1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!

I'm recovering, I think.

Blog entry posted by WoolPippi, May 7, 2014.

I think I am on the mend.
I've had weeks of consistently being better now. I've been running about, doing things, every day. Something’s changed in my mind. In my body. This feels like the real deal.

As I will be away from the forums for sometime now to see how far this goes, and also to live my life, I thought to share with you my views and my approach of my CFS. (It’s also a little marker for myself, should I come back in a couple of weeks, sick as ever, to illustrate how conceited I can be. Feel free to laugh at with me at that time.)

HOW CFS WORKS IMO
I feel that any major accident only happens when about 7 factors line up and go wrong simultaneously.
Small factors that are not really significant in themselves. But combined can cause a train crash, or a melt down in a nuclear facility or someone getting CFS.

Furthermore I view CFS as an illness where the bodily system is overwhelmed and can no longer cope with normal life.
What causes an individual body to get overwhelmed varies from person to person. Everybody has their own 7 contributing factors that ultimately cause CFS. That’s why for some of us Lyme is key, for others mitochondrial stuff and to another it's all about the stress response.

The 7 factors and the overwhelming are two different things. The overwhelming needs immediate attention and for this the body must me relieved from as many burdens as it perceives. The 7 factors are the cause and they need attention along the way and probably life long alertness.

BODY BURDENS
When we fall ill we all share an incapability to deal with body burdens. These can seem “silly” burdens but they aren’t.
They should not be questioned but removed from ones life immediately.

A "silly" example from my own life: showering exhausted me and I had to go to bed directly afterwards. Often I could not even towel myself dry any more and had to call my husband.

This burden felt silly and I reprimanded my body. Which did not make the burden go away.
Later on I thought up a theory that explained why my body couldn’t cope with showering (blood pressure, homeostasis, body temp, whatever)

Sillyness or theory, it doesn’t matter. All that mattered was that showering was a burden to my body. So I removed it from my life and my body was grateful for it.
I started to wash myself seated on the floor of the shower, or with a bucket in the bedroom. Once a week.
Not having to deal with the burden alleviated my body.

Removing as many burdens as possible in the heavy stages of illness will help the body save its resources.

Don’t argue with your body about what bothers it, just get rid of it.
Is it light? close the curtains. Is it cheese? eat pears. Is it your job? resign (yes). Is it your family? say: “see you in 5 years.” Is it the city? go live in a cabin out west. Is it noise? wear mufflers. Is it boredom? start knitting (it soothes the nervous system and is tactile and technical and there are patterns for everey degree of brain fog).

Some solutions may sound silly or impractical. But they are not. They are what’s needed. (I did all of these.)

MY 7 FACTORS
The second thing I did, as soon as I had some breathing space from getting rid of body burdens, was investigate what my specific 7 factors are.

I had some things ruled out via standard blood tests: vitB12 shortage; Lyme disease; Thyroid; cancer; liver problems. The usual.
Then the doctor could help me no further, he threw his hands in the air and said: “We’re used to see patients with one major thing wrong. You are all over the place! I have no idea what you have!”

We listed my symptoms: My hormones where weird. My digestion was bad and I was malnourished. My bloodpressure was way too low. My brain did not function any more and I had slurred speech. I could not keep balance. I had insomnia every night. PMS was through the roof. My blood sugar was extreme and erratic. My body was no longer able to keep its temperature or its homeostasis in check.

With this I realized it was all interconnected. It would be very hard to determine what was cause and what was effect. So I didn’t even bother trying.

Instead I thought this: “It doesn’t matter where you start to focus on. Anything will do. As soon as you improve on one area, the body will react grateful and heal (some) in other area’s. The body is great that way.”

So I chose to fix the malnutrition. On a whim.

I knew I wasn’t taking up the nutrients from my food. Digestion was minimal (grey, floating poo with recognizable food morsels). And my low blood pressure wasn’t able to deliver nutrients into tissues and organs (that’s why the malnutrition).

I fixed nutrient uptake with stomach aids (making it more acidic), by eating every 20 minutes (keeping blood sugar level), by eating only foods that are -to me- easy to digest and by laying down when the stomach empties into the duodenum (40 minutes after chewing) to allow for maximum uptake into the body. I also chose to eat a ketonic diet which requires minimum effort for maximum nutrients, I chose Homo Optimum Diet. With this you get your energy from fats in abundance. It also normalizes brain chemistry. And keeps blood sugar level. I took pancreatic enzymes and a multi-vitamin.

I aided my low blood pressure with Cortinef and by laying down a lot.

I aided/indulged my brain fog by doing only 1 thing per day.
I had the luck that during my insomnia each night I was very alert. I was able to read medical journals and research my case. I wrote little notes to daytime-me what supplements to buy or what to do. I had to be very specific as daytime-me couldn’t even remember my name most days.

I set aside a year to get better. Got rid of ambition, pressure or the need to achieve. Stopped explaining to people what was the matter.

When my body responded a bit to the better digestion and I was ready to take on the next subject and I chose hormones. Again, any subject would have worked.

