Hi there!

I am dealing with a similar "nostril" issue tight this very moment. I have had a sore in my nose off and on for almost 2 months. I get excited that it finally heals... and then it comes back.. Ugh!

I have not been "officially" dx'd with lupus. I am meeting with my new doc to go over my blood work, which I already know includes a Vit D deficiency and an elevated Sed Rate.

I have had a flare going on for almost 2 months now.. Extreme fatigue, severe headaches, joint pain and overall feeling icky. It started with some stress and being out in the sun all day. I decided enough was enough and now I am going to a new doctor.

I have been having symptoms for almost 4 years. I get frequent kidney infections and know that I will cause a flare by lack of sleep or being in the sun or heat. I am severely prone to headaches, in the past two weeks I have had a constant one.

I know it can be frustrating, as my last doctor just blew me off, acting as if I was crazy and making up these symptoms. I know that I am not crazy. I want to get to the bottom of whatever is going on, and start treating what I can so I can be "normal" again.

I am a newbie on this site and I hope it will continue to be a helpful resource!!

Hi mwagner, You will love this site. The people here are so terrific and really care for you. They always try to help even if it is only to say, "wow, I have never had that but I sure hope you feel better soon". Thats pretty special. Of course it did take a while to get an answer for this nose thing. But a lot of time they simply dont know what to say and are already responding to another one of your posts. Anyway, I would also be getting rid of your doctor. Sometimes help comes from really weird places. This may sound strange but you might consider going to the ER if you have insurance pretty much right now if your headache is super bad. I did that with my high bp because it was pretty high one night and I called the pharmacist and she told me to go to the ER. Well, I did and they ran heart tests on me and they came out fine, Yeah!!! so they said "go to a nephrologist--kidney doctor." You mentioned frequent kidney infections well they may tell you the same thing if you tell them all your symptoms. I will tell you this, I went to the neph. doc and he has blown me away with his extreme caring and thoroughness. He has ordered like 4 pages of blood work for me (including lupus tests) and he has me going to get an ultrasound of my kidneys and a doppler of my legs. He thinks I have several things. I mean he could just be seeing me for the kidney thing but he is seeing me for ALL of it. He does not have to do that. As a matter of fact I saw a rheumy last year who told me I should see another doctor for some other symptom I had because it was "professional courtesy" to not step on each others toes that way---so in doctorese "I dont wanna take away some money you could be giving to some other doctor". I thought he was being nice at first!! I am so naive sometimes!

So heres the deal, go to the ER if you can. If you dont have insurance find the county ER and go there. They have to accept you and you can pay them 10/month for the rest of your life if you have to and they will accept it. Then know this, you do have symptoms of lupus with the Vit. D deficiency and the sun related stuff and the kidneys and the headaches. Of course they could be something else too. However, the point is you should NOT be having these issues to start with! People seem to think we want to be sick, like it is enjoyable laying around all the time or not being able to hang out at the pool or the beach or whatever because we feel yucky. prove them all wrong and dont stop till you get your dx. Thats what I am doing. Unfortunately it is costing me because now I am geting stuck with some pretty bad stuff and all those people who thought I was faking for years are all being nice and I think I actually hate them a little bit now. Thats mean I know but at this point I dont really care. Good luck. Hey at least we wont be having heart attacks from snorting coke with our funky noses right? Theres one bright spot for us!!!

I to have nose sores....lol. And the smell....yuck sometimes. So I guess this is like welcome to Lupus. Lupus is so hard to detect, you can have it and your ANA will come back negitive. Mine hasn't yet...but I know people that have it also and that has happened to them. I also have mouth sores some times. Had them most of my life. I guess I got lucky, my doc has all the labs and xray equipment there. He is good!!! I have been very lucky.

