When Edie Summers was in her 20s she was in a severe ski accident which required extensive therapy, medication and surgery. Edie and doctors think her body’s physical trauma from the accident and the subsequent surgery had a secondary impact — the onset of Chronic Fatigue Syndrome. In Edie’s process of healing her body from the ski accident she had learned a great deal about alternative therapies. She decided to heal her Chronic Fatigue Syndrome in the same way. It would take two major bouts of the illness to rid herself of it, but today she lives virtually symptom free.
How do you think you got Chronic Fatigue Syndrome from a ski accident?
I had to have surgery and I think it started from that. Chronic Fatigue Syndrome starts in the brain. We have a conscious brain and an unconscious brain. One of the jobs of our unconscious brain is to keep us safe. I think in some people in a situation like surgery the unconscious brain can interpret that as a very stressful event and it can put us on high alert after that event. It’s also a neurally-mediated condition involving the HPA axis, the hypothalamic-pituitary-adrenal- axis, and may be influenced by improper detoxification which can “stress out” the body.
The jury is still out on what Chronic Fatigue Syndrome is or what the source of it is. It essentially means your body is constantly in a state of fight or flight. They think it can start from a trauma, injury or even really low cortisol levels. Your brain can be in a constant state of fight or flight and you cannot even be aware of it.
You had Chronic Fatigue Syndrome twice?
Yes the first time was as I was dealing with the ski accident when I was in my early 20’s and the second time was when I was in my mid-30s. I was doing a lot better after I healed myself the first time. I was stable, even symptom free.
Then unfortunately I chose to marry a closet alcoholic and it was a violent marriage. I started not sleeping well. I was experiencing random bouts of violence and was feeling high, high stress. I started feeling exhausted again. In my case, I don’t detox well. I don’t do well with synthetics and prescription drugs and those types of things. In the process of getting divorced I moved into a place that had new carpeting and new paint and the off gassing of those made my symptoms even worse. I went from being exhausted to being sick. The second time was worse than the first time. It was devastating to me because I thought that chapter of my life was over. I thought I had taken care of it.
How long did you have Chronic Fatigue Syndrome both times?
It was about 6 years each time.
Do people who have Chronic Fatigue Syndrome suffer from it daily or is it possible not to feel the symptoms for a few weeks, months or a longer period of time?
Most people feel it daily. Some might not have symptoms for a few days here and there, or it could be a longer period of time they don’t feel symptoms, like weeks or months, but that doesn’t seem to be as common.
Do you think there is any risk that you can get another serious bout of Chronic Fatigue Syndrome?
For me, no. I am very aware of what triggers it in me — any kind of severe stress, whether it’s physical, mental, emotional, environmental, or social — and I have the tools to mitigate any symptoms.
How did you get into natural medicine for Chronic Fatigue Syndrome?
I got into natural medicine because of my ski accident. I couldn’t get my knee past 90 degrees and they told me this was as far as it was going to go. I told myself, ‘This can’t be true.’ They had prescribed me all of these anti-inflammatories and what is now called Aleve. I got horrible, horrible depression from the Aleve. I took myself off of everything and I went and saw a naturopath. It was the first time I talked to anyone except for my doctors. He said that I was getting inflammation from all of the drugs I was taking and he suggested arnica which is a gel I put on my knee. Then internally he suggested I take papaya and devil’s claw supplements as anti-inflammatories.
After doing that I went back to rehab and got all the mobility of my knee back. The doctors were really surprised. From that experience I got very curious. I got a job at a natural foods store working in the supplements department and I was there for seven years. I got a lot of training in seven years and my health got better and better in that time period.
How was healing the second time different than the first time?
The first time was mild compared to the second time. Awareness was very, very key to my healing the second time. The second time I was applying all of the things I had the first time and it was just not working as well. When your cortisol levels get so low it creates inflammation and it gets hard to move. I was in bed for six months. I had to use a lot more supplements the second time. I had to be really careful about what I was eating. Chronic Fatigue Syndrome affects your digestive system, immune system and nervous system. I was a mess for awhile. Cell food which has bio available oxygen really helped my energy levels. I took homeopathic thyroid, homeopathic adrenal, homeopathic hypothalamus and pituitary and all kinds of homeopathic stuff. I took spirulina which is really good for B vitamins. What people need can be different for everyone.
Edie Summers, Healed Chronic Fatigue Syndrome, Writer, Coach, Radio Host
I was having a problem sleeping. Herbal melatonin and 5HTP changed my life because they allowed me to sleep. For people who can’t sleep they can never heal well.
The other thing that really helped me the second time was to see my biofeedback. It helped me learn to control my response to external stimuli through deep, deep breathing and this is how I learned to control the constant fight or flight response.
What were the diet changes you made?
The first time I pretty much just got rid of all stimulants especially coffee and chocolate. They were making my symptoms worse. The second time I had to really start from scratch. I got rid of refined sugar and refined foods in general. I don’t eat wheat. I don’t drink alcohol. I eat a lot of super foods like spirulina. My hair fell out both times I got Chronic Fatigue Syndrome and I took spirulina to help it grow back. I eat a lot of cultured foods. I eat a lot of organic yogurt. Natural, unrefined, cultured and organic are the big areas I focus on with my diet. I don’t drink fruit juices. I don’t eat meat or chicken, but I eat seafood. Now I can tolerate regular milk. Protein is really important as it controls my blood sugar better. My diet has gotten much, much better over the years. I can tolerate some of Amy’s stuff. For the most part I eat fresh unprocessed foods. I had to learn to cook. It was a process that evolved. I had to practice the art of self care — nutrition, supplements and stress management. I learned a lot from biofeedback.
