I only have 3 "flags" and I'm trying to convince my mind that the doctor must be right and get over my denial.

My 3 "flags" are stiff and sore joints, ANA positive (speckled, 1:40, as if I even know what this means), and Complement C3 about 10 below the normal range.

I am wondering - is this really the early stages of Lupus, or is it possible the doc is jumping to conclusions?

Either way, I took my first Plaquenil with Lunch and will be struggling all weekend to ween my 11 month old cold turkey...

Thanks for any and all replies - I am trying to jump out of the denial stage and move forward...

-Debi

Jodi

I see some of your profile pics have you out in short sleeves and getting the rays! Somewhere along the way I was told to cover it up, that the UV rays worsened the symptoms.  Any thoughts please? -- Living in Phoenix and dressing in long sleeves & pants is horrible in the summer! HOT HOT HOT

Thanks!

So I'm going through the stages of grief all over again. I think I've known, deep down, that it was lupus. I've skipped denial, and gone straight to anger. This wasn't in the plan! I'm so glad I found you all. I'll see what news my rheumy has for me on the 13th of Sept.  I will have been on plaquenil for 3 months by then.

It's 3:40 a.m.   I can't sleep, but I need to try, so I can go to work in the morning. Or to see my counselor. Or to stay in bed & pull the covers over my head. I wish it was all just a bad dream.

Gail

Thank you

I am a smart person, and I had such hopes for my future.  I wanted to be a doctor.  I have a degree in literature.  If I don't have my brain what do I have?  I really don't want to go on if I am going to be like this for the rest of my life.  I am so scared things are going to get worse. 

Help me please

Does anyone else have this issue??

I haven't been on in a while. My husband and I just moved back to Texas from Chicago. I started new job that is very high stress and long work hours. I typically work from 8-7 which for a normal person might be fine but I feel like I am getting sicker!

I just need some advice when we first moved here in May I was actually starting to feel great. I have been on all my meds for about 7 months now I was diagnosed with SLE in December. I had a few weeks off before I started my new job and plenty of time to rest. Probably a month after starting this job I started going down hill. My joints started bothering me a lot, and the extreme fatigue has kicked back in.

Does anyone else have a problem with this when they work? I don't know if it is the stress, or sitting at a desk for 9 hours, or could it even be the light at work?

I am feeling really hopeless and upset right now. I am only 26 years old and I don't want to have to quit my job but I am really getting a lot worse.

Not to mention I got a new Doctor when I moved here and my first appt with him was really upsetting. He basically told me that he wasn't sure it was Lupus and that it seemed to be more of Sjogrens and that he was going to have to decide for himself! I left in tears the thought of having to go through everything again is just more than I can bear right now.

The reason for this visit was to discuss the intervention and counseling for her. I told her about the loss of my love child a few weeks ago. And although it was not planned my boyfriend and i are completely in love and prepared to take on marriage and a child if the opportunity presents itself. My mother told me not to have children because i would just be like every other girl (slut she said) who are popping out babies without a care.

When I was 19, I began  having seizures and muscle spasms. I was vomiting and bloated all the time. I was drinking a beer everyday and didnt understand why I was loosing so much weight. I was finally diagnosed with Celiacs disease and two bleeding ulcers. I also had to have my throat lazered because I had fungus growing up in and closing up my tubes so i was not able to swallow.

After learning how to manage my Gluten Free diet, I began to feel so much better but still had leg pain and burning feet. I thought it was my calluses so i cut them off. It felt better for a while but then my boyfriend kept asking why i would get so hot and sweaty. For the 3 years we have been together he has asked me that, and I never noticed. I just never knew what was wrong with me.

Within the passed month I found out I had the tissue disease that happens with lupus. I have yet to get the bloodtests done but I am already on the medications. I am on plaqenil and prednisdone (steriods to heal the affected parts of my body). I've been healing so fast for every injury thats happened in my life and its causing my muscles and tendons to relax but its very painful. I have thought of trying massage therapy but every place  ive called doesnt want to deal with the scoliosis and the lupus and the broken hip.

I am also on supplements because I have a Vit. D deficiency. I take 1000 units a day and calcium magnesium and zinc,  plus a soya lecithen supplement. I am trying my hardest to stay healthy and take a walk every day but since monday I have not been able to do anything because  of the stress.