Thank you for all encouragement. Today was a good day. I finally have no headache. I am ready for my doctor appt with my new doc and will
try to bring as much to her as I can, so we can get a definitive answer together. Thank you! :)

Hey there Ronda and mwagner, Ronda, not sure who you are welcoming to lupus, me or mwagner. She sure has had a tough time, thats for sure. Its been tough for me also. Stupid Epstein Bar has totally wrecked my life like a big wrecking ball hitting me upside the head! Also, your a bar owner so I know you will understand this way of puttting it----I always play songs on the jukebox that are simply songs on the CD's that are in there. My husband gets mad at me because he says they are not "bar songs" but rather deep, profound, philosophical and even sad songs. I always am of the opinion that as long as I like what I am paying for and can enjoy drinking my own beer to it what does it matter? Anyway, this message will probably get thrown out because it mentions "beer". I made a joke with another guy about how since our noses are so messed up at least we wouldnt be dying from a heart attack due to ahhh...lets see...how should I put it so delicately...enjoying a "snow" day? So I guess you have to be really careful here. I dont blame them they dont want it to get out of control.

mwagner, I am glad you are seeing your doc. I just want you to remember to be proactive. Your the one paying these people. You are putting food on their tables and paying their gold green fees. So you have every single right to ask questions and call them about things. Take all your questions in there and do not let them get away with trying to not answer every single one. Take time to write down the answers also. DO NOT LET THEM INTIMIDATE you. That happens so often, especially with women. Even with women doctors. Sometimes it is worse with them. I see a nurse practioner, she is female, and so far in all my 44 years she is the best I have been to. Sometimes she is off base about stuff, but she does not mind me doing research and even suggesting sites for her to check out and read. She is humble and dedicated to helping me with my health issues. This woman CALLS ME to see how I am doing. How often does that happen? Anyway, good for you. I hope that you can find out something soon, to set your mind at rest.~~Tamye

Hi and welcome both of you guys to the board.
You will find that so many other people in this group have suffered years of being blown off (I was one of them as well) before they were ever taken seriously or found a dr. to finally help them. I cannot tell you how much I UNDERSTAND THIS. I have been sick since I was a child and have had been diagnosed with everything under the sun. Allergies, asthma, IBS, epstein Barr virus, CFS, Fibro (even tho I had no fibro trigger points) to name a few. I had bizarre treatments (like tree bark injections, vitamin infusions, and colonics), special diets, special tea's, herbs, accupuncture, hypnotherapy, the list goes on, all claiming that they would help my illnesses and get me better. They NEVER did and my parents spent thousands of dollars trying to help me feel better. I was so sick and miserable. I knew there was something wrong but not one dr. would listen to me. I was depressed because I was SICK yet they thought I was sick because I was DEPRESSED! It wasnt until I had a routine chest x-ray for an oncology appointment (I had cancer but that is NOT what was making me so sick) that found a mass in my chest which, after having open heart surgery (at 33) was found to be auto immune related (called a thymoma). The surgery basically broke my body and I became the sickest I had ever been. It still took 4 different dr.s to figure out what was wrong with me.....They all knew something was wrong but didnt have a clue as to what it was. I was finally diagnosed with Antiphospholipid disease (APS) and now have developed lupus as well. I have probably had this since I was a young adult, but because dr.s are so easily convinced theres nothing wrong with you because of what initial blood work shows, they rush you out the door feeling more helpless and hopeless then you did before you walked in. It is very depressing and I know the feeling. You wouldnt believe the things dr.s have told me...The thing of it is that if one dr. looked at all my different blood tests & results throughout the entire time I was sick they would have seen something was definitely going on with my immune system. This is why I think it is SO IMPORTANT to get copies of ALL your BLOOD WORK results and keep them with you. One day I went through all my blood work to organize it and found I had previously had 2 positive ANA's, a positive anti-dsna, speckled pattern test result, you get the idea. Throughout the years there were signs indicating a disease but because a dr. didnt have them all infront of them they were clueless about everything I had had done in the past. I know this is off the topic but you need to know that auto immune blood work is not always accurate. It can be like hitting the lottery. It can vary day to day and most rheumatologists dont understand this. The ONLY reason I am on meds today is because I found a rheumy who truely believed there was something wrong with me and it wasnt fibromyalgia (as he too said I had no trigger points). He tested me with a very specific APS blood test (as APS can mimic lupus symptoms to a T) which not many dr.s even know about. It came back sky high 3 times in 3 months and when he started me on plaquenil the numbers slowly went down and I FELT BETTER!!! This was the only blood test that was abnormal. I had Horrible headaches daily, numbness and tingling in my feet/toes/hands/fingers, and every other lupus symptom except for the malar facial rash (fevers, night sweats, joint pain, fatigue, feeling like I was dying). PLEASE make sure that you have been tested for APS by the Beta 2 Glycoprotein blood test. You DO NOT have to have a clotting event to have this auto immune disease.

