Thats a pretty bold statement isnt it?
CFS is a relatively new concept in the medical world. Only the last 15 years it has gotten some reckognition. It is a pretty modern problem as far as we know, in the same lane as fibromyalgia and burnouts. It has not been easy to break down all the signs and symptoms and create a good overview for people with this condition to follow and improve with. Luckily in the later years there are more specialized centres popping up around the world (Norway, Australia) with the sole focus of diagnosing and treating CFS. Unfortunatelly there is too little knowledge in the general medical community about it and it can be extremely frustrating to visit 7 different general practioners and house doctors all telling you to stress less or that its all in your head.
CFS is an umbrella term for a lot of subcategories of fatigue and a lot of people experience it different. It can be induced from faulty medication, a virus (As in my case, check out the podcast in the previous post to listen to the whole story), burnout, post natal depression and probably several other conditions too. The most common symptoms are:
- High cortisol / High stress
- Heart palpitations
- Muscle aches / pains
- Light flu feeling
- Constant tiredness
- Brain fog
- Light sensitivity
- Sound sensitivity
- Post exercise /activity malaise
The worst case I heard about was someone who was in a dark and quiet room for 20 years because just sitting up in bed was too heavy and exacerbated symptoms. It was the same with 5 minutes of sunlight. On the other end, the quickest improved case was a busy American woman who ended up removing all stress factors from her life and moved to the country side, back to her mom who took care of her for 6 months. She quit her job, divorced her husband and left the busy life to only fully focus on getting better.
My experience with CFS started almost 10 years ago and put a swift end to my sports career. It developed from EBV (Epstein Barr Virus/ Mononucleosis), where I did not respect the symptoms for too long and kept training too hard. The first worst 2 years I could not do much except rest, and that was a good opportunity to start researching what was going on with my body. It proved to be extremely difficult as there is hardly any information out there. As an evidence based therapist myself I first start checking the official medical journals and articles, but there was hardly anything to befound. A few lesser verified articles with some useful information could be found as well as a book written by a doctor who had CFS herself and did some independent research. All in all, not much to be found. No surprise really as it is a relatively new problem. I dont expect pharma of the medical community to spend a lot of money on research unless they have the actual medicine to sell. What I really did find helpful though was Youtube. Here I found more people with similar symptoms and stories. It was really good to hear their unique experiences and how they dealt with it. Especially hearing about those who got better from it. It was really important for me to find that hope when I was at my worst. After a deep dive in the rabbit hole and digging out reseach where I could, I tried a lot (A LOT) of different things to get better. I even did a full orthomolecular course to learn about natural supplements and spent hundreds (maybe thousands) of euros on medicine and pseudo medicine. A lot of trial and error. Most things didnt work, but I did find a thin red line to follow that helped me progressively get better. Now 10 years later it is still there but every year I see improvement. I still need to take a lot of care but as long as I do, I can live a normal life, train, socialize and deal with normal life again.
So WHATS THE SOLUTION DUDE!??
0: INFORM the people close to you. If they are good for you, they will understand. Tell them you have this condition. It will mean you will probably not be as present anymore. You must sometimes miss birthdays and social events. Not because you want to but because it is not always good for you. Especially in the beginning when it is at its worst and you HAVE to avoid things like this to improve. You might be years off the radar for some people, even your best friends. you CAN NOT SEE SOMEONE HAS CFS ON THE OUTSIDE. They look normal and healthy to most. Make your family, friends and colleagues aware of this.
1: MINIMIZE STRESS
Stress can be physical (hard exercise) mental (stress, anxiety etc) hormonal (high cortisol, menstrual cycle etc) environmental (busy crowds, loud noises etc) and social (friends in trouble, relationships). You might stress your body through what you eat and drink as well. Imagine what you do to your body and mind if you only ate junk food for a week. Locate your stress factors (You know what they are) and minimize them as much as possible. I know that is in some cases impossible/extremely difficult. You can not just get rid of your kids and in some cases not change jobs or stop working. Make an overview over what you can and can not change, and get to work. You can not be afraid of confrontation.
