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They tell me I have Lupus...what do you think?
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They tell me I have Lupus...what do you think?

I need help. I am confused. The jerkface Rheumatologist immediately thought I had Lupus when I went to see him with my symptoms and a (+) ANA 1:160 Homogenous (sp). He ran several Lupus tests, told me nothing came back abnormal, that I have Fibro, gave me Nuerontin and shoved me out the door. What a joke. I do not have Fibro...or at least not 'just' Fibro. What do you think?

It all started in Jan. with a face rash. I had very visible swelling in my eye/bridge of my nose area, down the sides of my face, a little on my neck. It itched and burned, lasted a couple days...then, gone. Just some dry skin left behind. hands turned red....a faint red always, except my knuckles, they remain white, and started 'flaring up' red, itchy, when I would get upset or overheated, or if I use them too much, like after doing some house work. One night it even felt like my joints in my hand got warm and achy, like I would imagine arthritis may feel like. My hands are also often swollen now too.

Then my thighs started to hurt, like I had been at the gym 24 hrs straight, and all my muscles felt painfully "tight". My legs still hurt, never went away. It hurts to climb stairs now, I walk like I am disabled, people ask why. I do not know why, I am stiff, sore. On days when I am running errands and I sit down it seems to hurt more, my elbows and knees hurt in addition to my legs. All of this gets worse with more activity. Other than my hands there are no other rashes.
My feet get cold all the time, the kind of cold that nothing can help, not even 3 pairs of socks, hot water only.
One of the worst symptoms is every single morning I have to DRAG myself out of bed, "unrefreshing sleep" doesn't do the way this feels any's like a train hit me. I spell things backwards when I'm typing. I have tremors in my hands and muscle twitches/eye twitches, cognitive abilities are shot, embarrassing mistakes, no memory, mood swings. Anxiety and no tolerance for temperature changes, hot nor cold. The sun nor lights bother me.

I was starting to look at MS as a possibility after the Rheumy ruled out Lupus. But several people insist I have Lupus. I have an appt w/ the Neuro on the 22nd. The suspense is killing me and I know that no one here can tell for sure, but in the meantime, I want to try and see how my symptoms add up to those of you that actually have been diagnosed with Lupus.

Any input, anything you can share with me is soooo much greatly appreciated :)

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Avatar f tn
Hi Nicole, I am in the same boat as you so I understand how frustrated and scared you are. I started having my first symptoms at 11 but of course it was pushed to a different diagnosis even though I have two immediate family members who have been diagnosed with Lupus. They never even considered the possibility.

For me it started in my knees. They would ache so bad to the point I wouldn't even sleep at night, and then have to go to school in the morning. First they told me I had growing pains. I was persistent and continued to complain that the aches were more than just growing pains. Then my family dr sent me to a sports medicine specialist who told me I have patella femoral syndrome which is when your muscles grow faster than your bones, since by this point my knees were popping out of place as well as aching so badly I could barely walk. I learned to live with these continuing problems and gave up on dr's all together. Finally at 18 an ortho surgeon operated and fixed the years of damage in my one knee (from continunally popping out of place) with two separate surgeries and besides the constant aching the popping has now stopped. The other knee we were able to fix for the time being with years of intense physio. When I had surgery I broke out in what I now suspect to be the typical lupus type rash all over most of my face, upper body and arms. It was red, raised and itchy and appeared about 3 days after surgery.

I should mention that during my high school years I did also start to have some aching in my hands as well but it was only sometimes so I didn't think much of it as well as high school was when my migraines started.

