Hope for People with CFS/ME and Fibromyalgia
If you are suffering from Chronic Fatigue Syndrome or Fibromyalgia, there is hope; a way to bring your body back into balance. I tried many treatments in the struggle to rid myself of CFS. Some worked, others did not. Each step took me closer to health and to what became a richer and more meaningful life.
CFS and FMS present differently in each individual, there is no one known cause or cure, and the road to health varies from person to person.
Here is my story, the journey I took and the lessons I learned. I offer in the hope that it will help you.
In 1986, I was looking for a primary care physician and got a recommendation to go to Dr. Jeanne Hubbuch, an MD who practices integrative medicine and specializes in Chronic Fatigue Syndrome. Little did I know how important this would be, since I had no idea that years later I would suffer from CFS.
Lesson One: Do not overlook the role of serendipity in life. I do believe that the things we need are closer to us than we can imagine. Trust that you will find the people that you need.
In 1990, after a year of catching several viruses, I had a sore throat, low-grade fever, muscle aches and fatigue. A walk across a room became an exercise in exhaustion. Lying in bed, I called Dr. Hubbuch, who said that she thought I had Chronic Fatigue Syndrome, and that I should come into the office so that we could run tests to rule out any other diagnosis. In 1990, most doctors did not know that CFS existed. I was blessed to have a doctor who understood the illness.
I was working as a technical consultant for a company that sub-contracted with the Environmental Protection Agency. It was a new job, and I found myself falling asleep during meetings, calling in sick every few days and throwing up into trash cans at work. I told the company that I had Chronic Fatigue Syndrome. They decided to send me to a specialist, Dr. Anthony Komaroff, to have the diagnosis confirmed. Dr. Komaroff was very kind and understanding and concurred that I had CFS. He wrote a letter to the company telling them to allow me to get the care that I needed. Over a decade later, by some quirk that I don't completely understand, I found myself working for Dr. Komaroff and was able to thank him for the kindness that he showed me.
Lesson Two: Get a diagnosis. This narrows the path of treatment and can help you understand what is going on in your body. It also gives you suggestions as to what interventions might be helpful.
I was unable to stay at my job, and I thought that high tech might not be the best field for me. An acquaintance recommended acupuncture treatments to help with CFS. I went and liked the treatments. I could actually feel energy moving in my body. But I was still pretty sick. It occurred to me, however, that here was a profession where I could help people, run my own business and study a branch of medicine that has been around for 3,000 years. I was in a pretty lost place and acupuncture offered a way of finding myself again. I enrolled at the New England School of Acupuncture and had a renewed purpose in life.
Lesson Three: Find your purpose. Even in the midst of illness, you have a gift. Use it to the extent of your ability.
The illness waxed and waned. I would go through many months without any symptoms only to have them return. I tried everything I could get my hands on: herbs, homeopathy, nitroglycerin, shots of vitamin B12, intravenous vitamin C, special diets and nutritional supplements. None of these helped me, although they may help you. I found that I had to listen to my own body and through a system of trial and error find health.
Lesson Four: Commit time, money, and the precious amount of energy that you have to getting healthier. If you have a chronic illness, part of your life's purpose is to learn how to live with it and to heal. I know that you didn't choose this, but it has become part of your path.
There were two treatments that I found helpful. Subcutaneous injections of Iscador, an extract of European mistletoe, kept me symptom-free for a year. After that time, I started to feel wired and had to stop taking it. Photo Oxidation Therapy, where a small amount of my blood was removed from my body and exposed to a certain wavelength of ultra-violet light and then returned to my bloodstream, lifted the fatigue, cured the sore throat and left me feeling healthy. When I first heard about this treatment, one of the few remaining ones that I had not yet tried, I was very upset. I went to see an afternoon showing of the movie "The Horse Whisperer" and spent two hours crying in what was fortunately an empty movie theatre. It took me a full year before I was willing to try this treatment. While it did work, it also affected my sleep pattern. I started waking up at 4 am and decided that I would not use Photo Oxidation in the future.
Lesson Five: Some things may work for a little while but not forever. Be willing to try anything that is not harmful and continue to reassess whether it makes a difference for you.
Each treatment, successful or not, led me closer to health. I learned about myself and paid attention to what my body was telling me.
I kept up my weekly acupuncture visits, a time when I could be in my body and rest. I wasn’t cured, but I was functional. I pushed myself during the week and crashed on the couch on weekends. I learned to override the fatigue and also to limit my activity. And finally I did graduate from school and pass the acupuncture licensing exam.
