Chronic fatigue syndrome (CFS), technically known as myalgic encephalomyelitis (ME), is an extremely debilitating illness in which the energy producing organelles of the body break down. The body needs energy for almost everything, so the consequences of this lack of energy can be severe and varied. Unfortunately CFS is also very misunderstood, with many health professionals continuing to tell patients it is incurable and there is nothing you can do.
I personally had chronic fatigue syndrome for 2years followinga viral infection which I contracted during an exceptionally stressful and emotional time in my life. I know how hard it can be to feel mentally and physically exhausted literally all the time, how disorienting it can be to have brain fog 24/7 for months on end and how frustrating it is to have muscle aches and emotional anguish that no one can see.
I also know what it’s like to get better. It is absolutely possible. There is so much scientific evidence and so many recovery stories out there, it’s almost criminal that people are still being sent away from doctor’s surgeries believing there is no hope. Pharmaceuticals unfortunately have little to offer for this condition; there is a high chance your doctor will recommend antidepressants or analgesics as a bandaid, but they do not have anything to offer that will repair the energy networks in the body. Thankfully there are many other treatments that can be highly effective. Healing from CFS is a difficult journey and it will take time, but you have to get started and just keep moving towards ‘better’. These are the 8 key things I find to be most essential for recovery.
1. CFS HEALTH ONLINE RECOVERY PROGRAM. If you are only going to do ONE thing off this list, you must look up Toby Morrison at CFS Health. Go to his website, sign up for his free daily emails, watch his Youtube videos, buy his ebook and if it feels right for you, sign up for his online recovery program. Toby is amazing. He experienced severe chronic fatigue syndrome as a teenager and after seeing many specialists and ‘experts’, eventually guided himself through his recovery and is now fit, healthy and helping people around the world. He completely understands the experience as he has not only been through it himself, but also guided thousands of his clients through recovery in his Melbourne-based centre and online program. Finding Toby and going through his easy to follow, reasonably priced online program was the biggest turning point for me. He will teach you about many of the things I am about to mention but is especially helpful for guiding you through the exercise and mindset factors. www.cfshealth.com
2. HERBAL MEDICINE. Herbal medicine has so much to offer the chronic fatigue patient. The right herbal formula can give energy, restore liver and brain function, have antiviral effects, help the body adapt to stress, reduce inflammation and pain, and lift a dark mood. Withania, St John’s Wort, Echinacea, Ginkgo biloba, Bacopa, Astragalus, Siberian Ginseng, Rhodiola, Codonopsis and Turmeric are just some of the amazing herbs that might be considered for a CFS patient. I highly recommend seeing a qualified naturopath or herbalist to formulate you a herbal tonic matching your specific needs; this will give you the best results and avert any safety issues. If you are not taking other medications and are currently unable to seek professional help, Astragalus 8 by Fusion or Oriental Botanicals is an amazing herbal formula found in health food stores that is generally very healing for people with CFS. Depending on the herb, it can take up to two weeks to start noticing the effects but it is important to take your herbs consistently for a decent amount of time – especially if you’ve been sick for a while – to allow the body time to come back into balance. Herbs treat the cause of illness, not just the symptoms, and this can take time to repair.
3. NUTRITION. It is absolutely essential to ensure you are eating as well as you can at this time. Food is fuel and if you’re already fatigued you need the best quality fuel possible. It can be difficult if your appetite is low, and you may crave sugar or salt when you are hungry. The main thing is to eat natural foods and avoid things that are highly processed; your body cannot cope with an onslaught of toxins when it is already weak. Coffee, energy drinks and alcohol should be avoided. Stay hydrated with lots of water and herbal teas. Protein smoothies can be excellent – I personally found that when I started having protein powder twice daily I no longer needed my afternoon sleep, which was huge progress for me. I would make a smoothie of Vital Greens vegan protein powder, raw cacao (rich in magnesium), maca powder, chia seeds, banana, leafy green vegies, coconut milk, ground cinnamon and frozen mango or berries. Into that I would add my powdered supplements such as D-ribose and N-acetyl cysteine. Bone broths and soups are also great for getting a good dose of nutrition that is easily digested. Eating organic foods is highly preferable as a number of commonly used pesticides have been proven to specifically damage mitochondria (the energy producing organelles in the body). Budgeting can make this difficult especially if you are unable to work full time, but consider looking into organic farmers and markets where you can often find fantastic produce at affordable prices. Food intolerances may need to be considered. Nutritional supplements are very important in repairing the body’s energy systems. Coenzyme Q10, N-acetyl cysteine, magnesium, D-ribose, protein powder, B vitamins, probiotics, glutamine, proteolytic enzymes and acetyl-L-carnitine are some of the supplements that are most effective for people with CFS. Again, it’s best to see a qualified naturopath or nutritionist who can prescribe the right products for your individual needs.
4. EXERCISE. This is possibly the most important part of recovery, and also the hardest to get right. When you have CFS for a prolonged period of time, a lot of your muscle mass may waste away since you can’t exercise the way you used to and your muscles aren’t able to recover and repair properly from the activity you do perform. Everything you know about exercise probably tells you that you need to challenge yourself to grow; push yourself harder, lift heavier, run faster or further… and it hurts for a bit but over time you get stronger and faster and better. When you have CFS, all of that goes out the window. You have to forget that mindset because it will ruin you. When you have CFS, you can’t push yourself at all or you will pay the price. The ‘push and crash’ cycle of someone with CFS is often what keeps you trapped in the illness. You think you’re feeling better so you run, even though you’ve barely walked in recent days. It feels good at the time but the next day you can barely get out of bed, your depressed and achey all over, and it takes you weeks to even get back to feeling somewhat normal. Your health has taken a huge step back. Sound familiar? The thing is, to truly recover, you have to exercise, BUT you have to do it right. Toby taught me that you have to figure out what you think you can do consistently every day without becoming fatigued, and then only do 50% of that. Even if it feels like nothing, even if it means you walk for 1 minute or do 2 push ups, that’s all you do. And the next day you do the same. And maybe a week later you will increase your workload by 10%. It’s a slow process but you continue to move forward instead of peaking and crashing. This process was the most difficult and confusing part of recovery for me, and it’s really where I found Toby’s guidance made a massive difference.