Regulate controllable external factors such as diet/medicine/supplements. I developed a caffeine sensitivity and gluten sensitivity. For me it was CRUCIAL to stop caffeine intake. Defeinitely no pre-workout or similar stimulating products like Red Bull. Gluten can cause inflammatory processes in the body. Your gut is extremely important for mental health so you HAVE to watch what you eat. Adding a probiotic supplement seemed to work well for me. Actually it was the only supplement of dozens that somewhat worked for me. You need to find a good and balanced diet for yourself and keep your gut healthy. Eat as healthy as possible routinely. Enough fresh fruit and vegetables, a good balance of macros while avoiding too much junk food, rafined sugars, trans fats and highly processed foods. Check your poop! Read and study yourself and food in general. The ultimate diet is different from person to person.
3: MANAGE STRESS
Whatever necessary stress you have to go through, set yourself up for success. Can you make any changes to make it better/more manageable? Can you get help with the kids, change your work schedule etc? A good tip from the Australian CFS centre in Melbourne is to make a point system individual to yourself. 10 points is your max limit and the amounts of points you can use in one day without burning out and worsening symptoms. Find out what takes the most energy with the things you do in a day and split the 10 points. For example: cleaning the house 4 points, coffee with a friend 2 points, 1km walk 3 points etc etc. As you improve the point system will change.
Make every day the same as much as possible. Wake up the same time and go to bed at the sime time. Eat at the same time and try to do your daily chores around the same time. If you need/want to do something out of routine, plan it ahead with your energy levels, so that you know your battery is as full as possible.
5: GRADED EXPOSURE/EXERCISE
This is not only to get yourself back into normal life, but also can be used as a measuring tool of your physical health. For me it started walking one flight of stairs. From there I built up to in 9 years being able to attend high intensity trainings in the gym. Some start at a lower level, some higher. Find your limit and work under it repeatedly and structured. Maybe thats sitting up from bed 5 times in a day. Maybe its 1 km biking. Find your benchmark, keep it functional for yourself and work from there. I noticed as a former squash player that my body handled squash movements a lot better than other type of training when I started increasing my activity level. That was functional to me, and something my body was more used to.
This. takes. time! This takes years for most people. Decades is not unusual. But I do believe that there is something everyone can do to get better. Stay positive. Talk to people that have gone through it. Find information where you can, and if you are lucky enough to live somewhere they have a specialized CFS centre or therapists, go have a look!
7: POSITIVE MINDSET
Mind and body are connected as we know, and as we fall into a dark spiraling hole we think we can not get out of, our minds are a crucial part of the process. Placebo is always mentioned as something fake, but it only proves that we, ourselves have the ability to convince ourselves that we are more sick then what we actually are. So your your mind power to think yourself healthy instead of thinking yourself sick!
If sleep was a pill it would be the most attractive supplement in the world due to its health benefits both mentally and physically. It is strange how often it is overlooked, supressed or ignored. A person with CFS often need more sleep than the average person. Respect it. This is the foundation of your recovery. On days with severe insomnia, make sure the following day(s) are easy and with little stimulus.
Get in touch with your body. However you choose to do it. The Iceman method, a Youtube video with guided meditation, simple breathing techniques or yoga can all be good options. Basically what it does is giving you a few minutes a day to feel your body. Get back in touch. Nowadays we are always stimulated and entertained. We are never bored anymore. We do not pay attention to our bodies, but rather look for constant stimulus in form of pills, coffee, drugs, screens, food etc. Give yourself 30 minutes a day to relax, breathe and focus.
When you are suffering from a condition like CFS, you have to be extra wary of how you treat your body and mind. You have to make inventory of your self and manage your life like a book keeper or a pro athlete. You have to put everything in the right place in the right structure. Throw away the junk, focus on the good, work structured so you know what works/what doesnt and be consistent. If there are other underlying health conditions or medication you are taking, keep in mind how these can also affect the CFS.
A healthy person has 100 problems. A sick person has 1.