http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutdiagnosis.aspx?articleid=94&zoneid=15

This article should be helpful :) Hope you feel better soon :)
~Kristy

It's always possible, What kind of kidney disease do you have? Since you mentioned the RA group, do you have RA? Have the docs done a kidney biopsy? It would show up as lupus based on what lights up when they do the immunofluoresence. The other thing is that most nephrologists do the tests to rule out lupus since it's a common cause of kidney problems. It may be that your nephrologist has already run the necessary tests to rule lupus out. Again, ask him!

I;m not suer what your doctor was getting at. Next time, it makes sense to ask outright. Heart palpitations and flushing are not particularly specific to lupus. And there are other diseases that have light sensitivities. In fact, there are 351 diseases that cause photophobia. (FOr those who want to look it up, the link is http://www.wrongdiagnosis.com/symptom/light-sensitivity.htm.) I don;t mean to ask a silly question, but have you been to see the eye doctor? A great number of the causes of photophobia are related to the eyes. I realize that your eyes don't just hurt, but it;s worth checking out. The other common cause is medication. If you've got a regular nephrologist, then you're probably on medication. It might be worth looking up all of your meds and reading the fine print in the Prescribing Information to see if photophobia is a SIDE EFFECT.

Hope this helps.

Tracy

Hi,
Have you had your thyroid tested recently? Its very hard to say what symptoms are actually being caused by when they can be from a slew of other auto immune diseases. Hyperthyroidism (graves disease) being one of them. Your thyroid can be just a little bit off and still cause some major symptoms. This is one of the main reasons why it is so hard to diagnose lupus if the more specific lupus blood work does not indicate lupus. I have had all the symptoms you have mentioned at times during a panic attack. Do you think its possible that maybe you are suffering from anxiety/panic attacks? TRUE panic disorder comes out of nowhere, meaning there is nothing that triggers them (like a stressful situation, fear, etc.) they just happen all of a sudder. Not to say that you have mental problems at all so please dont take it that way, but your symptoms do sound like they could be panic attack related. Lupus, thyroid issues, diabetes, mixed connective tissue diseases, etc. can all also cause anxiety/panic attacks. You could have an auto immune disease which is triggering panic attacks.

Im not sure why the ra group would post something so unhelpful to someone seeking advice/support. The only way you learn about any disease is by talking to others who have it. You are always welcome to ask anything here. Alot of us here have lived in limbo not knowing exactly whats wrong with us and regardless, supported eachother. Remeber that people in groups are not dr.s and they dont know everything about a disease. Auto immune diseases affect everyone differently. Some have positive tests all the time, others have only had positive results once in a while but suffer just as badly. Im not sure how RA works blood work wise (whether it can be a false negative and still have it) but I know that lupus blood work can be inaccurate. Gotta run but ask us anything. See a cardiologist for your heart. They may have you wear a halter monitor,Better to be safe then sorry. also make sure your thyroid has been checked.
Hugs

Hi irishrooster,

I know exactly how you feel. I have recently been getting anxiety attacks, every since my doc increased my prednisone dose from 5 to 30mg, now i am at 10...i break out is sweats all of a sudden, heart thumping (palpitations), feeling flushed, headache, etc. I kinda know when I am about to get one, so whereever i am, i just have to stand still or sit still for a few minutes. i also get those more when i am alone, i don't know why. i hope it's coming from prednisone (which is a side effect) rather than lupus itself. i am hypothyroid at times, so i wouldn't be surprised if this is caused by thyroid issues.

I have lupus and I notice that I flush for no reason at all some days. I also will get about 50 ppl a day asking me about my "sunburn" when I don't have one. Don't even get me started on sweating hon! I sweat all the time and am always hot. Flourescent lights aren't the problem with me (besides the generally unflattering affects they have in a dressing room) mine is any heat or sun. I used to tan easily but then it just changed one day. I can still get a pretty good tan, but I will get a red rash after sun exposure. Even from sitting in the car. I think that's a big thing with Lupus.
I'm not saying you have Lupus, just that these are things to consider. You can send me a message if you want to talk more about it.

