lupus misdiagnosed as fibromyalgia, pain and fatigue

lupus misdiagnosed as fibromyalgia, pain and fatigue

Posted In: 3 Replies
  • Posted By: Anonymous
  • October 15, 2009
  • 11:50 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 sympathise with you completely. I have also been undiagnosed for ten yrs i thought but researching lupus i found this may have started earlier. At 10 yrs old i was admitted to hospital for growing pains. I was under a rheumatologist for a yr with i think three appointments for my joint and knee pain and the sensation of painful growing pains like cold in my bones. I had strange things happen in my teenage yrs such as toe nails just falling off for no reason and pleurasy and migrains etc. My first pregnancy had me admitted to hospital for two urine infections and a few where i wasnt admitted. After giving birth within 6 wks i had two seizures and serious post natal depression and agrophobia. Then at 29 my ankles started to swell hugely like treble their size. I had sudden weight gain a stone and a half in a month for no reason serious eye pain loss of periods stomach problems hair loss chronic fatigue Gall stones removed although pain and symptoms have never gone.Now i have incredibly itchy skin and a pin head red rash on my arms i have blood in my urine and protein and urine infections that seem to go away on their own and no urine infection when i have blood in it.I have dry eyes and blocked eye glands and growing pains and shortness of breath and chest pain and pleurasy pain etc etc I was also told i was mad and all this time the last ten years have been giving anti depressants and told depression causes these problems. I am not ill because im depressed i get depresed cos i am ill and living my life on the sofa too!I am very weak now and suffer hypersensitivity and i know when i go outside i will become ill and am. I stay in.Ten yrs and im now going for dr 9 i have to keep going as i know im ill and i have to get treatment. I presume your from america as im from britain and we have free health care and dont need insurance and i can keep going for as long as it takes. Are they making changes to your health care.I have read several times and from a top lupus specialist dr hughes that there is a percentage of people that wont ever test positive i think its 9 percent. Which is roughly around one in ten lupus patients. The experience i have is that if i dont test positive apart from one ana and one neg ana then i dont have it so im not being refered on to a specialist. I understand it may be something else but i have over forty symptoms and they all when researched link to lupus or auto immune but none of my symptoms have a diagnosis as my last dr wanted to treat me HOLISTICALLy??
    Anonymous 42,789 Replies Flag this Response
  • Be tested for Lyme disease, only through IGENEXI 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!
    Anonymous 42,789 Replies
    • November 5, 2010
    • 02:57 AM
    • 0
    Flag this Response
  • Be tested for Lyme disease, only through IGENEXSo MANY of your symptoms are pointing to hyperparathyroidism; one of the most frequently missed or underdiagnosed conditions that exist. Unfortunately, because of inappropriate guidelines established by the NIH, physicians do not understand what our "appropriate" PTH (parathyroid hormone levels), AND, most importantly, what "normal" calcium levels should be.They should NEVER be in the 10 or 11 range. (..and almost ALL Endos and PCP's do not know this!) Please do me a favor and search on the internet by "elevated calcium" where you will find some eye opening information as it pertains to MANY of the symptoms you have described. A very famous Tampa, FL doctor has created an extensive web page and I can ALMOST guarantee you will find "yourself" written about in his pages! Please understand the "para"thyroids have nothing to do with the "thyroid". I, too, was misdiagnosed with fibro and wrongly told I might be suffering from depression (and so many of the other things you named). Unfortunately, HPT causes just about every symptom you've named. Fortunately, though, there are minimally invasive radioguided probe procedures (surgical removal of the offending adenoma(s), when properly performed, can truly restore your life and your health. I pray this is helpful for you. Finding out about my high calcium level quite a few months ago and having the offending parathyroid adenoma removed has changed my life. I hope it will do the same for you! Many of us share our stories on the parathyroid disease discussion board. I am so passionate about spreading awareness I am writing a book on the subject. My warmest regards and sincere prayer in your search, Angelia
    firebird56 14 Replies
    • November 10, 2010
    • 06:03 PM
    • 0
    Flag this Response
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