Discussions By Condition: Autoimmune Disease

Normal Thyroid levels Hoshimotos Epstien barr, firomyalgia

Posted In: Autoimmune Disease 3 Replies
  • Posted By: Anonymous
  • October 15, 2009
  • 11:47 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! I am so sorry about all our your problems, I was diagnosed in 2004 with MS, it is not as bad as all that you have been through, but I have been trying to find help for my niece, I came across your post, she is only 13. she has been showing symptoms of something for over a year now, but the doctors can't figure it out, she has been having some of the symptoms you have stated.her thyroid tests came back in the normal range to, but i am not convinced it is not her thyroid, I wish I could help you and my niece somehow, they (alot of people) keep saying, oh, she's just being a typical lazy teenager, it is really not that.I wish alot of doctors out there would stop saying 'it's all in your head" how do they know?did they do any tests to rule it out?I wish you all the best, and hopefully the new year will bring you some answers,Toni
    atvslim2004 6 Replies
    • January 1, 2010
    • 00:16 AM
    • 0
    Flag this Response
  • 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!Sounds a lot like what I have been dealing with. I had/have candida and have been told I have Sjogrens. Haven't decided what to do with myself yet. Hope this gives you some ideas. Good Luck
    Anonymous 42789 Replies Flag this Response
  • 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!I just want to tell you that I understand your pain and frustration. I have had MANY of the same symptoms as you; as well as Mono that seemed to never go away as a teen. I also have hair loss and a "borderline" ANA test, elevated sed rate and swollen lymph nodes. Never been diagnosed with fibromyalgia or EBV. I see a rhumatologist next week and hope they have some answers. I also have low blood pressure, pain in my joints EVERYday and constantly fatigued! My friend who shares alot of the same symtoms was recently (finally) diagnosed with hashimotos thyroiditis. you seem to have a LOT of the same symptoms as her! does anyone in your family have thyroid issues? My grandmother does as well as polymyalgia rhematica and my mom has MS. ask the MD to check your "free T3 and free T4" which most MD's do not do for thyroid. If it turns out not to be thyroid, it might be MS. MS is HARD to diagnose! my mom was Misdiagnosed for years! One other thing i have found beneficial is viatamins and minerals. Not the run of the mill at the local drugstore, but specfically one that compounded to be 98% absorbed by the body. Check out ciliminerals.com, they have questionarres you can take that are helpful! and you can order the supplements online! Good Luck!! :o
    reyna77 4 Replies Flag this Response
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