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

Updated on May 3, 2017
Mmargie1966 profile image

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. | Source

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. | Source

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

Source

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.

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?

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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.

FMS and CFS can be overcome. By following your doctor's instructions, you may return to a "normal" life. However, these syndromes can return at any time, especially if you are ever injured.

As always, I certainly hope this was helpful and you are soon feeling your best.

"Be kind to one another." ~ Ellen

"God bless you." ~ Margaret Sullivan

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    • Mmargie1966 profile imageAUTHOR

      Mmargie1966 

      6 months ago from Gainesville, GA

      Also, may i recommend, take magnesium 2x a day, lavendar baths, and walkung (on good days) can be helpful. You may want to check out Social Security Disability.

    • Mmargie1966 profile imageAUTHOR

      Mmargie1966 

      6 months ago from Gainesville, GA

      Im so sorry to hear of your struggles. I was diagnosed in 1997, when nobody had heard of the disease. I was fortunate enough to have a doctor who was researching the topic. But, like you said, those who havent a clue think youre a hypicondriac. Here is a link that may be helpful for support:

      https://www.fmcpaware.org/support-groups/browse-su...

    • profile image

      Darcie Stammen, Phoenix 

      6 months ago

      I came across this information tonight and just want to cry. I live in Phoenix and having a hard time explaining to medical professionals my issues. All my issues started in the 30's and I will be turning 52 in Sept. I truly believe that the reason I cannot hold a job much longer than a year is due to all this pain, weird sleeping hours, and brain fog. A few years ago it got pretty bad with the pain and was trying to find solutions. Doctors thought I was a drug addict and looking to get opioids.

      I was laid off of work again two weeks ago. I am not married, not in a relationship, have no close friends or family here, other than my married daughter, and was told about two years ago by a coworker that I needed to quit looking for attention and that I was a hypochondriac. Right now I feel like I'm going crazy and find myself crying at any time for any reason.

      On top of all this I am in menopause and I am be treated. We are using as much as possible of the natural remedies with meds made at an apothecary pharmacy. My insurance ends on the 28th of February and have applied for state insurance which has already been denied. I have never asked for any financial assistance in my life, other than Unemployment Insurance. In Arizona, unemployment payments per week is a max of $240 a week. That does not pay the high rate of rent for apartment living. Now add food, car loan, auto insurance, electric, and your cell phone. Forget cable and internet, you will have to go into the apartment complex office and use their Wi-Fi.

      Lets add the increase in migraine activity. Unemployment requires active daily searching and applying for jobs; any job. Just because you were laid off due to company cutbacks does not allow forgiveness of not trying for that $10 an hour job when you have been making $45k to $60k a year.

      I am happy to see the information about in person or online support as I'm tired of rehashing past experiences and all that other garbage when what I need is to be understood with this "syndrome" and the support and information to move forward on a daily basis. Whether its just to get out of bed and shower.

      Now that I've ranted, I wanted to state that I suffered "mono" in my preteens. My father suffered from Shingles and my children's father had Shingles in grade school.

      My daughter, at about 10 months of age, and I somehow ended up Scarlet Fever. My son was a toddler when we had to potty train him due to some sort of eczema on is but that was the size of my hand. In grade school it returned on his hands forearms by the elbows. And then suddenly, no issues at the age of 28.

      Reading other info yesterday, I came across info about Fibromyalgia, due to the digestive issues, can be related with a gene deficiency known as MTHFR. The GYN that I see is the one my daughter dragged me into see. This doctor is the one that found this mutation in my daughter, AFTER HAVING HER DO A INTENSIVE DETOX PROGRAM. Now my daughter is not suffering the issues with her periods, and the detox uncovered a thyroid problem. She had been tested about a dozen times in a two year period for thyroid issues but it was being masked. To confirm the MTHFR she did have to pay for genetic tests to confirm. Lasting, 20 years ago my brother became very ill and it took 5 years for doctors to discover he suffered from Hemochromatosis, the form that is by hereditary. I was recently tested, I am a carrier. I am undergoing more tests in relation to Marfan Syndrome as MRI'S show I have two aneurysms; aorta just below the heart and in right carotid. I have suffered TIA's, mini strokes. About 12 since 2000. Some are extreme enough to make me look, act, talk as if I've have too much alcohol.