Im sorry I got off the subject and now my little one woke up so I dont have time to write my full response. I do get the nose sores, exactly how you have described Irish. The only thing that helps them is a steroid cream I have been given. TAKE PICTURES of the sores if you can so you can show the dr. Sad, but necessary. I had to take pics of the sore I had on my tongue so my rheumy could see that it was a lupus lesion.

Flares can last a couple of hours (this happens to me when Im in the heat, even a hot room), days, weeks or months. But, if it last longer then a few weeks usually the meds are not working properly anymore. I cannot tell you how much better I am on the medication cocktail I am on right now. Im on 3 immuno suppressants and its not fun to be on these but at least I feel like I can function again and not like Im dying a slow and miserable death. Really have to run but just know that if you need any advice//support//encouragement/questions you have me to help you. Im just a click away. If you want to know more about APS you can email me. I know what your going thru....BTW...my rheumy of 10 years gave me a shock 4 months ago when I was still feeling sick on the new meds telling me he thought it was psychological now. I was crushed. I felt the same symptoms I always had felt. None of them were psychological. I went to a new rheumy who increased one of my drugs and within 3 weeks I felt better! It wasnt in my head, it was that I wasnt on a high enough dose of one of the drugs he had put me on. even good dr.s can give you inaccurate information at times. Gotta run
Hugs

Luv, you are on 2 of my boards I go to. I am gonna email you if that is all right. I firmly believe that I have lupus now but I have seen so many doctors and they have all not seen my previous tests. They all think I am hypochondriac because I have a legit mental illness---bipolar disorder. Well, I have been stable on meds for 5 years but docs dont get that. Even my pdoc (psychiatrist--check out the bipolar board after midnight if Ryan will wake up late the next day and see how many people are yakking away about their bad pdocs!!!) thinks I have some major health issues that need to be addressed. Anyway, everything you are saying I have experienced. This was a major eye opener, when you mentioned that you will have flares when you get hot, even in a hot room. Well you see I was at my moms house this past week and she and my dad keep the AC so high and its always so hot. Well, I was feeling sick off and on and then my last day there, Sunday, I could not get out of bed till after lunch. I was feeling sick to my stomach, my bp was high yet my pulse was only a t 53 bpm, my eyes hurt, my head hurt, I had just a general feeling of "yuckiness". Actually at a couple of points between 4-5 am I thought I was going to die. I kid you not. I felt that bad. I was actually praying that my children would always be close to God and not be too saddened by my death. No, I was not being "psycho" because of my bipolar, I was being very, very sick. This morning I woke up very sick as well. Feeling sick but now with the sore leg muscles and thigh muscles because they think I have PAD or CAD. Also they think I have fibromuscular dysplasia. (Isnt this our other board?) Do they have anything in common? I know that my doctor is testing me for lupus but (this is scary) he is testing me for a lot of stuff dealing with adrenal cancer and thyroid cancer. He felt around on my thyroid and I know that it always feels very tender.

Well, the silver lining there is that I have a good friend who had thyroid cancer at the age of 19. She had her thyroid removed and had to go to Houston from Victoria every other week for treatment. Well now she is 45 years old, been married to the same guy she was with back then and their son just graduated from high school this past year. So I guess, hopefully, I will be ok.

Anyway, I really do want to email you because I need to compare notes with you---you wouldbe surprised how much we have in common, except you live in a prettier place than me!!! Well, take care and I will talk with you soon via email. Give Ryan a hug from me!!1

Hi ! Just got back from Dr. appointment and I am being referred to a Rhemy! I know I shouldn't be excited, but for the first time, I had a doctor really listen to me and to what was going on in my body. She said that I should not have had years of feeling overall like crap, and we will work together to figure it out. I almost burst into tears.

And yes, I have been to the point of being so sick that I thought I was going to die. There have been a few times telling God, just take me. (Fortunately, I have a good life insurance policy.. jk)

A few months ago, I could not lift my head off the pillow, and I could not keep anything down for 3 days. My husband went to the pharmacist to see if there was something they could recommend. Liquid Tylenol for adults.. Who would have thunk it? He doesn't let me kids near it in case I need it.