With a good endocrinologist I found out I lack Progesteron. Over the years I’ve learned this is not a female hormone but the precursor to most adrenal hormones, including cortisol.

By the time I learned this my adrenals went bust, I had now acquired Addisson’s disease. I was 4 years into ME and got a new disease. Gradually I learned to live with it. And again: stopped explaining myself to people.

Sleep I have not been able to fix. But I do not care so much about it any more. I’ve found a way to wake up rested even though I toss and turn for 2 hours in the middle of every night.

Now, May 2014, I feel I am on the mend. I can look back now and identify the 7 individual actors that made me fall ill back in 2008:

FACTORS MAKING ME SUSCEPTIBLE TO CFS
  1. I'm a go-getter and overachiever. Ambitious, quick, adrenalenic. Never resting, never loitering, always productive, always plans. (Tiresome to be around, no doubt. Tiresome to be, to be honest.) Besides rooted in character and upbringing this is also influenced by a MAO A mutation I carry. It makes for high levels of noradrenaline and serotonin and intense focus (making me the opposite of AD(H)D). I'm a happy piece of quicksilver by nature.
  2. The individual make up of my intestines. They don't like particular foods (due to individual gut flora and enzymatic build up). But also literally: the way my guts are tangled. They lie such that they press against my liver which causes pain. Which causes stress (and perhaps my insomnia?)
  3. Hormones. It seems I don't make enough Progesterone. This caused Estrogen dominance (PMS from hell). Adrenals had to replace the shortage from the start which put a heavy burden on them all my life. As all endocrine organs slow down after age 25 this caused more and more problems over time making me very weak. And at 37 years old suspectible to CFS.
  4. CNS (Central Nervous System). I lacked a basic sense of safety and was in constant Fight or Flight modus for all my life. It seems my CNS was not calibrated well at birth. (not held as a baby, left crying through the night, never cuddled). This is a physical thing, not phsychological. Being in Fight or Flight constantly seriously taxes and weakens the body.
  5. DNA mutations. I lack enzymes for proper use of vitD, vitB1 and Folic Acid. Lifelong shortage on those present problems which standard blood tests won’t explain. (my GP recognized the symptoms and was stumped when the blood work didn’t reflect it. He cheered when I presented the DNA evidence, he was right after all)
  6. Insomnia. My whole life I've woken up after about 5 hours of sleep. I lie awake -very alert!- for about 1,5 hours. Then I get another 2 hours of broken sleep. This pattern robs me of REMsleep including the boast in Human Growth Hormone and GABA it provides.
  7. various smaller things: very sensitive insuline response; sensitive to Tyramine; dust mite allergy; no hobbies and never learned to relax; Atlas Profilax needed; etc.
  8. unknown factor. (mitochondria? virus? bacteria?)
I can now see how my body was hollowed out, made weak, by this factors combined. So when 2008 came about with its usual life stresses and then a little virus... I fell ill.


PROGRESS AFTER ONSET OF CFS
Over the years I regained my digestive and mental functions, just by throwing out anything that burdened my body. This included noise, fruit, raw vegetable and my mother in law.

After the first 4 years I had learned enough about digestion and nutrition; about lymph system and stress response; about CNS and hormones, to actively combine them into a daily routine that didn't made me worse.

Over the last two years I also got to understand and address the underlying factors: I started to structurally supplement Progesterone and Cortisol. About a year ago I learned about DNA and had my genome checked.

Last Summer I corrected my Zinc levels (had a horrible time with Copper Dump but very worth it) and only 6 months back I started experimenting with mB12 and methyl-folate. (go slow, go low. I take one tenth of a pill twice a week and that's all I can stand)

I did slip up spectacular a couple of times since last Summer, when I should know better.

One was stress related, I had to take to bed for 6 weeks last year only because I didn’t manage my own stress levels. Another one was cheese related (tyramine) and I damaged my kidneys a bit with that one. Then last February I nearly killed myself because I was so depressed only to find out it was caused by a stupid shortage of vit D. That one really hurt my pride and self esteem.

Then last month I had two splitting head aches a week apart before I figured out I shouldn’t eat so 10 chocolate bonbons in one sitting (again, tyramine. And frustration.)

Each time it took me faster and faster to recuperate though. I'm less scared now of the next slip up. Or the next plateau or even dip in my recovery.

THESE DAYS
It’s only a couple of weeks back that I started to take 100 mcg of Progesteron each evening, even if it doesn’t help me to sleep. Also at the end of insomnia I now take a morsel of hydrocortisone.

These two things insure I wake up rested, even though I lie awake from 3 till 5 AM. (theory: the supplements cover the wake up response my adrenals cannot provide anymore and this prevents the body from experiencing stress which it would otherwise have due to lack of cortisol just before waking up)

These last couple of weeks I'm very active during the day. This is by design. I believe movement will normalize hormone levels. and help the body to get rid of waste (which is extra generated through Methylation Protocol). I also eat very little (but a lot of calories) to preserve energy.

And I worry less about my body. This is an angle I pursue actively too, to keep my system out of Fight or Flight. (to aid this I have started Gupta Amygdala Retraining yesterday as this suits my theory of my case)

I take lots of valerian. I walk outside every day. I’ve gone shopping with friends in busy cities all day. I’ve driven my car for hours to a knitters’ party and back again. Twice in one week! This is all very novel.