      That's my story. I apologize to all for the length but I am in need to find the proper care with the issues at hand. Yes, I am clinically depressed and taking medication. I keep going because if I had stopped, I would have missed out on the lives on my two beautiful, awesome kids I gave birth to...

      Thank you! Bless you all for your struggles and to keep marching on.

    • profile image

      Megan 

      14 months ago

      Foods high in arginine and low in lysine will cause EBV or other herpes virus replicate. To help manage pain eat foods with a higher lysine and lower arginine content. I suffered from glandular fever @ age of 13 and was in a coma for a week ~ since then I have suffered chronic neck and lower back pain, migraines, gut issues, food intolerances and allergies, R.A., chronic dermatitis on my hands, etc. Diet has been a key to managing pain.

    • profile image

      VICKY 

      19 months ago

      READ THE BOOK MEDICAL MEDIUM BY ANTHONY WILLIAMS AND YOU WILL UNDERSTAND EVERYTHING !!!

    • profile image

      karen 

      23 months ago

      This is spot on. I had a 'flu' that seemed to kick in the permanency of Fibro Symptoms. All reactions went away except the extreme tiredness, aches, pains and super-sensitivity. I have been doing Bikram Yoga (every other day) for 6 years now and it helps. Also trying the Melt Method before bedtime. Have heard great feedback from other friends.

      https://www.meltmethod.com/?gclid=CPKHmtfB2M8CFQIo...

    • profile image

      Sharon 

      23 months ago

      It looks like a lot Lyme desease to me. Many people with Lyme deseases have EBV and the same symptoms.

      Good luck

    • profile image

      Carol Hamer 

      23 months ago

      This sounds like the story of my life, but thankfully I am now 76yrs. old, and feel like I have fought and conquered the battle. One has to take charge of their health and well-being, and pursue what they think works for them. Often times I felt like I was educating the doctors. I also battled migraine headaches for 50 yrs. Support groups were never my solution, and medications were not either. In fact, I am allergic to most pain killers. My faith, my family, and my strong constitution is what kept me pressing on. I was determined that my illnesses would not negatively effect those I love. Without God, and a strong group of Christian friends, I wouldn't have been able to push through. Currently I am caring for my husband who is terminal with cancer. We have had him with us 8-1/2yrs since his diagnosis of cancer in both lungs. God is good!!

    • profile image

      Anette 0416 

      2 years ago

      Hello to everyone!

      I just stumbled across this article, and the feedback and support given to one another. I have been diagnosed with Fibromyalgia, Chronic Pain, Migraines, Degenerative Disc and Joint Disease, Osteoarthritis, Insomnia, Nausea Fatigue, and the list goes on and on.

      I'm been to numerous specialists but, they all seem to focus on one area. I'm taking so many medications that i feel like I'm a toxic waist dump. My members don't understand. Friends think that you are ignoring them.

      I keep reading to keep myself informed, and to pass on to family and friends.

      Like most of you, I've heard all the same quips.

      I did loose my job, with the statement from the manager, stating that I could not fulfill the requirements of my position.

      I apologize for writing a book. When I talk to others, I get a blank look from them. This is my first time ever to reach out in a support group setting. Thank you for reading my story.

      Anette

    • Susan Trump profile image

      Susan Trump 

      3 years ago from San Diego, California

      Keep talking about it. I write about it too and believe the search is for the cause and the cure will follow. It can be cured.

    • Mmargie1966 profile imageAUTHOR

      Mmargie1966 

      4 years ago from Gainesville, GA

      You are not alone, Shell! Just keep your head up, do the best you can, and take care of yourself. You'll learn to manage it. (((Hugs)))

    • profile image

      shellcaseb 

      4 years ago

      Thank you so much for writing this. The things that were said to you have been said to midday of us.If not said out loud then they were deeply implied. I am in no way suicidal, I don't want anyone thinking that when I say what I'm about to say. I really think that suicide is something that seems like a way to not only relieve the pain but also the ridicule from paramedics on to doctors. I've seen and heard Fibromyalgia jokes with eye rolls from both. Fibro patients are considered a waste of time, Fibro patients only fake pain to get narcotics. Fibro patients were clogging up our emergency room. My husband is wonderful but he still doesn't get it. No one does unless they are living it. Your best friend wont get it, they will get aggravated and think you are lying about being tired. Sorry for being a Debbie Downer, this is the only place I can say how I really feel. Thank you for listening.