Heat and being in the heat kills me, I end up with a headache that almost ends up with me getting violently sick and being in bed for at least two days. I have had multiple bout of heat stroke. I just need to be aware of my limitation, which really stinks when you are on a cruise or even at Disney World.

I am so thankful to know that I am not losing my mind!! Thank you!!

A Rhuemmy diagnosed me with Lupus and or RA, last week. I have had the nose sores for years. Didn't realize it was linked. That's what I meant. "Welcome to Lupus" Half the crap that I have had most of my life, thinking back. Miscarriages, Cancer scares, Just being sickly most of my child hood. It all makes since. I have had this for a while. I hate it that yall have this. I don't wish this on my worst enemy. I am glad though that I have people that can related to what I am going through, and hopefully what I say. Friends tell me that sometimes I say things backward...Brian Fog.
So if I say something that makes no sinse at all....well you know what's going on. What does a Vitamin D deficiency do??? I am on Folic Acid now.

Okey...Mwagner, I wish you would tell us your fisrt name because I have to keep going up to see how you do your name. Even though I have talked to you lotsa times. Mines Tamye or since my online name is irishrooster you can call me Irish since a lot of other people do. Anyway, I am sooooo happy to hear that about your new rheumy. It made me want to burst into tears for you. Maybe just maybe things will start looking up for all of us. I know that if we all keep supporting each other that we will make each other stronger, stronger women are better women because they get things done and feel really good about themselves. Women who feel good about themselves will often just plain ole feel good period. So anyway, keep on keepin on as my dad used to love to say. If your tests are negative do not give up as I so often have. Keep pushing. Remember you pay their bills. That often helps me. Now you have someone good hopefully you will not have to push so hard. Let us all know as things go on....

Ronda, you are so funny!!! You have "brian" fog right now? And exactly WHO is this "Brian" and does your husband know about him??? That is soooooo "brain" fog!!! I do the same thing all the time. My brain fog is me doing things like saying, "can you get my whatchamadoodle off of the thingamajig" Luckily my mom also has brain fog so we have always understood each other and known what we meant. My poor husband when we started dating would go crazy trying to understand me...I most have been pretty hot back then for him to stick it out with me!!! Now he always knows what I am saying sometimes before my mom can get it! (BTW I was saying "can you get my purse off the table?")

Vitamin D can be a major problem and since it comes from the sun a lot of lupus people dont get enough of it. Well I have not been dxed with lupus but since I hate the sun and flourescent lights (most nowadays are full spectrum...just like the sun). It can make you very fatigued. My hair dresser is from CA and she loves the sun so much. During the winter she gets sad and fatigued. She takes 10,000 i.u. of Vitamin D a day and she says it is like getting a dose of sunshine. When I talk with her and I am sounding sad she will tell me she is hanging up and not talking to me until I promise to go take my daily dose of vit. d. It does seem to help. I have stopped taking some hormone cream (not menopausal yet but have some screwed up homone issues) because I have heard they are bad for PAD and CAD which they think I may have. Anyway, the cream always made me feel happier and more content and now I am not taking the cream I feel sad and discontent. However, if I remember the vit. D I will feel better. I dont think you can get large doses of Vit. D in a pill form so I use drops. You can get them at a good pharmacy or health food store. I dont know Ronda, out where you live you might have to order off the internet. there are some good sites that are very legit. Let me find the source i go to since i cant remember it right now and I will get back to you with it. its one of the best on the net. Take care! Oh yeah, folic acid is not the same.

Hi there!

My name is Melissa.. :-)

My brain fog is terrible.. keys, dates, times. Some times watching re-runs and movies is like watching them for the first time again and again.. My husband has gotten to the point where he thinks its funny..

I have to write notes on post its, put appointments in my Blackberry, my Yahoo calendar and my calendar on the wall so I don't forget.. I even use my palm... yes, on my hand, to write on to help me remember..

Vit D~ My doctor is giving me a script for 50,000 per week in a capsule. She said it should help me immensely..

My husband and I have been together for 18 years so he has dealt with so much in taking care of me. I am so grateful although I know I can drive him crazy too! My kids, 18 and 13, (both boys) are very understanding especially when the headaches hit because they usually knock me on my !@#.

I am thankful for new friends who understand!!!