My second symptom flare up that was missed was when I was 18. I had just moved from home to start college and developed what I thought was tonsolitits. I saw a dr and took antiobiotics for the required 7 days. I ended up continuing to be sick with a fever, runny nose, flu-like symptoms for approx 6 months this time. Finally one day I was having such a hard time breathing one of my room mates took my to the ER. Along with the difficulty breathing I also had this red, inflamed looking rash all over both my hands and forearms. My hands were so swollen I couldnt even interlock my fingers. After 6 months they diagnosed me with asthma because of my decreased air entry to my lungs and difficulty breathing. Since being diagnosed I have noticed the only time I have trouble breathing is when it is -30 degrees celcius outside or when I am around contained cigarette smoke. I find most people who are not around either of these circumstances on a regular basis have trouble breathing in both situations as well though so I'm not convinced this is asthma anymore. I only take an inhaler on an as needed basis and can't even say the last time I have taken it. At this time my ANA was tested and it came back negative. I gave in to some advice and saw a natropath as I was at the end of my rope and was told I had Lupus so its always been in the back of my mind.

Over the next couple of years my aching body became more pronounced and worse. I found daily tasks harder to do and noticed that my migraines became worse and I started to get them more often.

This most recent flare strikes me as the most frustrating. About 2, almost 2 and a half months ago I started feeling flu-like. I am a nurse in an acute care hospital so I assumed I had caught the flu that was going around from one of our patients. I didn't think much of it and tried to recuperate over my 2 days off. I felt nauseated and started aching all over my whole body as well as getting a headache. I noticed that my hair was falling out significantly more than usual. One evening my husband and I were going out with friends so I went to get dressed in some jeans I hadn't worn in awhile and I could pull them on and off without undoing them. I had noticed some weight loss but it's hard to judge in scrubs all the time. The next shift I was on I weighed myself and noted I had lost 17 pounds in the 3 weeks since this had all started. Since then my aching has gotten significantly worse to the point where I have days I can barely get out of bed, or even roll over. I can barely hold a brush to brush my own hair or my teeth or hold my dogs leashes to take them outside. And that doesnt even cover the extreme fatigue, plus I work full time night shift and can't sleep most of the time because I am in too much pain. I also have the butterfly rash and this itchy skin that drives me crazy. As well, just in the last few days I am starting to get feverish on and off. The last two months has been unbearable. I saw my dr and told him my symptoms. He sent the blood work in and my ANA came back positive, as well I found out I have very low iron which is most likely due to lupus since I have never had an issue before. I had to have some more blood work done and am waiting the 6-8 weeks for the results. After that as long as its positive (and based on my symptoms and the positive ANA there is about a 97% chance) I will be seeing a rheumatologist. As much as I don't want to live with this disease I would rather know what is wrong and deal with it. Dealing with this is hard enough nevermind that, I don't know about you, but I have become fairly isolated because I have no energy for anything. I work, I sleep, I eat, and I spend time at home with my husband because I have no energy left for anything else. If I do get a spurt of energy I try to reconnect with my friends because I am usually a very sociable person but this has really taken a toll on me.

To me, it sounds like you have a lot of simlar symptoms as I do. Sometimes it takes awhile to get a positive blood test and I know its frustrating. As well, dr's have to rule out all the other diseases that have the same symptoms as lupus to be sure that your symptoms cannot be caused by anything else. I know none of this is a comfort when you are in pain and are frustrated. I hope that it is some comfort in knowing you are not alone in the battle and yes to me it sounds like you have all the symptoms of lupus and just need the blood work to back you up. The mayo clinic website has some great information about lupus and the position symptoms your body shows before diagnosis can be made as well as information about other autoimmune diseases. is another website with great information that I use here in canada. Hang in there, and if you'd like to chat some more feel free to contact me!

Take care, hope this helps  :)
434278 tn?1324709825
Hi Nicole,

Sorry to hear that you have not been feeling well.  The best advice I can give you is to spend time in the sun just prior to having your ANA checked.  About 20-30 min. depending on how strong the sun is.  (even if it's cloudy).  If you have lupus, it will cause an immune response, thus causing your ANA to be elevated.  Mine went from 1:640 to 1:2,560 just from spending time in the sun.  I also had 5 of the 11 criteria for a lupus dx.  Educate yourself.

God bless sweetie.
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