5. ROUTINE. If you’re going to work towards normality, you need to start creating routine in your daily activities. This means waking up and going to bed at similar times, taking your naps at the same time each day, eating your meals at regular intervals throughout the day, schedule your exercise for the same time and make it a priority. It starts resetting your mind and body and helps you feel there is a purpose to your day rather than aimlessly drifting through it in your foggy, sleepy state. It also enables you to track your gradual progress over time, for example by reducing your nap times or increasing your exercise time. There will be days where you are too exhausted to stick to your routine and you stay in bed all day, but for the most part, it is important to stick to your realistic daily routine. Too much sleep can sometimes be as problematic as not getting enough. If you live with family or loved ones make sure they know your routine so they can support you in sticking to it.
6. SLEEP. Some doctors will tell you that you just need to go home and sleep to get better. You will probably feel like throwing something at them with your feeble little arms because you’re already sleeping all the damn time and that’s what you want help with! While sleep alone is more a symptom of CFS than a cure, it IS essential to make sure you get enough rest. As mentioned in my previous point, you don’t want to allow yourself to sleep too much, but in general you will need much more sleep than the average person’s 8 hours. It can be tricky to figure out your sleep needs but work out what makes you feel best then create your bedtimes and waking times which may include daytime naps to start with. To ensure the best quality sleep for healing, you may want to take a herbal sleep formula such as Flordis Redormin (a combination of Valerian and Hops). Take your B vitamins in the morning and not before bed as they can keep some people awake, and also avoid chocolate, cacao, maca, green tea and black tea before bed. You may like to drink chamomile, passionflower or lavender tea before bed for a mild sedative effect. Make sure the room is dark and quiet and massage a couple of drops of lavender essential oil into the temples before climbing under the covers.
7. MINDSET. Being exhausted all the time and having unrelenting brain fog can be extremely depressing. It is totally reasonable to feel very hopeless and frustrated when you suffer with something like CFS, especially as time goes on. You also don’t have any spare energy to cope with the hard things life may throw at you during this time. Relationships can suffer, your work situation will probably change, money can become an issue, and then there are deaths, tragedies and daily stresses that everyone has to go through at some point. When everything sucks, trying to hold your head up and be positive has the potential to send you into a deep depression. For some people it works, but it can be a constant battle. One of the hardest things that basically everyone with CFS has to do before recovery can begin, is to accept where you are and let go of who you were before. You may have been an elite athlete, but you’re not right now. You may have had great stamina in the past but you don’t right now. Accept that the journey will take time and be grateful for all your improvements, no matter how small. Believe you will get better, and definitely DON’T buy into the ownership of the illness. CFS is not who you are; it’s an experience you are going through right now. All too often I see people who are so quick to claim their illness and define themselves by it and even cling to the idea that they won’t get better. It can turn people very bitter. It’s very confronting and hard to swallow, because CFS is hard and it is unfair and you can feel very misunderstood. Sometimes it’s easier to just throw in the towel and cry and be angry rather than painstakingly clawing your way back to good health bit by bit. If you accept defeat though, that is where you will stay. CFS really can take your whole life away – but that is why you have to do everything you can to move forward. The physical changes brought on by the herbs, nutrients and exercise will make changing your mindset more manageable. Meditation, affirmations, gratitude boards, journalling and watching Toby’s Youtube videos will also help.
8. SUPPORT. If your friends and family don’t get what you’re going through, find someone who does. I tried many times to explain to my friends what was going on, but I think it was just confusing for them. I would explain the whole thing and then when they saw me again two weeks later, it’s like they forgot and thought I must be all better. People don’t see you behind the scenes, they don’t fully understand how tired you are, because if you can join them for a cup of tea or a BBQ and appear normal in that time, that’s what they remember – not the part where you went home and slept for 13 hours straight because it was so exhausting to socialise for an hour. I was lucky in that I had support from my naturopath friends, who not only understood it on a friendship level, but also had the medical background to realise that my symptoms were very real and challenging. My family were wonderful but I still think it would have been hard for them to grasp the fact that I wasn’t just being lazy. Having a great naturopath, counsellor or even beauty therapist or hairdresser can make all the difference to your journey. My beautiful dog Puzzle was with me throughout my recovery and his unconditional love made everything easier. Toby’s recovery program includes access to a Facebook group with all his program members so you can chat to people who are going through the same struggles as you. Personally, I found it too overwhelming and I didn’t want to identify with being so sick so I didn’t engage with it much, but I could see that for many people it was healing for them just to not be alone. Sometimes you need to vent and have someone agree with you that it is really hard. Aside from emotional support, you may need help just to pay your bills, get through your everyday tasks or someone to go to the shops for you if you’re bedridden. If you are blessed enough to have people who love and support you through this process, take a moment to feel gratitude for them every single day. It would be tremendously challenging to survive CFS all on your own.
Whew! That was a long one. I really do hope this helps someone out there! I will be elaborating on some of these points in future posts, so if there is a particular aspect you want more information on, please let me know. x