Hi irishrooster. I want to comment on one thing you said about the florescent lights and covers on them. I believe that if your work would have put covers on, you might have been fine. I work directly under a florescent light all day and it doesn't affect me until late in the day. However, when I go shopping at Walmart where the florescent lights are all open without covers, I am feeling sick about 1/2 hour into the shopping. It happens everytime. I get the sick stomach, dizzy and weak.

Anyway, have a good day.

Thank you Kristy for the article....it was very good to read about the photosensitivty/photophobia. I absolutey HATE the sun and always have ever since I was a young girl. I can only be in it for a very short time before I get a fine rash and feel weak and sick to my stomach. My son has soccer games and I keep telling my husband that we need to get an umbrella so that the sun will not bother me. I think the idea is embarrassing to him.

Maybe this article will be just what I need to convince him that this season we should get an umbrella so that I do not have to come home after the game and sleep for 3-4 hours!! Thanks again!

Hi Tracy, Thanks for your comments! Your ideas are very helpful and I will talk with the dr. about them. I know they are running an ANA test so I think they are checking for RA and lupus. I have been tested for RA and as my numbers keep getting higher every time I go they are thinking that I do have RA but wont treat me until my RA factor is 30, I think it is around 22 right now. That is really high enough since normal people do not walk around with a RA factor of 22 but who knows why dr.s do the things they do. I am tired of trying to figure the guys out. My eyes have always been sensitive and I am being tested for glaucoma every 6 months since my opthalmalogist found pressure a few times. I also take meds that say I should not be out in the sun for more than 15 minutes as I could have a heat stroke. However I hated the sun/heat/flourescent lights way long before I had these meds. So anyway I guess I will just wait and see.

Again thanks for writing. I appreciate it!!

Hi Luv, Thanks for your reply! Yes, I actually have been tested for and found positive for hypo/hyer thyroid condition. Yes, I am one of the freaks that actually have both! I take armour thyroid, 2 grain, the highest amount. So I hope it is being managed. I am also being tested for RA regulary as they are pretty sure I have it but will not treat me until the RA factor hits 30. I have about a 22 and I am pretty sure the regular people do not walk around with a 22 but I take muscle relaxers and Lyrica and they are helping so now I just get to worry about the ugly claw fingers my poor grandma who was a accomplished painter ended up with---Oh joy.

I have seen a cardiologist while in the hospital for hypertension. They did EKG's, blood tests for my heart and a Echo Stress tests. All of my heart tests came out very good and also my cholesterol is 179 and my triglycerides are low--(after about 5 years of being very high though). My dad died of a massive heart attack at 49 due to artheriosclerosis which is what a lot of what I am experiencing could be due to.

Yes, I do have panic attacks and generalized anxiety disorder. I do take Ativan for them and I probably will for the rest of my life my psychiatrist said some people can never get off of them. They make your life absolutey hell. People who have never had a panic attack have no idea. It feels just like you are having a heart attack (well what I figure one is like) and you feel like you are dying. Well, you know what I mean. I am sorry you have them too.

Again thanks for writing. As for the mixed connective tissue disorder, I need to call my doctor about that because I think I was actually dx with that and for some reason they never told me. i remember seeing it on my chart. why would they not tell me????

Hi Bolly, I do not think that panic is caused by hypothyroid. I have a book on hypothyroid and I dont think it is mentioned in there but the fact that you may worry about these issues could cause generalized anxiety and if you have enough of that then panic attacks could start up. Check with your doctor aboutthem. no one should have to suffer with panic attacks. They are one of the most miserable things and totally screw up your life.

Thanks for writing and good luck to you!

Hi Whit!

Thank you for writing and for your empathy! It is weird but I like to come to the forums because it kinda makes me feel better to know other people feel the same. As far as the sun and heat i know exactly what you mean! The side of me that faces the sun in the car always looks horrible when I get somewhere. I have people making comments about me as well. It is very embarrassing. I hate to wear makeup in the summer now because I sweat it off and it looks like that barmaid with the white streaked face in Urban Cowboy!! My friends are always pulling out their powder compacts and "fixing" my face. Its ridiculous!!

