Discussions By Condition: Cancer

Epsein Barr, Fibromyalgia, Cancer? Neck Swelling. . do doctors actually have answers?

Posted In: Cancer 3 Replies
  • Posted By: Anonymous
  • October 15, 2009
  • 11:44 PM

I believe my symptoms started around age 8. Over a two year span I was seen by numerous doctors for knee pain (joint pain) and headaches. The only explanation my parents were given was growing pains.

At age 11 I was out of school for 5-6 weeks due to mono
All though high school I suffered from chronic fatigue, back pain, and it seemed that I was always sick. Although I have always been extremely smart, during high school I started noticing I was unable to focus on anything and often felt very ditsy. I was treated for depression and frequent UTIs. I don’t recall any other testing.

At age 17 I became pregnant with my oldest child on birth control. During pregnancy, I felt somewhat more energized and I was able to stay organized and had drive and energy to live life. Aside from typical pregnancy symptoms I felt somewhat normal.

Shortly after giving birth to my son, my symptoms came back tenfold. I started to experience extreme pain in my back and all over weakness and fatigue. After running some basic blood work I was diagnosed with Fibromyalgia and continued to have frequent UTIs.

I was given narcotic pain meds and anti depression medication to help with my symptoms but nothing ever helped. This continued for a couple years. I was unable to hold a job due to my daily struggles. My husband at the time was very unsupportive and told me that it was all in my head and that I needed to snap out of it and stop being lazy, which led to divorce.

While pregnant with my second child, again I felt much better.

Now 8 years after my diagnosis of Fibromyalgia I am taking a turn for the worse. My body is failing me more every day and I still have little answered. My ANA levels were abnormal in 2008 but now they are normal ruling out lupus, my Epstein Barr is positive, and my thyroid levels are normal.

Symptoms:

Fatigue
Joint Pain
Head Aches and migraines
Kidney pain
Frequent UTIs and other infections
Muscle Weakness
Low blood pressure
Sleeping 12-17 hours per day
Vision issues (delayed focus, twitching sensation)
Easily bruised
Sinus Pressure and face and jaw pain
Bloody mucus out of my nose dries and is very painful
Occasional rash (small scaly bumps over face and chest)
Memory Loss
Brain Fog
Slow speech (sometimes even slurred)
Dizzy
Black out upon standing
Sensitivity to cold

New Symptoms:

Pressure and Discomfort on lower left side of my neck with some swelling
Worsened headaches that never seem to go away
Worsened joint pain so severe that I have to wrap wrists and ankles with ace bandages for days at a time.
Loss of urine. I have actually peed my pants two times this week! And I am 26! I just got a sudden urge to go and didn’t make it in time. I couldn’t control it at all! Yuck!

I have been made to feel like I am crazy by my doctors and if it were not for my very supportive husband (married 2 years ago) I don’t know how I could even make it through a day.

My husband and I are very frustrated and on top of it all unable to get insurance due to pre existing conditions. So not only do the doctors think we are crazy but now they don’t want to treat me because I am not insured.
Our thoughts original following these new symptoms and the fact that i feel better during pregnancy were Thyroid disorder. But my doctor is saying that my thyroid levels are normal. When the Epstein Barr test came back positive it was a relief, hoping that it would explain all of my symptoms, but are finding that most of my symptoms don’t make sense. As bad as I want it to be something simple my heart tells me that it is not. After researching Epstein Barr, I have found that it is linked to some cancers such as nasopharyngeal cancer and other diseases. With Epstein Barr being the only thing I can go on or the only test that has some back positive I feel like this is the best place to start.

My question is with all the testing that they have done on my over the last decade wouldn’t some form of cancer been caught?

Why do I still not have a solid diagnosis?

Why do the doctors make me feel like I am crazy?

If anyone has any suggestions on what might be going on or any experiences you would like to share please post something. My husband and I are very frustrated and see no light at the end of this tunnel. I can’t continue to live my life from the couch.

Thank you for any help you can offer!

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3 Replies:

