What is Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome (CFS) is a mystery illness having no known cause, or cure. It is estimated that 800,000 to 1,000,000 people suffer with CFS in the United States alone. Tens of millions more have similar fatiguing illnesses but who do not meet the strict definition of CFS. People of every age and gender are afflicted, though women are 4 times more likely to get it than men, and most are in their 40’s and 50’s.

This is a difficult illness to diagnose as there are no diagnostic lab tests and no outward physical signs. Current research is focused on the immune, endocrine and nervous systems. My doctor has suggested that there may be a connection to a virus, such as Epstein Barr or Mononucleosis – it lies dormant in the body until stress or illness reactivates it, then the immune system becomes overwhelmed and eventually causes adrenal burnout also known as adrenal fatigue, hormone imbalances, etc leading to a multitude of debilitating symptoms.

In order to receive a medical diagnosis of CFS a patient must satisfy two criteria:

1. Have severe fatigue of 6 months or longer
2. Have four or more of the following:

• Impairment of short term memory or concentration
• Sore throat
• Joint pain without swelling or redness
• Tender lymph nodes
• Muscle Pain
• Headaches different from those usually experienced
• Unrefreshing sleep
• Post-exertional malaise lasting more than 24 hours

According to the CFIDS Association of America:
 

“Although its name trivializes the illness as little more than mere tiredness, chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS), brings with it a constellation of debilitating symptoms.

CFIDS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period.

The symptoms of CFIDS are highly variable and fluctuate in severity, complicating treatment and the ill person’s ability to cope with the illness. Most symptoms are invisible, which makes it difficult for others to understand the vast array of debilitating symptoms with which people with the illness must contend.

Additional symptoms that have been reported by people diagnosed with CFS are: word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning., visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas); low-grade fever or low body temperature; numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); gynecological problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; mental fogginess; fainting; muscle twitching; and seizures. “

Before being given a diagnosis of CFS it is important to rule out other illnesses that have similar symptoms, such as:

• Lyme Disease
• Thyroid Conditions
• Diabetes
• MS
• Multiple Chemical Sensitivities
• Depression
• Allergies

If you suspect you have CFS but have not been diagnosed, the CFIDS Association offers a questionnaire “Do I Have CFIDS?” on their website, www.cfids.org.

One of the most important things you can do if you suspect you have CFS, or have been diagnosed with it, is to find a good doctor or health care practitioner to work with you to create an individual treatment program for your specific needs. The CFIDS Association of America has a brochure available, “Choosing a HealthCare Provider” which you may find useful. Unfortunately doctors who have the time and patience to deal with this mystifying illness are few and far between – but they are out there, so don’t give up if you don’t find one right away. My personal advice would be to exercise caution if your doctor recommends the use of prescription drugs to control your symptoms as many have side effects of their own and aren’t a long term solution anyway. I highly recommend you seek out alternative medicine practitioners who offer treatments such as acupuncture and other treatments that support and nurture the body – this will not only help in the short term by alleviating some symptoms, but help to rebalance and strengthen the body for more long term progress. I also hope you will find the information provided on this website (Jumpstart your Healing Steps, as well as the various treatment modalities listed in Learn About), helpful in guiding you to the many choices that are available to help you move forward on your healing journey.

As debilitating as CFS can be, do whatever you can to remain optimistic about your prospects for recovery. Many people recover completely, many others will improve enough to be able to fully enjoy life once again. It is very easy to feel alone, misunderstood, angry and sad. A good therapist can be a great help in dealing with the emotion that comes along with a chronic illness. Some people find comfort in joining a Support Group. Personally I do best when I surround myself with positive, uplifting people. But the one thing I have learned is that we are all unique – what works for one may not for another. If you are interested in finding a group in your area, the CFIDS Association will help, you can contact them at: supportgroups@cfids.org. The Center for Disease Control also provides tips and information about Support Groups: http://www.cdc.gov/ncidod/diseases/cfs/support/supus.htm.

The Mayo Clinic offers some good advice for self-care:

“Learning how to manage fatigue can help you improve your level of functioning and your quality of life despite your symptoms. You may work with a rehabilitation medicine specialist who can teach you how to plan activities to take advantage of times when you usually feel better."