I still take my horizontal rest every day, 45 minutes after lunch. It’s the only time my intestines gurgle = work. I still take stomach aids (HCL). I take time to smell the roses. I try not to think about my body or the illness. I stop any worrying.

Right now I’m a bit intense, probably on too much vit D and cortisol. What can I say, it’s a work in progress.
But it feels like the real deal and I thought I’d share.
Anna.
Hanna, madietodd, leela and 6 others like this.
WoolPippi

About the Author

reasoning with this exhausting disease, getting through the day.
  1. Xhale19991
    The gupta program has been amazing for me. I've only been on it a week and noticed huge improvements. I really think stress and CNS dysfunction is the driving force behind this disease. I was against it at first like most people, but my views have changed drastically.

    Check out Ray Peat. He has great thoughts on combatting stress through diet. His ideas are unconventional but he's a genius. He's helped so many people and when I follow his dietary guidelines I feel so much better (sugar is your friend).
    WoolPippi likes this.
  2. saint
    Thanks for sharing that - it's learning of other's road to recovery that helps us all. A little bit of knowledge here - a little there can help those of us in the throes of this disorder.
    WoolPippi likes this.
  3. Cheesus
    This is the same thing I am working with. Chip away at the small things that I can mange in the hope that the burden on my body is reduced and healing can begin to take place. I don't think I have the insight or wisdom to heal my body, the body needs to do that itself. I found the following article a very useful place to start. It is about dysautonomia specifically. but the article cites CFS as a result of dysautonomia and the author suffered from CFS herself. If you scroll down she has a list of stressors that need to be address/alleviated for the body to function correctly (similar to your list):

    http://www.holistichelp.net/dysautonomia-autonomic-nervous-system-dysfunction.html
    WoolPippi likes this.
  4. Daffodil
    LOL @ mother in law
    WoolPippi likes this.
  5. WoolPippi
    @taniaaust1, you are so right. I was diagnosed by my familydoctor with hyperglycemia back in 2004 (when hypoglycemia was all the rage) but he offered no treatment, other than to quit sugar and look into hypoglycemic ways of eating.

    I've often dismissed PCOS at a glance because I have no excess facial hair and have regular periods but otherwise I tick all the boxes, including severe thinning of the scalp in 2008. I didn't know it was linked to insulin issues.
    I do believe I've been infertile all my life. (luckily I never found out the hard way because I've never had the desire to have kids)

    ooh, how I wish to have a consult with your specialist, I could learn so much!
    Either way I'll stick to the ketonic way of eating and to physiological supplements of Progesterone, you've convinced me there's more benefit to it than I knew. Seems I luckily stumbled upon the things that are right for me. I stumbled there by trial and error.
  6. Olena
    I'm very glad you're feeling better!
    WoolPippi likes this.
  7. taniaaust1
    I thought it was good you did this post as it probably will help others. Its similar to what I think about things about ditching all those things which arent helping out of your life and working one by one on various other things which are probably affecting.

    I do think some things in your case may of been more connected then you realised. A lot of what you said sounded like you have insulin resistance (that may cause erratic blood sugar as well as many other symptoms.. my specialist in this issue calls it "pandora's box" of illnesses as it can cause so many problems). Ive found in ME it also knocks the immune system down every time our insulin spikes too high.

    This issue thou a diet change to ketonic diet can help some immediately but it is a long term healing thing (my specialist in insulin issues said it would take over a year on an extremely low carb diet).

    PMS and estrogen dominance often goes together with insulin issues (I wouldnt be surprised if you also have polycystic ovarian syndrome as that is often part of this group). ketonic diet is what helps insulin issues the most eg you need non skim milk as the fats in the milk helps stop insulin spike, low carb and high protein (high protein helps prevent some insulin spike). So sounds like you hit on the right thing to be doing first.

    My specialist has had CFS cases refered to him which turn out to be just insulin issues and fixable with being on the right diet long term (Im not saying this is the case for you).

    Your issues in the shower sounds like POTS, low blood volume, OI and the heat of the shower triggering off POTS? Your horizonal daily rest may be helping stop POTS symptoms from hitting by breaking up the length of time spent upright during the day.

    Best luck I hope you continue to get well.
    WoolPippi likes this.
  8. SquidProQuo
    This is amazing. You describe something very close to my experience. Thanks for writing this post. I'm on the mend right now to (and feeling all intense as well!). I've changed so much about my life and my similar overachiever/hard-ass attitude to get here. I'm sure i'll be back to re-read this MANY times. GOOD LUCK!
    WoolPippi likes this.
  9. SickOfSickness
    Thank you for sharing. Congratulations on your progress!

    My perspective on why we are ill and how we can recover (enough to live a normal life) is similar. I am hoping to do more of what you did.

    I feel the unknown (#8) is a very big factor, but that is the one we have little control over, so we should focus on the many other areas.

    Please don't disappear completely :)
    WoolPippi and rosie26 like this.