Lupus Forum - It's Good to Know I'm Not Alone.

Conditions and Diseases > Lupus Forum > It's Good to Know I'm Not Alone.

Q: It's Good to Know I'm Not Alone.

asked by: jocoreed on January 3rd, 2006

New User

I am a 27 year old mother of two who has had varying medical problems for the last 8-10 years. It started with joint problems in my late teens, followed by weight gain, followed by benign thyroid nodules. After years of being told that I had hypothyroidism (even though my thyroid levels were always perfect), i'm now being told that I "could have" lupus, specifically sle. I have an elevated esr blood test, elevated d-dimer test, hair loss, severe fatigue, muscle soreness all over body but the most intense is in legs, poor circulation in my feet, and my face always appears to have a slight sunburn across my cheeks. I haven't been confirmed because I had a negative ana test. As crazy as it sounds, I was actually relieved when a doctor finally mentioned lupus, only now he hasn't "confirmed" me. I was told that "i probably have lupus but we'll have to wait for additional symptoms". That was a huge set back for me because I have been living with these problems for years with no answers. I go through boughts of depression and lethargy, and there are days when I literally feel like I don't have the energy to push the blankets down to get out of bed. Anyone with any words of encouragement, advice, or experience is welcome here. Just seeing that other people have the same issues is a big help.

Replies(2)

Rebecca Schwartz

replied on January 4th, 2006

New User

Not Alone

I have hypothyroidism, lupus, and various other hormonal and digestive disorders with which I have suffered most, if not all my life. With most of these issues, a diagnosis was relatively easy to get. My mother, on the other hand, was not so lucky. She has all the symptoms of lupus, but has always gotten negative test results. The result: the doctors think she's crazy! :( she does, in fact have rheumatoid arthritis, which has been known to cause symptoms of other autoimmune diseases. She has the butterfly rash across her face, and everything! You had mentioned joint pain for years and other problems that would lead me to ask if you have been checked for rheumatoid? In my mother's case, that was the underlying problem.

jocoreed

replied on January 4th, 2006

New User

Not Alone

Thanks rebecca!
I have not been screened for ra, but it may be beneficial to do so. I've had the same experience as your mother, it sounds like. Not only do you wonder if everyone else thinks your crazy, you also start to question yourself. I don't know much about ra, but after reading up on it, it's interesting how the symptoms can cross over to many autoimmune diseases. But ra actually would make more sense. I know I have atleast one grandparent who had it, and i've had severe problems with the cartilege in my knees, and on my last orthopedic check up, my left knee was completely unaligned. My femur sits almost a half inch farther outward than my tibia, which at the time, my doctor told me it was probably just because my ligaments were so out of shape they weren't doing their job to hold the bones in place (which I questioned even then). Needless to say, after doing the painful at-home rehab to strengthen the muscles and ligaments I still have the same problems. Thank you for your insight. I will definately look into that.

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