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.
Head Aches and migraines
Frequent UTIs and other infections
Low blood pressure
Sleeping 12-17 hours per day
Vision issues (delayed focus, twitching sensation)
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)
Slow speech (sometimes even slurred)
Black out upon standing
Sensitivity to cold
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!