fibro misdiagnosed

[lnh31]

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.

[b]Symptoms:[/b]
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

[b]New Symptoms:[/b]
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!

[meubanks09]

I am so sorry to hear about your problems. I am also a young mother (23) with 2 children ages 18 months and 4. I two have had problems with Chronic Fatigue and loss of concentration, joint pains, muscle aches since I was young.. they were very mild and my parents were told they were " gorwing pains" I also had a lot of muscle cramps and charlie horses that were soo painful as a child/teen. I also had heart palpitations, but the doctors tested me and indicated it was just growing pains, and possible stress and maybe i was drinking too much caffine. LOL . I too was very intelligent and did great in school.. but felt like I couldnt keep up physically, and it was mentally exaughsting

At age 13 I came down with a bad case of ( what they thought) was mono. They never really confirmed, I was sick for a little over a month. .. I was also had a large bite looking thing on my leg that appeared when I was 17.. no recollection of being bit by a tick. I went to the doc and was told it was spider bite that got infected... but now looking back, it was a classic bulls-eye deer tick bite that can cause LYME DISEASE.

I was never tested for it then, but was recently and it came back negetive. I still wonder if all that had something to do with my pains now, or if my FIBRO is really something else ..?

[dustybrown]

You mentioned you were tested for Thyroid. Did they just run the TSH and that's it? You could have Autoimmune thyroid, which they wouldn't detect in the routine thyroid testing. They need to perform the TSH plus the Antibodies, and the FT4, FT3. Perhaps you do indeed have a thyroid problem. Insist to your PCP doctor that you are concerned that you may have an autoimmune thyroid condition- ask to be referred to an endocrinologist if necessary- lie and say it's in your family if you have to. I know a friend of mine had to just to get the testing done, which sounds completely ridiculous, but it's what you have to do these days to get properly treated. Doctors aren't to be trusted. That is for sure.  

[lnh31]

My honest oppinion is that fibro is a cop out diagnosis. I think doctors diagnose people with it when they dont know what the patient has and dont want to test anymore. It is very important to have a support system and try as hard as you can to not let them get to you. For I long time I felt crazy because they kept telling me there was nothing wrong with me and still do. Your not crazy, your symptoms are real and you need to keep pushing your doctor to find out what is really going on. If they dont listen then get a new dr.

I know what your going through. Stay on the forums. They help me a lot. Just knowing that there are other people out there going through what I am going through helps me get through a day. good luck to you

[lnh31]

They tested everything you listed, I think. I know for sure the t3 and t4 and they say they are normal. I am going to pick up my test results to see for myself though. I have no insurance adn no one will insure me so these tests are getting very expensive. I would like to make a list  of tests that I should have done so I am not waisting my money on tests that I have already have or dont need.

They did a thyroid ultrasound on friday and the tech said she thinks everything looks fine. I should get the results tomorrow. Right now my main concern is the neck pain and swelling and the incontinence. I have had two accidents this week.

I am concerned about cancer now that I have done all this research online

[patsy10]

Those are classic symptoms of lyme disease.  I also had the rash and have a host of symptoms and problems.  Lyme testing is not very accurate

[lnh31]

I picked up my lab results today please let me know if you know anything about them becasue I am not getting any anwsers.

My ANA was Negative lat month when they tested it.

MONOCYTE 11 STATED TO BE HIGH

here are my epstein barr test results. I dont know what they mean yet but . .

EBV NUC Ab > 8.0
EBV EAD Ab 8.0
EBV VCA Igm 0.9

Other Tests:

CBC Value Reference

white count: 6.8 4.0-10.0 K/uL
red blood count 5.22 H 4.20-5.20 M/uL
Hemoglobin 16.2 H 12.0-16.0 g/dL


Sodium 142
Potassium 3.8
chloride 105
carbon dioxide level 30
calcium 9.4
glucose 88
blood urea nitrogen 11
Creatinine 0.76
bun/creatinine ratio 14.5
glomerular filtration rate 93
glomerular filtration rate AA 112



TSH 1.946
FREE T4 .09
FREE T3 3.5
B12 589

THYROID ULTRASOUND

SMALL NODULE FOUND ON BOTH SIDES OF THYROID ONE IS 4.6X6X7.7 MM AND THE OTHER IS 4.9X7

RADIOLOGIST SUGGESTS THAT I HAVE ANOTHER ULTRASOUND IN 6 MONTHS TO SEE IF THERE IS ANY CHANGES. OTHER THAN THAT NOTHING.

ANY THOUGHTS?