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Epstein Barr Virus (EBV), Fibromyalgia (FMS) and Chronic Fatigue (CFS)

I was diagnosed with the Epstein Barr virus, fibromyalgia, and chronic fatigue syndrome. This is my story.

Disclaimer: I am not a health professional. Please seek the advice of your doctor before you change your diet, exercise program, or any other aspects of your lifestyle.

Headaches and chronic pain in the joints are symptoms of fibromyalgia.

Headaches and chronic pain in the joints are symptoms of fibromyalgia.

My Personal Story and Diagnosis of Fibromyalgia

Back in the 1990s, I had two small children half of the time (I was divorced). I was taking one class at a time after work, and I was working an additional part-time job to help make ends meet. I continued this lifestyle for a couple of years.

Three times I had to quit my second, part-time job due to exhaustion and back or neck pain. I began risking my full-time job because of absenteeism and tardiness. I was rapidly losing weight. I was so frustrated. At 30 years old, why couldn’t I keep up with other people who worked two or more jobs?

In 1997, I went to the doctor due to complete and utter exhaustion. I was so tired all the time—no matter how much I slept. It got to the point where I would come home from work on a Friday afternoon and sleep until Monday morning, with an occasional visit to the bathroom and kitchen for water. My body ached. My head ached. Light and sound of any kind were completely unbearable and made the pain worse.

I realize this kind of sounds like a migraine, but it wasn’t. My doctor ran several tests and found the Epstein Barr virus (EBV) in my blood work. Anyone who has had mononucleosis has the EBV. It lies dormant at the base of the spine and can occasionally reactivate. However, it’s very rare for it to do so. However, I had no idea I'd ever had mononucleosis. It normally takes four to six weeks to recover from mononucleosis. During that time, rest and liquids are essential. I always pushed along when I was tired, until I couldn’t push any longer. That is when I went to the doctor.

Some days were better than others, but my condition slowly and progressively got worse. I went back to the doctor and was diagnosed with chronic fatigue syndrome (CFS). I was put on intermittent FMLA (Family Medical Leave Act) to protect my only job. I was given shots of B-12 on a regular basis, although that did not help the pain. Tylenol was my doctor’s recommendation for that. I finally saw a rheumatologist to rule out any joint diseases, and this doctor diagnosed me with fibromyalgia syndrome (FMS). At this point I was prescribed a narcotic for the pain, as well as an antidepressant.

Your life can become a downward spiral it you don't take the precautions your body needs to be as pain-free as possible.

Your life can become a downward spiral it you don't take the precautions your body needs to be as pain-free as possible.

Meaning of "Syndrome"

A syndrome is a condition that is characterized by a group of concurrent signs and symptoms.

Signs and Symptoms

Although there are no laboratory tests that can prove or disprove a FMS diagnosis, the doctor will know if FMS is a possibility if eleven of eighteen specific pressure points are tender or painful to the touch. You can see where these points are located on the diagram to the left. In addition to the points shown, my wrists and thumbs are affected as well. Once the doctor has completed a series of tests like blood work and CT Scans or MRIs to rule out any other possible disease or injury, he or she can diagnose FMS with confidence.

There are several symptoms. You may experience all of them or just some of them. They change often, which makes this syndrome so difficult to treat. Listed below are some of the symptoms I have suffered with:

  • dull achy muscles
  • sharp joint pain
  • exhaustion
  • disrupted sleeping patterns or lack of deep sleep
  • limited amount of physical energy, as if you have a small “reserve tank”
  • depression and anxiety
  • rapid weight gain and/or rapid weight loss
  • memory loss
  • headaches and migraines
  • light and sound sensitivity
  • constipation and/or digestive issues

Stigmas and Hypochondria

"Oh, just force yourself to get up and move! Everyone has pain sometimes, and we take a Tylenol and just work through it."

“Something is mentally wrong with you. Go see a psychiatrist and get some of those antidepressants so you can get over it.”

“You are just being lazy because you don’t feel like going to work. A lot of people don’t feel like going to work, but we get up and do it anyway.”

“It's all in your head. It’s a case of mind over matter.”

“You seem to be fine when you want to do something fun.”

These quotes are just a few statements I heard throughout my 15 years of suffering. It is difficult for those who haven’t experienced FMS, directly or indirectly, to understand that the pain and fatigue are not consistent. The pain moves to different areas of the body. The fatigue comes and goes. You may get a boost of energy and are able to conduct life as normal. Until your energy runs out and you crash so hard you cannot even lift your head up off of your pillow.