  • I believe my symptoms started around age 8. Over a two year span I was seen by numerous doctors for knee pain (joint pain) and headaches. The only explanation my parents were given was growing pains. At age 11 I was out of school for 5-6 weeks due to monoAll though high school I suffered from chronic fatigue, back pain, and it seemed that I was always sick. Although I have always been extremely smart, during high school I started noticing I was unable to focus on anything and often felt very ditsy. I was treated for depression and frequent UTIs. I don’t recall any other testing. At age 17 I became pregnant with my oldest child on birth control. During pregnancy, I felt somewhat more energized and I was able to stay organized and had drive and energy to live life. Aside from typical pregnancy symptoms I felt somewhat normal. Shortly after giving birth to my son, my symptoms came back tenfold. I started to experience extreme pain in my back and all over weakness and fatigue. After running some basic blood work I was diagnosed with Fibromyalgia and continued to have frequent UTIs. I was given narcotic pain meds and anti depression medication to help with my symptoms but nothing ever helped. This continued for a couple years. I was unable to hold a job due to my daily struggles. My husband at the time was very unsupportive and told me that it was all in my head and that I needed to snap out of it and stop being lazy, which led to divorce. While pregnant with my second child, again I felt much better. Now 8 years after my diagnosis of Fibromyalgia I am taking a turn for the worse. My body is failing me more every day and I still have little answered. My ANA levels were abnormal in 2008 but now they are normal ruling out lupus, my Epstein Barr is positive, and my thyroid levels are normal. Symptoms: FatigueJoint PainHead Aches and migrainesKidney painFrequent UTIs and other infectionsMuscle WeaknessLow blood pressureSleeping 12-17 hours per dayVision issues (delayed focus, twitching sensation)Easily bruisedSinus Pressure and face and jaw painBloody mucus out of my nose dries and is very painfulOccasional rash (small scaly bumps over face and chest)Memory LossBrain FogSlow speech (sometimes even slurred) DizzyBlack out upon standingSensitivity to cold New Symptoms: Pressure and Discomfort on lower left side of my neck with some swellingWorsened headaches that never seem to go awayWorsened joint pain so severe that I have to wrap wrists and ankles with ace bandages for days at a time.Loss of urine. I have actually peed my pants two times this week! And I am 26! I just got a sudden urge to go and didn’t make it in time. I couldn’t control it at all! Yuck! I have been made to feel like I am crazy by my doctors and if it were not for my very supportive husband (married 2 years ago) I don’t know how I could even make it through a day. My husband and I are very frustrated and on top of it all unable to get insurance due to pre existing conditions. So not only do the doctors think we are crazy but now they don’t want to treat me because I am not insured. Our thoughts original following these new symptoms and the fact that i feel better during pregnancy were Thyroid disorder. But my doctor is saying that my thyroid levels are normal. When the Epstein Barr test came back positive it was a relief, hoping that it would explain all of my symptoms, but are finding that most of my symptoms don’t make sense. As bad as I want it to be something simple my heart tells me that it is not. After researching Epstein Barr, I have found that it is linked to some cancers such as nasopharyngeal cancer and other diseases. With Epstein Barr being the only thing I can go on or the only test that has some back positive I feel like this is the best place to start. My question is with all the testing that they have done on my over the last decade wouldn’t some form of cancer been caught? Why do I still not have a solid diagnosis? Why do the doctors make me feel like I am crazy? If anyone has any suggestions on what might be going on or any experiences you would like to share please post something. My husband and I are very frustrated and see no light at the end of this tunnel. I can’t continue to live my life from the couch. Thank you for any help you can offer! Geez , felt as I was reading about myself. Have been at this much longer though. Hold on tight you are complicated for sure. My heart goes out to you. Am guessing, but seems most important detail may be ur improvement during pregnancy--have u checked for pituitary dysfunction. I don't know if pregnancy improves immune system but I think your diagnosis might be related. I had a sense of well-being during preg--it was shocking. 2nd thought is insideous low-grade chronic bacterial or fungal infection--childhood knees may be missed rhuematic fever or septic joints caused by un/under-treated strep throat. Swelling in neck could be same infection in open spaces... see "Actinomycosis of the Head and Neck"Any breast milk issues? Arm weakness. Daytime sleepiness/narcolepsy. Dental work/trauma/infection? Have read some stuff on genetic/syndroms being a factor. I wonder about Job's disease for you--if you read about this you'll see reference to frequent infections. As I step on my soapbox: You are made to feel crazy so doctors can feel sane while taking your money and showing u all results are "within normal limits" from all the inappropriate medical tests. IF researching, try to ignor all chatter about cancer, HIV and death...morbility rate(I think they call it). Cancer and HIV is where the money and cure-thrills are. And, I think anybody could give the appropriate diagnosis at autopsy/death...I have never seen a spleen but surely I could tell a bad one from a good one. I have post traumtic chronic osteomylitis since 1988 automobile accident causing facial dental injury. The pituitary dysfuction began in 1963. Have some of the same brain stuff(mine encephilitis) due to the auto accident. My Epstein-Barre is positive also--wonder why? Maybe ur immune system is in high gear, also. Have they tested it? I had mono in college(remember sore throat, lungs hurt and deep sleep day and night--all gone in about 3 or 4 weeks). Also have high ANA + CPR. Had misdiagnosis of Lupus and Lyme disease. Have hypergammagloblins--IgE over 6000 --very high. My CBC, WBC and SED rate are normal. My RA is negative but joint swelling + pain but not red or hot so refused biopsy. I have full insurance (pay over $6000 a yr for one person + additional $1500 in deductables. So far they are refusing to pay for needed tests(Fdg-PET Scan). Don't know what to do with this issue. Please reply. I will be thinking about u, hope I can be of some help. J