These important self-care steps can help you to maintain good general health:

• Reduce stress. Develop a plan to avoid or limit overexertion and emotional stress. Allow yourself time each day to relax. That may mean learning how to say no without guilt. If possible, don't change your routine totally. People who quit work or drop all activity tend to do worse than those who remain active.
• Get enough sleep. Getting sufficient sleep is essential. In addition to allotting enough time for sleep, practice good sleep habits such as going to bed and getting up at the same time each day and limiting daytime napping.
• Exercise regularly. You may need to start slow and build up gradually. But exercising regularly often improves symptoms. Many people find exercises such as walking, swimming, biking and water aerobics to be helpful. A physical therapist may help you develop a home exercise program. Stretching, good posture and relaxation exercises also can be helpful.
• Pace yourself. Keep your activity on an even level. If you do too much on your good days, you may have more bad days.
• Maintain a healthy lifestyle. Try to eat a balanced diet, drink plenty of fluids, limit your caffeine intake, stop smoking, get adequate rest and exercise regularly. Find a hobby or career that is enjoyable and fulfilling for you. “

 Other Sources of Information

Jacob Teitelbaum, a medical doctor who personally suffered with CFS, wrote a book, From Fatigued to Fantastic, which provides lots of information and treatment protocols for those suffering with CFS and Fribromyalgia. You may find his website of interest as well: www.vitality101.com. Other sources of information include:

• The Center for Disease Control: www.cdc.gov/cfs
• CFIDS Association of America: www.cfids.org
• Mayo Clinic: www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395
• National Institute of Health: http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html
• Fibromyalgia and Fatigue Centers: www.fibroandfatigue.com
• The Environmental Illness Resource website (www.ei-resource.org) provides information and community resources for people suffering from CFS, Chemical Sensitivity and other chronic and disabling conditions.
• For an informative article on Fibromyalgia www.womentowomen.com.

The best advice I would give to anyone who receives a diagnosis of Chronic Fatigue Syndrome is to accept your circumstances, but do not give in to them. Recognize that something has occurred creating a state of imbalance in your body, and that this can be a temporary state of being. Love and support yourself so that your natural healing powers will be able to do their work. Do not think of yourself as “sick” but rather as a healthy person who is facing a temporary set-back. Keep the faith and hold on to hope. Continually remind yourself that good things are on the way, and they will be.

Healthy Edge Magazine: An Holistic Approach to CFS

This magazine had an interesting article about how to take a holistic approach to CFS. The author, Roon Frost, theorizes that CFS/FM acts as a circuit breaker disruption. The hypothalamus - which controls sleep, hormones, temperature, and blood flow/blood pressure/sweating - begins to lose its ability to protect the individual in the face of what is perceived to overwhelming stress (like blowing a fuse or tripping a circuit breaker). The energy crisis seen in CFS and Fibromyalgia can be caused ay a number of infections, stressors, or injuries, as well as by the many synthetic chemicals in our environment.

He goes on to report that because the affected systems vary considerably from patient to patient, most people with the condition need to have a combination of treatments tailored specifically to address their indiviual needs. Jeffrey Bland, PhD, who has led clinical research into CFS says, "No system of your body is more sensitive to toxic exposure than your immmune system. Nor is any system more dependent upon the quality of your diet. 70% of your immune system surrounds your gastrointestinal tract, helping to protect you from toxic substances produced during digestion." For immune support against viruses he recommends detoxification, rest, sound nutrition and in many cases, antioxidants and other supplements.

The recommendation for supplements are:

• Vitamin C (Ester C or buffered) 500 to 2000 mg
• Vitamin E 200-800 IU
• Selenium 100-200 micrograms
• Vitamin A 5,000-10,000 IU
• Carotenes 10-200 mg
• B complex High potency (3-10 x RDA)
• Coenzyme Q10 10-30 mg
• Magnesium 400-800 mg
• Zinc 15 mg

A number of doctors recommend using probiotics (see the HWH article, Digestion)to restore healthy gut function, also natural antifungals including oregano oil and grapefruit seed extract may be helpful. Some people can experience a form of low blood pressure, for which licorice root may help.

Garlic is a natural antibiotic with actibacterial and antiviral properties, and astragulus is an antiviral and an immunity enhancer.

Aromatherapy can help, too - lavender, tea tree, eucalyptus, bergamot, grapefruit and bay are essential oils that enhance immune activity while offering antibiotic properties according to Kathi Keville, an herbalist.

Try avoiding consumption of anything that can compromise immunity, such as dairy products, red meat, wheat, highly processed foods and those with sugar, aspartame or food additives, beverages containing alcohol or caffeine.

Dr. Andrew Weil (www.drweil.com) suggests exercise, "I recommend that people with CFS gradually work up to 20 to 30 minutes of aerobic activity at least 5 days a week. For some beginning an exercise regimen may mean only that you get out of bed and walk around the room...but that's a start!"

Note: From personal experience I can say that while exercise can be helpful, it is also important to follow your instincts...some days you can push a bit more than others. Honor yourself by doing the best you can in the moment. See Exercises for more ideas and information about Qi Gong and the Wuji (Stillness) Pose.

