sick of being sick!!

hello everyone, not sure if this is the correct place to post this,but i'm in need of help. i have been sick for about 5 years now, and i am unable to get a diagnosis. i have been to the doctor numerous times and have had alot of blood work done to find out what could be the problem. these are my symptoms:

chronic headaches
dizziness
vertigo
blurred vision
severe fatigue
unexplained weight loss 75lbs and counting
itchy red blister type hives when outside in the sun
very red skin on cheeks and bridge of nose, not raised
severe painful joints
painful muscles
sores inside mouth (was tested for thrush, was negative)
anxiety
depression
chest pain, especially with deep breath
fever (99-102 degrees)
hair loss-not in patches
swollen lymph nodes
weak
nausea
moody
chronic severe sinuses

i have been to the doctor over these problems for a while now. my doctor has done the ana test on me and it came out negative. i have lost alot of weight, which is a great thing considering i was really over weight. i have lost 75lbs thus far without trying. im constantly tired but can't sleep. i have episodes of feeling like i can't get enough air. my hair is falling out, not in patches, but just evenly all over. i get tunnel vision sometimes, especially at walmart, not sure why. i took my children swimming and now im covered in itchy red blister type hives, happens to me when out in the sun. the rash is on my back, neck, arms, shoulders, wherever the sun has hit me.  i have chronic headaches and suffer from nausea. when i was at my doctors, i showed her the red skin across the bridge of my nose and cheeks, but she said that it was not a butterfly rash, because it wasn't raised. she diagnosed me with chronic fatigue syndrom (syndrome), but i think there is more to it than that. i do suffer from severe sinus problems, which none of the doctors can tell my why. my lab test also showed that i have a problem with my thyroid, so i'm in the middle of getting that looked at. i just feel terrible, and i'm not sure what to do. my children are the reason i get out of bed everyday. is it possilbe for the ana test to come out negative and to have lupus?? does anyone have any idea what this could be??  not sure what to do, i can't live like this!!! i just constantly walk around and feel terrible, like i'm not me. i never used to have allergies to the sun, and i was always careful since i have fair skin. lupus is the only thing i have come across that lists alot of my symptoms. please help me!!

thanks
jenn

also, i have had something weird happening to me at night. i lay down to go to sleep, and i will lay down on my side, all of a sudden, within minutes, i will get paralyzed, but i can hear everything going on around me. i thought this was sleep paralysis, but its not. sleep paralysis happens to people that lay on their backs, not sides. thats how it first happened. the last episode of this, i layed down on my side, closed my eyes, started to feel strange within seconds, tried to get up, but was paralyzed. the only thing i moved was my eyes, i was able to open them, then i started to shake uncontrollably. i was shaking so hard that my husband, who was laying right next to me, his body was shaking because of me. my dog jumped on the bed to see what i was doing. i was stuck like this for 1-3 minutes, even though it seemed like forever. my husband didn't wake up from this, he is a very heavy sleeper. once i snapped out of this, i was so shaken and scared that i cried. i told my doctor about this, and she said she never heard of this. did i have a seizure or something?? what is going on?? i don't do drugs of any sort, and i've checked with my pharmacist to see if it could be any meds i'm on, and he said no. please help me!!

[luppylupus]

Hello Jenn. I so much want to say welcome to the wonderful life of Lupus. to your question about having negative ANA test.. well ya that does happen alot. I know wooth me I had several test done that said nope I didn't have it then there it was. I'm not a doctor yet have dealt with Lupus it seems all my life cause 3 other people in my life also had it, from my grandmother , mom and oldest sister.

I can try to answer some of your questions if you don't mind..ok lets deal with the hair thing, boy I can relate to that one.In 2003 my hair started to get really thin then one morning I woke up and most of it was gone I just had a few patches left so I grabbed the razor and told my husband to take the rest off. i have a weird sense of humor and laughed about it (what else could i do) I got me a couple of wigs and one day i could be a red head and the next a blond. The really funny thing is when it did grow back it was a totally different color that I almost didn't get my drivers license. About walmart, alot of us with Lupus get that tunnel vision problem there, it is the lights they can be a real problem, it isn't uncommon to see me there with my sun-glasses on. it seems to help. The sun itself seems to be giving you some problems I see. I can't expresss enough to every one who has Lupus to use suntan lotion every day before you get dressed even on the days when it is cloudy and raining and if you are planning on spending time outside it needs to be reapplied every two hours (don't forget about your hands and feet) and get the highest spf you can find . I use an 80. Also suntan lotion has an experation date so make sure the date isn't over due.
Lupus head aches are not uncommon and as far as I know not much can be done about them, (sorry). I do know that when i am under stress my Lupus seems to get worse yet my first perscription I was given when DX was anti-depressents.
About butterfly rashes , they don't always have to be raised.
You are so lucky to have children to wake up to. We tried to have at least one when I was much younger (49 now) and we lost 7 all together. So hun praise God that every morning you can see them and hear them laugh , cry and even scream.
I think what made me feel so terrible was just not knowing. So treat yourself as you do Have Lupus I personally think you do.
I also have what is called Lupus seizures, they can be like you said, I have done that alot yet since my husband knows if I even move alittle he wakes up right away some times to hold onto me cause I am shaking so bad I have fallen off the bed onto the floor. Seizures don't have to involve shaking. You know when some one tells you that your just stareing off in space and you don't even know you were, that can be another form of a seizure, you can also jerk out of control, like your arm or leg just jerks out , those ones are the ones that hurt me cause my muscles tighten up.
You didn't say if your in pain or not. I have alot of pain yet others don't. It is 4:43 a.m. right now and I haven't been able to sleep yet cause of the pain and I have taken every pain med I hav. Yet I'll  get threw it hopefully I'll sleep all day and excape this heat wave.
I have a question for you. Has your doctor checked to see how thick your blood is?
I hope I have helped you a little. Take care and God Bless.
Cassie