    knotAdoc 3 Replies
    • October 31, 2009
    • 04:00 AM
    • 0
    Flag this Response
  • Wow. You sound just like me. Can I ask what state you live in? I've been across the country and found only a handful of doctors who could give me answers that make sense. epstein-barr is directly related to the fibro. My story is like yours...achy as a kid, mono when i was younger, then random problems and symptoms that never made sense. Any web search of symptoms led me to believe I had leukemia or lymphoma or maybe lupus. No. It's all the fibro. I have had every single symptom you listed and I felt like an alien for years until I figured it out. Patients who have fibromyalgia w/ presence of epstein-barr and have ACTUALLy fallen ill (like mono) are the ones who consistently report the more severe symptoms of fibro. Our systems are forever changed by that darn virus that will never go away. The pregnancy made you feel better because of the hormones. The estrogen you were producing at the time eased the symptoms, and you went back to feeling like crap once the babies were born and you stabilized. Here's the truth: You will never be better...but you CAN feel better and LIVE better. I'm also interested in what your B vitamin retention is...out of all the lab work ups, mine always showed a dip. epstein- barr is a demon. BE grateful it hasnt manifested in leukemia...fibro is more managable and not deadly, although it feels like you will die from it on those rough days. Everyone is different, but let me tell you what has improved my quality of life tremendously:1) Step back. Reall determine if you can take some time...(2 weeks, a month even?) to let someone help you with your daily workload so you can do nothing but focus on your body. 2) Diet is everything. Avoid sugars, avoid alcohol, avoid nightshade vegetables (tomatoes, eggplants, bell peppers, etc)... there's a compound in them that adds to fibro pain (honest!) Eat organic when you can...load up on things that are green (naked juice green machine is great)...eat lean meat, easy on the dairy, etc.3) Move. I know it hurts, but you have to move. At the beginning of my journey, all I could manage was to get in the pool and move around...the water really eases the pain and takes pressure off achy joints and muscles. The increase in endorphins will make you feel a little better and give you more energy and before you know it, you'll be moving a lot better and easier and onto other excercise, which brings me to...4)YOGA. Saved me. I have never been a yogi. It's a Godsend to FM sufferers. Start out with the yoga practice called 'Restorative Yoga"...its very different from Vinyasa or Asthanga...its all about gentle stretches, increasing circulation and getting your mind quiet. it helps you sleep so much better at night. 5) Supplements. Get a B-Stress Complex, and Omega-3 supplement, magnesium, lecithin, and ginko biloba to start. valerian root (if u cant sleep). There's a brand of tea called 'Traditional medicinals' and they do just what they say on the package. There is one to help you sleep, one to calm you down, etc. They help, truly. So much can be achieved this natural way. I've tried every pharmaceutical in the book. This works better. Sometimes, I needed Cymbalta (which was the only drug that helped w/ pain over time) but for the last 4 months, I've been on this regimen without it and doing OK. 6) Massage/accupuncture/accupressure. One of these or all of them. I know its expensive, but think of it like medicine when youre in lots of pain. Depending on your area, you could join 'Massage Envy' where the membership is $39/mo. and included one free 60-minute session/month, and additional massages are $19 for 30 minutes, $39 for 60-minute, and $55 for 90 minutes. Accupuncture is also a good pain reliever. It's daunting at first, but so worth the results. It's baby steps...but this combination will do at least 3 things guaranteed: help you get restful sleep that energizes you instead of drains you, getyou moving again and with less pain, get your body's "natural" mood boosters to make you feel more like "you" than any pill ever will. Please know you are not alone. I know it feels that way from the couch, but you are NOT alone. More and more doctors are taking notice of this condition and more money is being poured into research every day...progress will come but until then, we've gotta do our best to take care of ourselves. The health insurance situation is almost unbeatable, as fibromyalgia has been added to the same list as AIDS and 'organ transplants' as uninsurable. Depending on what state you live in, you may qualify for disability payments given your condition...also, you mentioned you were diagnosed with FM a while ago...was it by a rheumatologist? In my experience, they seem to understand this a lot better than neurologists, GP's, etc. Also, utilize sites like these. There's a lot more information out there than there was even a year ago. I do like the National Fibromyalgia Association and think their magazine, Fibromyalgia Aware is a great resource. Their website also has a feature where you can find doctors near you who understand advanced FM (what i call FM w epstein-barr)There's nothing more important than your health. You cant do anything well when you are not well. You have to come first. You have