I cannot emphasize enough the role of acupuncture in my life. Not only did treatments give me more energy, the philosophy behind Oriental Medicine gave me a new way to look at life. I grew up in an achievement oriented family. Success was defined by goals accomplished, good grades and professional status. Eastern philosophy, on the other hand, stresses the importance of balance. I realized that even if didn't become completely healthy, I could always do something to bring greater balance into my life. This idea changed me on many levels and informs the work that I do today.
Lesson Six: Find your balance. Put the energy that you have into what is most important to you -- a profession, a relationship, a hobby -- and let go of the things that no longer serve you. People with CFS and Fibromyalgia do accomplish things. Read about Laura Hillenbrand for inspiration. Also, remember that you don't have to be famous to do something that you love.
I remember my last bout with CFS. On a beautiful autumn day, I took a canoe trip on the Concord River. It was peak leaf-peeping season and the reflection of the trees in the water was magnificent. I still remember the day now, more than 15 years later, but there was a price to pay. The exhaustion and sore throat returned.
A week or two later, I went to Wickford, RI, to get away for a weekend. It rained and I could barely get myself outside of the B&B where I was staying. I decided to go into the small town, where I found a herbal shop. I went inside and told the shop keeper that I had CFS and asked if she had any recommendations. I was surprised when she said that she also had the illness and was taking a supplement called NADH, a naturally occurring chemical that produces energy in our cells. NADH is sold in most health food stores, and I started to take it each morning.
Around the same time, I noticed that there was a seasonable component to my illness. I tended to do better during the summer. Although I was not suffering from depression, I invested in a 10,000 lux bright light – the kind used for seasonal affective disorder. I started sitting in front of the light for a half an hour each morning after taking the NADH supplement. I continued this treatment for a year. The illness subsided and has never returned.
Lesson Seven: Reach out to people and places that understand what you're going through and can offer help. Think outside the box. Take the wisdom of all the different medical traditions. Help can come in unexpected ways.
I wish I could tell you that I discovered a cure for CFS and Fibromyalgia. Instead, I found that by listening to my body, I was able to find treatments that helped me.
Lesson Eight: Don't give up. You will get discouraged. I know because I have been there. But stay on the journey. Illness is a powerful teacher.
CFS changed my life for the better in ways I could not even imagine. It gave me a new way to look at the world, a new profession and a better outlook on life. May you learn from life's imperfections. Know that I am on your side.
Note: Please do not substitute this information for medical advice. If you have an illness, it's important that you see a medical professional.
CFS and FMS present differently in each individual, there is no one known cause or cure, and the road to health varies from person to person.
Here is my story, the journey I took and the lessons I learned. I offer in the hope that it will help you.
In 1986, I was looking for a primary care physician and got a recommendation to go to Dr. Jeanne Hubbuch, an MD who practices integrative medicine and specializes in Chronic Fatigue Syndrome. Little did I know how important this would be, since I had no idea that years later I would suffer from CFS.
Lesson One: Do not overlook the role of serendipity in life. I do believe that the things we need are closer to us than we can imagine. Trust that you will find the people that you need.
In 1990, after a year of catching several viruses, I had a sore throat, low-grade fever, muscle aches and fatigue. A walk across a room became an exercise in exhaustion. Lying in bed, I called Dr. Hubbuch, who said that she thought I had Chronic Fatigue Syndrome, and that I should come into the office so that we could run tests to rule out any other diagnosis. In 1990, most doctors did not know that CFS existed. I was blessed to have a doctor who understood the illness.
I was working as a technical consultant for a company that sub-contracted with the Environmental Protection Agency. It was a new job, and I found myself falling asleep during meetings, calling in sick every few days and throwing up into trash cans at work. I told the company that I had Chronic Fatigue Syndrome. They decided to send me to a specialist, Dr. Anthony Komaroff, to have the diagnosis confirmed. Dr. Komaroff was very kind and understanding and concurred that I had CFS. He wrote a letter to the company telling them to allow me to get the care that I needed. Over a decade later, by some quirk that I don't completely understand, I found myself working for Dr. Komaroff and was able to thank him for the kindness that he showed me.
Lesson Two: Get a diagnosis. This narrows the path of treatment and can help you understand what is going on in your body. It also gives you suggestions as to what interventions might be helpful.
I was unable to stay at my job, and I thought that high tech might not be the best field for me. An acquaintance recommended acupuncture treatments to help with CFS. I went and liked the treatments. I could actually feel energy moving in my body. But I was still pretty sick. It occurred to me, however, that here was a profession where I could help people, run my own business and study a branch of medicine that has been around for 3,000 years. I was in a pretty lost place and acupuncture offered a way of finding myself again. I enrolled at the New England School of Acupuncture and had a renewed purpose in life.