[irishghost]

hi there, and thanks so much for talking with me about this. i am so frustrated!! yes i am in alot of pain all the time. i have such a hard time sleeping if i sleep at all. not sure if the doc checked my blood thickness, but i will ask. i go back to the doc this upcomming thursday, hopefully she does something for me. i can't take this. i keep going to diff type of docs and still no one can tell me what is happening to me. they are so quick to say i don't have lupus because the ana test was negative, but on the flip side, they can't tell me whats wrong. from what i researched, the ana test isn't exactly dependable. my doc made is sound like, since my ana test came back negative, there is no way i can have lupus. i have alot of the symptoms, but still, the doc seems unconvinced. i can't be sick!!! i have two wonderful children and wonderful husband and a sick mother and father to care for. i'm not crazy, i know something is wrong. i just want the docs to find out whats going on and to treat me so i'm more comfortable. i can't take this much longer. it seems like since i have had my kids, my health went down hill. i'm having memory issues as well. i can not remember certain things about my kids when they were born. thats not something a mother forgets. i mean, they are my greatest accomplishment and the greatest gift god could give me. i am sorry to hear you were unable to have children. my prayers are with you!!  i have researched the internet for so long, trying to find out what is wrong with me. the only thing that is right on the button is lupus. i have so many symptoms, and its so painful. i am so depressed over this, and its frustrating. i was a very active person, and now, i struggle with everything. it just seems like the docs are not concerned with me. like i don't matter to them. i don't know what to do next. i'm thinking of trying another doc or something. i have a question. i have a very bad back with no known cause. i have 4 disc herniated, spinal stenosis, and nerve pain in my legs, feet and hands. i did not have an accident or anything. do you think that lupus could cause this too??? just a thought. there has to be a reason for my back problems. thats how i gained so much weight in the past. i was not active like i used to be, because of my symptoms and the pain i go through everday. i have now lost 75lbs and counting. i am not dieting at all, i'm just losing weight fast. i have to buy new shorts every 2-3 weeks because they get too big. its a good thing since i was over weight, but at the same time, it concerns me. i live in youngstown ohio, and there are not alot of docs to choose from. do you think i should go to a doc that deals with lupus to see if thats what i have?? or do people that know they have lupus only go there?? i was gonna try cleveland clinic, but its too hard for me to travel. its so nice to talk to you cassie, i hope everything works out for you. thanks for listening to me complain. i'm just so frustrated, i'm only 30yrs old and this sick. it makes it hard to be the mother i want to be. thanks again. good luck and god bless you!!

jenn

[luppylupus]

Hi Jenn.Yeah I do think you should go to the City and see a Doctor there , that's what I do. Where I live there isn't even a gas station, just us and the trees so I travel 62 miles one way to see a Doctor that knows something.

I was also thinking if you thought about having fibro, it has alot of systoms that look like Lupus. I'm a weird Lupus person, I'm disabled. Most people who have Lupus have families, a job and can walk. Yet i have had alot of other problems not just Lupus. I have a thing called Anticardiolipid Antibodies that causes alot of greif and of corse I have fibro too.Ask your Doctor Thursday about Fibro.

Pain can intrupt your life yet I don't let it stop me from doing what I want to do, I just do them different then someone else. I also have back problems in the last two years I have lost almost two inches because of compresstion fractures in my spin. I don't mind , I was way too tall anyway.

Take it easy hun and keep on going on.
Cassie

[fox24]

Hi, I also have many of those symptoms that you have as well. . . I have been sick for about 6 months now and finally my PCP is sending me to Rheumatologist On Aug 18th,2010. Im thinking that he's suppecting Lupus or MS (my mother was diagnosed with MS when she was 32, I am now 33!) I am so scared. And it's so wierd but i had those same tremors at bedtime 3 x's so far and they are scarry, my BF cuddles me up with a sheet and holds me till it stops -dr has no answers for me either. I'll check back to this post after my appt on Wed.
Take care