to have the courage to fight to get your life back and get the chance to be who you really are. I know what its like to feel like youre being robbed from the inside...like your body is attacking you and no one can understand. Again...its not in your head and you are not the only one. All these things I outlined work in tandem. Diet. Movement. Meditation. Medication are the answers to living with fibro. If you have a medicine that works for you and you can afford, I say take it as long as this regimen. But if youre like me and nothing ever worked, you may want to try out the above and see how you feel. Treat yourself like a science experiment until you find the right rhythm and listen to your body. Dont be ******n yourself when you have a bad day...it happens. Slowly but surely the good will outweigh the bad. Lastly, I am from California and I will tell you that the medical marijuana did come in handy at the beginning of this journey. The trick is, it has to be sativa. Its not as popular as indicas (the weed people smoke for fun...makes you laugh, makes you sleepy)...but sativa has the opposite effect. its used to treat anxiety disorders, pain, panic, depression. I don't smoke, but was able to cook with it, put it in tea, etc. It was my "medication" portion before i was prescribed cymbalta and it worked. if you are in a green state and have never considered, its at least worth looking into. it doesnt make you a stoner. I really hope some of this helped, or at least let you know you are not alone and I promise there's light at the end of this tunnel...you'll see it from the other end when you get there. Good luck. If you have any questions/ comments/ need referrals or references I'll check this forum for the next few days. God Bless. It will get better. I believe my symptoms started around age 8. Over a two year span I was seen by numerous doctors for knee pain (joint pain) and headaches. The only explanation my parents were given was growing pains. At age 11 I was out of school for 5-6 weeks due to monoAll though high school I suffered from chronic fatigue, back pain, and it seemed that I was always sick. Although I have always been extremely smart, during high school I started noticing I was unable to focus on anything and often felt very ditsy. I was treated for depression and frequent UTIs. I don’t recall any other testing. At age 17 I became pregnant with my oldest child on birth control. During pregnancy, I felt somewhat more energized and I was able to stay organized and had drive and energy to live life. Aside from typical pregnancy symptoms I felt somewhat normal. Shortly after giving birth to my son, my symptoms came back tenfold. I started to experience extreme pain in my back and all over weakness and fatigue. After running some basic blood work I was diagnosed with Fibromyalgia and continued to have frequent UTIs. I was given narcotic pain meds and anti depression medication to help with my symptoms but nothing ever helped. This continued for a couple years. I was unable to hold a job due to my daily struggles. My husband at the time was very unsupportive and told me that it was all in my head and that I needed to snap out of it and stop being lazy, which led to divorce. While pregnant with my second child, again I felt much better. Now 8 years after my diagnosis of Fibromyalgia I am taking a turn for the worse. My body is failing me more every day and I still have little answered. My ANA levels were abnormal in 2008 but now they are normal ruling out lupus, my Epstein Barr is positive, and my thyroid levels are normal. Symptoms:FatigueJoint PainHead Aches and migrainesKidney painFrequent UTIs and other infectionsMuscle WeaknessLow blood pressureSleeping 12-17 hours per dayVision issues (delayed focus, twitching sensation)Easily bruisedSinus Pressure and face and jaw painBloody mucus out of my nose dries and is very painfulOccasional rash (small scaly bumps over face and chest)Memory LossBrain FogSlow speech (sometimes even slurred) DizzyBlack out upon standingSensitivity to cold
    Anonymous 42789 Replies Flag this Response
  • At age 17 I became pregnant with my oldest child on birth control. During pregnancy, I felt somewhat more energized and I was able to stay organized and had drive and energy to live life. Aside from typical pregnancy symptoms I felt somewhat normal. Shortly after giving birth to my son, my symptoms came back tenfold. I started to experience extreme pain in my back and all over weakness and fatigue. After running some basic blood work I was diagnosed with Fibromyalgia and continued to have frequent UTIs. that is what often happens in chronic fatigue immunity dysfunction syndrome (CFIDS). Many of us feel better during pregnancy but then crash with it after the birth. http://wwcoco.com/cfids/bernesx.html CFIDS is often confused with just fibromyalagia as most people (75%?) who have CFIDS also have fibromyalgia. One quarter of those who do start off having just fibromyalgia end up developing CFIDS. These are coexisting conditions but CFIDS patients get far more symptoms then those with fibromyalgia and the exhaustion is usually to a much greater degree then fibro eg exercise can often help fibromyaliga patients, but exercise in a CFIDS patient can be quite harmful and one needs to take great care with it. You need to find a doctor who specialises in this disorder as most doctors know very little about it and many actually give suggestions which make CFIDS patients worst. The black outs on standing with this condition.. are often caused by low BP or by postural orthostatic tachycardia syndrome. Both those conditions often coexist with it. Reincurring infections eg EBV are common with CFIDS (but not something which usually happens in fibro.. as i said..many confuse the conditions due to how often they overlap). 10% of those who get mono (EBV) end up going on and developing CFIDS.
    taniaaust1 2267 Replies
    • September 2, 2010
    • 07:13 AM
    • 0
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