couldn't find anything wrong. They were frustrated and had no answers. So they just sent me home with painkillers. Months passed, but the pain didn't.
A couple of days ago we had some gorgeous sun after a few dark and dreary days… Here I’d just got up and was getting dressed when I realised how warm the sun was and decided to sit right there and collect some sunshine D! Only managed ten minutes in that chair, but it was lovely and warm.
My flat is so tiny, here I’m sitting right in the middle, halfway to the bathroom (top right), kitchen (behind me) and my bed (on the left side where photo is being taken from)… You might be able to see my walking frame standing on the right side of me too…
I love the sunshine so much, the warmth really brings a sense of wellbeing and eases the aches a bit. Not looking forward to a long winter, but it will make those sunny moment that much more amazing!!
Hopefully you can’t tell how horribly hairy my legs are or how one has been partially epilated while the other remains fully furry! Just had to stop after three lines up my leg… Take it in shifts. Might do some more today actually.
I know it’s not necessary, like painting ones nails, but it does make you feel better… Well, it makes me feel better anyway. Still hate seeing how my legs have deconditioned so much, no shape, no tone or muscle, just skin and bones which are now easily felt – it’s grosses me out that I can feel my own skeleton!! lol… But I know that one day I’ll be able to do a bit more activity and rebuild my muscles again. Till then it’s a matter of making sure I don’t lose them completely and then lose the ability to move myself.
So Maintaining movement, however little it might be now, to keep the joints and muscles as mobile and strong as I can now. Without overdoing things and making my general wellbeing worse. It’s a fine balancing act trying not to boom and bust… I tend to do too much and crash.
So grateful for all the help I get at home (my sis) and through the NHS (my therapist). PraiseGod!