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Chronic Fatigue Message Board


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Lupus or CFS
Jun 20, 2009
Hi everyone, Im trying to figure out if I CFS or Lupus. when i was 12 (im 21 now) is when i first got sick. I had extreme fatigue (sleeping 18-20 hrs a day), brain fog, headache, muscle weekness, joint pain and random headaches. I felt like i had the flu but not exactly. anyways the doctors came up with i was positive for EBV and my ana was positive so they suspected lupus. they put me on steroids, they helped me feel a little better but it took about a year to snap out of it and i gradually got better (well some what)

i was never able to go to school, waking up early and that 8 hours was just to much for me and it would make me even worse. so i was home schooled. I have never been fully diagnosed with lupus but they just assumed and thats what i have been going off for the last 9 years.

I have ran a low grade fever ever since off and on and it seems like i am a big roller coaster ride with my health. if it is lupus they said i have been in remission ever since because when i do get "sick" (which is about every other week, and last for any where from a day to a few weeks) but my Ana is always negative so they say its not my lupus causing me to be feeling this way.

last summer, i had a really good summer i was able to go golfing once a week and i would go boating every saturday and have a somewhat decent life even though after i would do these activities i would be done for the day. and it would take a few days to recover from them but i felt somewhat normal it was probably the best i had ever felt. but then came late August and i started to go down hill. i thought it was just from me doing to much and it was making my lupus flare up so i calmed my activities down and went to the doctors and still said its not your lupus... i eventually got even worse come to find out i had a bacterial infection ( H. Pylori) was treated for it in october got better but im still "recovering" from it.

i noticed last august i starting having really bad anxiety (for no reason) i got on an anxiety pill it never helped. i thought i had a thyroid problem because i started getting really sensitive to heat, my palms and feet are always sweaty, i go to the bathroom alot! i cant gain weight no matter how hard i try, i have low blood sugar, i get really bad random headaches. they last any where from a few minutes to a few hours. i get dizzy, flushed, feel like im going to vomit when i get really hot, my peroids have became extremely irregular. i went to the endo he tested my thyroid its borderline hyperthyroid. but he said its not enough to be giving me these symptoms he wanted to test for me a pheochromocytoma ( tumor on the adrenal glands) came back negative so then he thought maybe a tumor on my pituitary gland that came back negative. he did a ACTH stimulation test (they injected me with cortisole and tested my blood) it came back normal but the cortisole made me feel so much better! after him saying i just dont see anything wrong, come back in two months and ill check your thyroid again.

after i got the phone call saying my worst fear (we just cant find anything wrong) i had a break down, i started crying then i noticed i started feeling really hot and sweaty, my palms and feet started to get clamy, and i started to shake, my whole body would shake as if i was extremly cold although i was extremely hot. I was at my parents house when this happend and my dad got on the computer and looked up stress attack which brought him to anxiety attack. but then he found an article about CFS as soon as i read it i started crying because it fit all of my symptoms to a T!

*it explained why i just always have felt like i "cant" excercise and if i try to why it would make me sick.
* it explained my fever and low body temp.
* my random and wierd headaches.
*my sleep problems sometimes i can sleep and sometimes i cant
*why i cant work with out getting sick
*my anxiety
*my muscle pain and why if i do to much they get tight
*my sever fatigue which gets worse with doing to much and to little
*my diarrhia
i can go on and on lol
im going to my doctors thursday and talking to him about it to diagnose me but i know im my very soul this is what i have.
Re: Lupus or CFS
Jun 26, 2009
[QUOTE=Angalicious316;4017389]Hi everyone, Im trying to figure out if I CFS or Lupus. when i was 12 (im 21 now) is when i first got sick. I had extreme fatigue (sleeping 18-20 hrs a day), brain fog, headache, muscle weekness, joint pain and random headaches. I felt like i had the flu but not exactly. anyways the doctors came up with i was positive for EBV and my ana was positive so they suspected lupus. they put me on steroids, they helped me feel a little better but it took about a year to snap out of it and i gradually got better (well some what)

i was never able to go to school, waking up early and that 8 hours was just to much for me and it would make me even worse. so i was home schooled. I have never been fully diagnosed with lupus but they just assumed and thats what i have been going off for the last 9 years.

I have ran a low grade fever ever since off and on and it seems like i am a big roller coaster ride with my health. if it is lupus they said i have been in remission ever since because when i do get "sick" (which is about every other week, and last for any where from a day to a few weeks) but my Ana is always negative so they say its not my lupus causing me to be feeling this way.

last summer, i had a really good summer i was able to go golfing once a week and i would go boating every saturday and have a somewhat decent life even though after i would do these activities i would be done for the day. and it would take a few days to recover from them but i felt somewhat normal it was probably the best i had ever felt. but then came late August and i started to go down hill. i thought it was just from me doing to much and it was making my lupus flare up so i calmed my activities down and went to the doctors and still said its not your lupus... i eventually got even worse come to find out i had a bacterial infection ( H. Pylori) was treated for it in october got better but im still "recovering" from it.

i noticed last august i starting having really bad anxiety (for no reason) i got on an anxiety pill it never helped. i thought i had a thyroid problem because i started getting really sensitive to heat, my palms and feet are always sweaty, i go to the bathroom alot! i cant gain weight no matter how hard i try, i have low blood sugar, i get really bad random headaches. they last any where from a few minutes to a few hours. i get dizzy, flushed, feel like im going to vomit when i get really hot, my peroids have became extremely irregular. i went to the endo he tested my thyroid its borderline hyperthyroid. but he said its not enough to be giving me these symptoms he wanted to test for me a pheochromocytoma ( tumor on the adrenal glands) came back negative so then he thought maybe a tumor on my pituitary gland that came back negative. he did a ACTH stimulation test (they injected me with cortisole and tested my blood) it came back normal but the cortisole made me feel so much better! after him saying i just dont see anything wrong, come back in two months and ill check your thyroid again.

after i got the phone call saying my worst fear (we just cant find anything wrong) i had a break down, i started crying then i noticed i started feeling really hot and sweaty, my palms and feet started to get clamy, and i started to shake, my whole body would shake as if i was extremly cold although i was extremely hot. I was at my parents house when this happend and my dad got on the computer and looked up stress attack which brought him to anxiety attack. but then he found an article about CFS as soon as i read it i started crying because it fit all of my symptoms to a T!

*it explained why i just always have felt like i "cant" excercise and if i try to why it would make me sick.
* it explained my fever and low body temp.
* my random and wierd headaches.
*my sleep problems sometimes i can sleep and sometimes i cant
*why i cant work with out getting sick
*my anxiety
*my muscle pain and why if i do to much they get tight
*my sever fatigue which gets worse with doing to much and to little
*my diarrhia
i can go on and on lol
im going to my doctors thursday and talking to him about it to diagnose me but i know im my very soul this is what i have.[/QUOTE]





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