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Unfortunately, you cannot just force yourself to “get up” when you are having an episode of CFS. I have tried many times. One of two things will happen. You will throw up because your body is rejecting the stress. Or, you will black out or pass out from lack of strength, or both. It is extremely important that you listen to your body and only do what you can.

At times, you may feel as though you are losing your mind. Especially when you are told that what you are experiencing is not real, or everybody has it. Those that don’t understand will not validate your symptoms, treating you as though you are a hypochondriac. Don’t let anyone say those things to you. These are the times you need support, not criticism.

Possible Contributors

In my research, I have found several possible contributors to fibromyalgia syndrome. You may fit some or all of the following criteria:

  • FMS usually occurs in women, although men get it, too
  • It usually starts when the person is in their 30s
  • A previous accident that has caused physical trauma seems to be a common factor
  • A clinical depression diagnosis, from mild to severe, due to an imbalance of mood controlling chemicals in the brain
  • An Epstein Barr virus (mono) diagnosis
  • A chronic fatigue syndrome diagnosis
  • Irritable bowel syndrome (IBS) diagnosis
  • Current or previous autoimmune disease

More recently, the pain transmitters sending messages to the brain have been found to be exacerbated in the FMS patient. There is also a possibility that this syndrome is genetic.

Should I see a doctor?

For each question, choose the best answer. The answer key is below.

  1. If I'm tired all the time, I should...
    • nap more often
    • see a doctor to have blood work done
  2. If I can't sleep, I should...
    • try old fashioned remedies
    • see a doctor as soon as possible
  3. If I get a headache, I should...
    • take a tylenol and carry on
    • see a doctor as soon as possible
  4. If I'm nauseous all the time, I should...
    • take a pregnancy test
    • see a doctor as soon as possible
  5. If it hurts my shoulders when someone hugs me, I should...
    • see a doctor if it continues
    • shake hands instead
  6. If I don't feel like doing anything I usually enjoy, I should...
    • snap out of it and go anyway
    • see a doctor if it continues
  7. If I often feel sad for no reason, I should...
    • see a doctor as soon as possible
    • shrug it off, its probably just a bad mood
  8. If I just can't get up in the morning without feeling sick or weak, I should...
    • get a night job
    • see a doctor as soon as possible
  9. If I wake up with back pain, I should...
    • take a tylenol and go to work
    • see a doctor if it persists for three months
  10. If I haven't been able to sleep well for weeks, I should...
    • take sleeping pills
    • see a doctor as soon as possible

Answer Key

  1. see a doctor to have blood work done
  2. try old fashioned remedies
  3. take a tylenol and carry on
  4. see a doctor as soon as possible
  5. see a doctor if it continues
  6. see a doctor if it continues
  7. see a doctor as soon as possible
  8. see a doctor as soon as possible
  9. see a doctor if it persists for three months
  10. see a doctor as soon as possible

Pain-Relieving Techniques

Of course a sensible diet and moderate exercise are always beneficial whether you are healthy or not. As a general rule, try to stay away from anything white. White bread, potatoes, rice, pasta, flour and sugars tend to cause more pain in the joints. Whole wheat products are best.

Exercise moderately, but often, to build strength. Meaning, walk, stretch, bend, lift light weights, dancing, and swimming. However, always listen to your body. When you begin to tire, push a little more (maybe another ten seconds or so), then rest. It is important that you move every day, even if it’s just lifting your legs and arms in your bed.

Yoga, stretching, and breathing exercises are beneficial and help the body fight the fatigue and pain. Warm herbal baths sometimes help ease joint and muscular pain as well. You may try soothing music and aromatherapy to help you relax.

Light massage can provide comfort for the muscular aches. I have found from experience that even the softest touch on joints will cause excruciating pain, so be very careful and very specific if you choose to try massage.

Sometimes, heating pads and ice packs can be helpful depending on where the pain is and what type of pain you are experiencing.

Herbal remedies may be researched and used. However, please be sure your doctor is well aware of the therapies you are trying and how they are working for you.

Antidepressants and Ibuprofen with aspirin may provide some relief. It is sometimes recommended to use narcotics or medical marijuana in legally approved states. Please only use these as a last resort, and again, be sure you are closely monitored by your doctor.

There is Hope

There is Help and Support

There are many people who are going through what you are going through. Seek out counseling or FMS support groups. Listed below are a couple of websites you can access for local assistance. However, your doctor is the first person you should ask for help.