Lesson Three: Find your purpose. Even in the midst of illness, you have a gift. Use it to the extent of your ability.
The illness waxed and waned. I would go through many months without any symptoms only to have them return. I tried everything I could get my hands on: herbs, homeopathy, nitroglycerin, shots of vitamin B12, intravenous vitamin C, special diets and nutritional supplements. None of these helped me, although they may help you. I found that I had to listen to my own body and through a system of trial and error find health.
Lesson Four: Commit time, money, and the precious amount of energy that you have to getting healthier. If you have a chronic illness, part of your life's purpose is to learn how to live with it and to heal. I know that you didn't choose this, but it has become part of your path.
There were two treatments that I found helpful. Subcutaneous injections of Iscador, an extract of European mistletoe, kept me symptom-free for a year. After that time, I started to feel wired and had to stop taking it. Photo Oxidation Therapy, where a small amount of my blood was removed from my body and exposed to a certain wavelength of ultra-violet light and then returned to my bloodstream, lifted the fatigue, cured the sore throat and left me feeling healthy. When I first heard about this treatment, one of the few remaining ones that I had not yet tried, I was very upset. I went to see an afternoon showing of the movie "The Horse Whisperer" and spent two hours crying in what was fortunately an empty movie theatre. It took me a full year before I was willing to try this treatment. While it did work, it also affected my sleep pattern. I started waking up at 4 am and decided that I would not use Photo Oxidation in the future.
Lesson Five: Some things may work for a little while but not forever. Be willing to try anything that is not harmful and continue to reassess whether it makes a difference for you.
Each treatment, successful or not, led me closer to health. I learned about myself and paid attention to what my body was telling me.
I kept up my weekly acupuncture visits, a time when I could be in my body and rest. I wasn’t cured, but I was functional. I pushed myself during the week and crashed on the couch on weekends. I learned to override the fatigue and also to limit my activity. And finally I did graduate from school and pass the acupuncture licensing exam.
I cannot emphasize enough the role of acupuncture in my life. Not only did treatments give me more energy, the philosophy behind Oriental Medicine gave me a new way to look at life. I grew up in an achievement oriented family. Success was defined by goals accomplished, good grades and professional status. Eastern philosophy, on the other hand, stresses the importance of balance. I realized that even if didn't become completely healthy, I could always do something to bring greater balance into my life. This idea changed me on many levels and informs the work that I do today.
Lesson Six: Find your balance. Put the energy that you have into what is most important to you -- a profession, a relationship, a hobby -- and let go of the things that no longer serve you. People with CFS and Fibromyalgia do accomplish things. Read about Laura Hillenbrand for inspiration. Also, remember that you don't have to be famous to do something that you love.
I remember my last bout with CFS. On a beautiful autumn day, I took a canoe trip on the Concord River. It was peak leaf-peeping season and the reflection of the trees in the water was magnificent. I still remember the day now, more than 15 years later, but there was a price to pay. The exhaustion and sore throat returned.
A week or two later, I went to Wickford, RI, to get away for a weekend. It rained and I could barely get myself outside of the B&B where I was staying. I decided to go into the small town, where I found a herbal shop. I went inside and told the shop keeper that I had CFS and asked if she had any recommendations. I was surprised when she said that she also had the illness and was taking a supplement called NADH, a naturally occurring chemical that produces energy in our cells. NADH is sold in most health food stores, and I started to take it each morning.
Around the same time, I noticed that there was a seasonable component to my illness. I tended to do better during the summer. Although I was not suffering from depression, I invested in a 10,000 lux bright light – the kind used for seasonal affective disorder. I started sitting in front of the light for a half an hour each morning after taking the NADH supplement. I continued this treatment for a year. The illness subsided and has never returned.
Lesson Seven: Reach out to people and places that understand what you're going through and can offer help. Think outside the box. Take the wisdom of all the different medical traditions. Help can come in unexpected ways.
I wish I could tell you that I discovered a cure for CFS and Fibromyalgia. Instead, I found that by listening to my body, I was able to find treatments that helped me.
Lesson Eight: Don't give up. You will get discouraged. I know because I have been there. But stay on the journey. Illness is a powerful teacher.
CFS changed my life for the better in ways I could not even imagine. It gave me a new way to look at the world, a new profession and a better outlook on life. May you learn from life's imperfections. Know that I am on your side.
Note: Please do not substitute this information for medical advice. If you have an illness, it's important that you see a medical professional.
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