My Story by Jo Hainsworth

I was chronically ill for nearly 20 years. My health challenges began in earnest when I was 9 years old, and initially manifested as sinusitis, which was diagnosed by various doctors as chronic sinus infections. I was treated with antibiotics, and while the symptoms of the infections abated initially after each lot of antibiotics, my bouts with sinus infections became more and more regular. Many other symptoms started to creep in, and most of my teenage years were spent with chronic fatigue and a lot of pain throughout my body. In my 20’s, I had periods of time where I was unable to work for several months on end, because I was so fatigued and in so much pain that I wasn’t even able to muster sufficient energy to have a shower most days. While I never stopped searching for answers, and tried all manner of different natural and medical methods to heal, the lack of answers, coupled with the pain and fatigue, inevitably resulted in periods of depression.

After many visits to doctors, including various specialists, I was eventually lucky enough to come across a doctor who, while he was mystified as to how to help me, acknowledged that I was very ill and he was determined to find a way to help me. He referred me to another doctor who was also trained in naturopathic ways of healing who confirmed the diagnosis of Chronic Fatigue Syndrome (a.k.a. CFS/CFIDS/ME) and Systemic Candidiasis. This doctor was able to help me to get back to functioning enough to work, and to better understand the physical aspects of my illness.

Early in 2007, my health was relatively stable so long as I stayed on the restricted diet I had adopted. I was however keenly aware that the smallest thing could tip me over. Exposure to a small amount of agricultural chemicals had in the past resulted me not being able to get out of bed except to go to the toilet and to try to eat, for two weeks. Accidental exposure to foods that I appeared to be allergic to could result in me being very ill for days on end, even if I wasn’t aware that I had eaten any of the foods (on several occasions we only tracked down that I had eaten a substance I was reacting to after I had been ill for some days with the symptoms of an allergic reaction.) Filling up the car with petrol left me with a nasty headache for hours on end, and exposure to someone’s perfume could result in me feeling sick for hours too, so I tended to have to avoid enclosed spaces like elevators, and going to things like concerts or flying in aeroplanes were often problematic.

At that time I re-discovered a form of healing that I had previously been introduced to, but had written off as being mechanical and ineffective. The method is called EFT (Emotional Freedom Techniques), and involves a simple process of tapping on various acupuncture points on the body with you fingertips. Despite my initial scepticism and being sure that my allergic reactions were an inevitable result of the damage done to my immune system by the medication over the years, I decided to give EFT a go. It was a decision that I will always be very thankful for.

In three sessions, all less than an hour long, working with my partner who was also new to EFT and wanted to support me, using ideas we had picked up from reading about EFT and watching some EFT training DVDs, we got to the bottom of my life long battle with ill health. I was incredulous to discover that my problems had started at birth – when I was born with the umbilical cord wrapped several times around my neck and I was born in a very stressed state. If I had not experienced this myself, I would not believe that it was possible to heal so rapidly, with no side effects and minimal cost.

Now, 18 months on from doing those life changing EFT sessions, it’s hard to believe that I ever reacted the way I did. Long gone are the days where I couldn’t fill up the mower or car with petrol, because I would feel so incredibly unwell, and I have even occasionally been known to eat an entire pizza, followed by a desert (either one of which is a essentially a cocktail of many of my former allergens), and feel great doing so. Spring has become a season I can enjoy—in the past I avoided all flowers that had the potential to set me off with one of my reactions, and now I find myself deliberately placing my yoga mat near the flowers so I can enjoy them while breathing deeply with yoga. Where there were so many times I didn’t even have the energy to have a shower, I now live a very active life, exercising every day, and am full of energy.

I am living life with a sense of freedom that for so many years would have been unimaginable. I had no idea how much my feelings of being unsafe, that I had carried since my birth, had permeated my life, until I was released from the prison of those beliefs. It is just incredible, and something I will forever be thankful for. Where in the past, I for so long had the metaphor of myself as canary in the coalmine – alerting the world around me that what we are doing to the environment and our own bodies is not OK, the metaphor has now changed, and the canary is now out of the cage and flying free. Instead of seeing myself as weak and vulnerable, I now feel so healthy and strong that my entire self concept has changed.

Healing from my years and years of physical challenges has resulted in major changes in my life. I’m passionate about spreading the word about this amazing method, and keen to see people empowered to be using it for their own healing. I’m keenly aware that there are many people who have been unwell for some time who are not in the position to be able to afford to work with a practitioner, so I have recently written a book which is available to download free of charge from the Self Healing Portal*. If you, or anyone you know, may be able to be benefit from learning this amazing method of healing, please download and share the free e-book, called “You CAN Heal with EFT.”

~ Jo Hainsworth - www.selfheal4me.com

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