I will love to write to you sometimes because this is a big concern for me and I could really use some insight and a friend with the same concerns! Thank you for your sweet offer! Take care!

Hi dadsgirl, That is so weird about when you are shopping at Wal-Mart! That is exactly what happens to me!!!! Here is what you do, my doctor told me to do this and like he said it just "makes sense". Before you go to WalMart, when you put on your makeup put on a light moisturizer with a good spf in it like Neutrogena (this is what I use and it works like a dream!). Anyway, it does work and it makes you feel so free because all of a sudden you can shop for hours without all of that stupid sickness. I remember when I would have to sit down on the shelves and the Walmart employees would look at me and freak out because I would be so white, sweaty, and trembling. They would always want to bring me some water!! Not anymore, I gotta buy my own water now, oh wll I guess I dont mind!! Take care and go get some Neutrogena moisturizer for sensitive skin.

Hi Irish,
HYPER thyroid can cause panic and anxiety attacks. It causes an over production of the thyroid hormone which can completely wack out brain chemicals. Hypo is when your body doesnt produce enough thyroid hormone which is why it doesnt really cause anxiety/panic attacks. I have a friend who has Graves disease (hyperthyroidism) and one of her main symptoms when her thyroid is off is severe anxiety and panic attacks. Its one of the main symptoms she had that lead her dr. to test her for thyroid problems. It can also make you feel really sick. This could be one of the reasons why you arent feeling good. Im sure you see an endocrinologist???Just an FYI.

And yes....panic attacks are one of the worse things a person can suffer from. They are absolutely horrible....Unless you have had them you cannot understand how terrible they are.

Im kind of confused as to why if you have a positive RA test they wouldnt at least start you on some sort of medication for it. RA only does more damadge if its not controlled. Maybe you should get a second opinion.

Hi Luv, Actually its interesting that you mentioned about hyperthyroid because I have BOTH hypo and hyper. It is supposed to be kinda rare. I do know 2 other people that have it though so I dont know how rare it can be. I have had horrible panic attacks since I was about 20 and I am 44 now. I used to have them driving on the highway until I learned that if I listened to heavy metal or hip hop music and drove really fast in the fast lane I would be ok. Pretty weird huh, I guess I am a weird person. Maybe that is why doctors dont do much for me. Although my tests speak for themselves. I went to see a rheumy and he just about pushed me out the door saying that I had seen just about every rheumy in town (he was getting at doctor shopping and I had actually seen only 2 other rheumys over several years and left them for VERY good and sound reasons). Anyway, I have told them that since my RA is higher than normal people and my sed rate is gradually going up shouldnt I be treated? They tell me no that I should just wait until the RA is 30. Maybe they dont care here, although it is Austin and Austin has a good rep with doctors.

I do not see an endocrinologist. I see a fibro doctor and she is treating me for my thyroid condition. She has me on supplements for my thyroid as well. I also have adrenal insufficiency, have you heard of it? I think that is what causes a lot of tiredness. plus my hormones are like an 80 year old woman, although I am not going through menopause yet. once again, pretty weird. I swear I think that stupid Epstein Bar screwed me up. I think my once best friend gave it to me because she was always so tired and never knew why and would sleep hours and hours every day. she did have 4 kids though so I figured that was why. Then since she was my best friend I would do stupid stuff like drink after her and other stuff like that. Well I got sick not long after we became good friends and had the same symptoms as her. Once again pretty weird. This whole world is pretty weird and I think I am going to go and try to be normal by spending some bucks at the Target! Take care girl!1

Welcome to my world. I have panic attacks alot. My med doc told me if my heart starts racing I need to put my feet up and try to take it easy. I think the moody side effects on some meds and just life in general triggers them. Mild anti depressants took care of frequent panic attacks. Been a smoker most of my life. Started back...before you say quit...just listen. I have not had any. They say for a smoker to quit, the stress alone can kill u. Well, I believe them now. I quit for a year and a half, most stressful time of my life. I'm not saying smoke. I am just saying do you get the connection?? Stress is horrible Hugs, Ronda