    • Mmargie1966 profile imageAUTHOR

      Mmargie1966 

      5 years ago from Gainesville, GA

      Thank you so much for your kind words and advice, Jodes! I wish you well.

    • profile image

      Jodes 

      5 years ago

      This was one of the more helpful, accurate and positive hub that I have found - and I've read a lot. My neck/migraine headaches that sometimes travel to my shoulders are there nearly every day. However just recently I've been relieved from them with a drug called Endep 10mg. It doesn't take all the body and joint pain away or the headaches but mostly does and it does wear off towards the end of the day. But it really has slight side effects so I will take anything that helps! I have Ross River Virus too and therefore have been diagnosed with fibromyalgia so my symptoms are a little garbled. My thoughts are don't give in or give up. Listen to your body. Be kind to yourself. Mother yourself. Rest and find a good trained listening doctor. Try something until it works or at least helps. Lots of fruit and veg and protein. Look at spirulina, taking heavy foods out of your diet - anything fried. Too much red meat. Definitely no to alcohol. Don't drive or work if you aren't capable and accept this is me for now - until I get better or find a healthier me. Stay positive and keep the positive supportive people around you. :)

    • profile image

      Darla Bethea 

      5 years ago

      One of the best books that helped me "through" was by Devin Starlanyl, a doctor who has studied fibromyalgia and chronic pain syndrome on the cellular level, "Fibromyalgia & Chronic Myofascial Pain A Survival Manual". It is written to easily understand, not a "dr manual" and has so many helps you would never be able to try them all. But sometimes what works for one, doesn't for another. For some yoga is too repetitious and causes more pain, but the gentle stretching is very good for me.

    • Mmargie1966 profile imageAUTHOR

      Mmargie1966 

      6 years ago from Gainesville, GA

      I hope you find some relief, Christy! Thank you for your comment :)

    • profile image

      CC 

      6 years ago

      Thanks Margie, this was very helpful. LOL Christy

    • Mmargie1966 profile imageAUTHOR

      Mmargie1966 

      6 years ago from Gainesville, GA

      I am so sorry you are experiencing so much pain, emilybee! I think you should see the specialist. (Probably a Neurologist) You may consider seeing a Rheumatologist as well. (Joint doctor). I hope you are feeling better quickly.

      Please keep me posted.

    • emilybee profile image

      emilybee 

      6 years ago

      I think I've read this hub before, but I just found it again after seeing your response to a question on this topic. Ironic, I was just talking to someone today about Fibromyalgia. I have migraines at least every other day, usually every day, just varying on how extreme. I've been tested and nothing was found: I was told I'm normal. Today I said, but having migraines everyday cannot possibly be normal. When I did get tested a while ago (lots of blood tests-very expensive) my doc referred me to a specialist- forget exactly, but I think someone specializing in brain stuff- I also have pain a lot and I'm young!!! Early 20's and I do not feel it and also back aches like crazy. Your hub was very informative and helpful, not sure what to do next. I may go to that specialist because I don't want to take pain meds every day for headaches! Hope you are doing well and feeling alright :-)

    • Mmargie1966 profile imageAUTHOR

      Mmargie1966 

      6 years ago from Gainesville, GA

      Oh Dave, I pray for a speedy recovery...or managability. I hope I helped in some way.

      God Bless you...I know the feeling!

      Your friend...

      Margie

    • CyberTech15 profile image

      CyberTech15 

      6 years ago from Michigan

      WOW what a great HUB!! I have Firbo and a bunch of other nice things going on with me. This Hub did help me out! The Doctors want to send me to a big Major Hospital for further testing. They are confused with what is happening to me, on is my CPK blood level runs from 750 to 1050. I will read your HUB a few times again. The "Fog" I have today is a bit thick.

      Dave

      www.alanmartstore.com

    • Mmargie1966 profile imageAUTHOR

      Mmargie1966 

      6 years ago from Gainesville, GA

      Thank you, CWBob. Your kind words are appreciated!

    • Civil War Bob profile image

      Civil War Bob 

      6 years ago from Glenside, Pennsylvania

      Well done Hub, Mmargie1966...voted up, useful, interesting, and beautiful. I learned a good bit in just a few minutes! May you find relief from the symptoms of the Fibromyalgia!! My best friend has skeletal MS, Eppstein Barr, and Lupus, so I get to help him out a bit as needed. You'll see my world-life view in my Hubs, so I'll simply say grace, strength, and peace to you! Bob

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