It is also about being aware of your boundaries so your mind feels safe. You need to practice teaching your mind that it is safe, so your body feels safe and your mind feels safe and you can unconsciously switch off the fight or flight response. I do deep breathing, yoga, Tai Chi, Xi Gong and walking exercises. I make it a priority to take care of myself and keep my stress down. It is about conscious living.
Explain deep breathing.
Deep breathing controls the nervous system and it can bring you back to where you can start to heal. It is essentially starting with your belly and breathing really slowly and rhythmically. You breathe in for three or four seconds all the way through your diaphragm and then you breathe out for the same amount of time. You want to get your body into a pattern of breathing slowly and deeply and this will calm your nervous system down which will trigger the relaxation response. The relaxation response is where people heal. You want to breathe deeply and slowly until you feel calm. That is harder for some than for others. Anxiety is common with people with Chronic Fatigue Syndrome.
The idea is to try and get people to do breath like this all the time, but it takes practice. Health itself is a practice. You want to practice it until you are automatically and unconsciously breathing this way. It sounds like too much, but after awhile your body will adjust.
What about exercise?
Sometimes people say they are too exhausted to exercise and that is why I recommend restorative exercise such as yoga or Tai Chi or Xi Gong or even walking. The point is to gradually move your body away from the illness.
How much of this did you discover through your own research or through the doctor?
A lot of it was my own research. The second time when I was diagnosed I saw an integrated doctor. I had an amazing experience with him. He listened to me for two hours and he finally looked up and said, ‘I think I know what is going on with you.’ He thought I was not detoxing properly. If you do not detox properly it can create a fatigue syndrome. That was a huge break through for me.
How did, ‘conscious living’ help you heal from Chronic Fatigue Syndrome?
Conscious living is about being aware of your thoughts and your mind and how you take care of yourself. It is about being as aware of your unconscious brain as possible so we do not let outside influences change us too much. People with sensitive nervous systems can be very affected by external stimuli. Conscious living is being consciously aware and making conscious decisions for our safety and our health. Some of it involves breathing. Some of it is nutrition. Conscious living is making self care a priority. I am conscious of what will and will not affect my body. I make conscious decisions about what I put in my body. I make conscious decisions about the people and the energy I let into my life. I am conscious about who I interact with. Conscious living is about the food you eat, the thoughts you think and the energy you put out.
Is there one thing that helped you more than anything else in curing your Chronic Fatigue Syndrome?
I would say self care was the most important which is a big umbrella, but by that I mean nutrition and conscious living and having boundaries with other people and myself. It is about taking care of my nervous system as well as nutrition and exercise. It is about taking care of myself physically, emotionally and keeping myself as calm as possible. I set terrible, terrible boundaries. My marriage is an example of that. On some level I knew he was an alcoholic and I married him anyways. That is not a good boundary. Out of that all of this chaos ensued.
What kind of doctors do you recommend for others with Chronic Fatigue Syndrome?
In my experience chiropractors and integrative doctors understand best. They are really aware of nutrition and stress and the awareness of all the components. Integrative doctors are MD’s with extensive experience in nutrition or they are naturopaths. You just need to have one initial consultation with them in person and then the rest can be via the phone. But you need a chiropractor or an integrative doctor that specializes in Chronic Fatigue Syndrome because if they are not experienced they might tell you that it is not real and it is horrible to be told that something you feel is not real.
What was the biofeedback component of this?
It is so amazing. I did what is called a HeartMath. They had me look at my heart rate and where my stress levels were. There were heart waves up and down on the screen and I had to match that with my breathing. Through this I became aware of my breathing and how important it is in controlling my stress levels. Once I became aware of that I was able to do it on my own. It is another thing I mean by conscious living. Conscious living is becoming aware of your body and your thoughts. It is really simple, but it has a really profound effect. Biofeedback made me aware of how much control I have over my body. It really takes me out of that victim mentality.
How is your Chronic Fatigue Syndrome now?
It is much better. Most days I am symptom free. If my symptoms start to flare up I know exactly what to do. A lot of days, like today, I feel normal. I have figured out what works for me to keep my body stable. I don’t feel exhausted anymore.
What do you do when your symptoms flare up?
I assess what is causing my symptoms first. Am I anxious? If so, what about? Have I practiced clear boundaries with people? Have I practiced boundaries with myself? What have I been eating lately? What have I been doing lately? I take Cellfood for energy, raw vitamins with acai, spirulina tabs, etc. I get some moderate exercise like walking or yoga to get or stay calm and move adrenaline out, eat well, go to bed early, and tell myself I am okay, safe, calm, all is okay and all is going to be okay.
What are your thoughts what the stronger parts of Western medicine versus natural medicine?
I think both have their strong suits. With alternative medicine they treat the whole person and they do not try to treat or mask the symptoms. With naturopathy they believe that your body has an innate ability to heal itself. With Western medicine its strength is the science behind it. As an example, a lot of time they say that people with Chronic Fatigue Syndrome have adrenals that are fatigued, but that is actually not scientifically possible. So sometimes with natural medicine they only look at part of the story. That is an example of where modern medicine is strong. With Western medicine they can save lives with surgery which can’t happen with natural medicine. I think these days with chronic lifestyle diseases as they call them, they should be treated through lifestyle changes. I am not a fan of medicine, the modern medicine quick fix, but sometimes it can save lives.
Is there anything else you would like to add?
I would say don’t ever give up on yourself. Your body can feel better. Practice patience. People recover all the time.