I have had constant fevers and i do not want any one of my friends nor my boyfriend to see me like this. I have been hiding  with various close relatives other than my father n mother. I am so embarrassed of being in pain in front of them and my boyfriend cant stand that he cannot help me. He shuts down and cant come near me because he cant do anything for me. his dignity is shot and I have pushed him away all week. I want him to be happy, not worried and stressed about me. I am in love with him and he has been here for me through every surgery and every hospital visit for every flare up and every time i need him. He is my beneficiary, health care proxy, and my emergency contact.

I feel there is too much laid upon him, but he wont have it any other way. He wants to know and cant deal with me pushing him away. Hes very worried and upset and angry with me at the moment. I have not talked to him or seen him since monday night when i kicked him out  of my apartment. He was very very angry for what my mother has done to me and what she has done to my life to try and ruin it. I  know it sounds harsh and like i may be overreacting but to go into full detail about everything she has done you wouldnt believe me.

After she told me monday to not have kids, she sent me an email of her best friends grandchild that has just been born and how she wanted to be a grandmother. After monday I decided I was done with letting her interfere in my life or sabotage my relationship with the best guy i've ever met.

I ended up spiking a 104 fever and for me thats high because my body temp is usually 96 or 95.8. My doctor said there has been a flu going around and i just have to stick it out but if monday rolls around and im still not feeling well to go in. They said not to hesitate going to a hospital over the weekend if  i get a high fever. I think with all the stress going on this week it caused me to have a flare up, or maybe it is the flu and its affecting me so badly because of the lupus but i do not know.

There is also a chance i could be pregnant because i am not on birthcontrol and the condom broke over a week and a half ago and i should be recieving the time of the month this week. I am worried and scared and embarrassed because of my pain. I havent read into  alot of it, just some basics but i think if i read too much i will get very scared. I feel like im dying. I stood on a scale today and weigh 95.6, I have never looked at a scale and been so scared in my life, I've never seen those numbers appear. I usually weigh a healthy weight of 120 for me and within the passed few weeks i lost it. my friends are starting to worry and so is the family.

I dont know what to do anymore. or who to talk to. I feel like i need to write a will before its too late. please if you have any  input feel free to leave a comment. have a wonderful day thank you  so much

So, I have very low complements (c3 c4 and total), consistently high dsdna, ssa, ssb, and now a lot of protein/white blood/red blood in the urine.  I guess my question is....can this still be mild? 

Is the biospy painful?  I have to say, this is the first time since I've diagnosed that I'm very scared.  Any input would be greatly appreciated   Hope everyone is feeling well.

I was diagnosed with Lupus this week.  It was a bumpy road but my rheumy has finally diagnosed me with Lupus.  Some of the tests are confusing as my ANA is highly positive both Homogeneous and Speckled patterns, the next is negative and the third is positive.   All my symptoms add ups especially the butterfly rash on my face along with the crazy joint pain that goes from my hips, toes, knees, hands, etc...  I suddenly need 2 hour naps every day and have no energy.  I have been home this summer with my kids.  I have had no energy to do much with them.   We are going on a cruise next week, and I was desperate to find help as I felt just terrible.  I have learned the past two weeks there is no other way to describe this except "I feel like crap."  That is my phrase for the month.  Today my rheumy gave me to steroid shots, and a script for Plaquenil.   After the shots, I already feel a bit better.  He did give me a script for vicodin for the cruise in case I need it.   My family has been ultra supportive and concerned and I appreciate all of their advise.  But these message boards are great.  Finally people who really understand and can relate.   I don't think anyone really has a clue how terrible one feels during a flare up.  Mine has been going on for 2 months now, it started after my father passed 2 months ago.  My hips ached, and I was tired.  I then had a head cold that lasted for a month and my joint pain spread throughout my body.  I attempted to exercise... bad idea.    Yoga seemed to help though and I will continue that and as I am coming out of the flare I will become more active.  We have 5 kids and I need to stay active.   I have found so much comfort tonight reading all of your posts and seeing there are people that go through this every day.   I look forward to reading your stories as well ! 

Just wondering if anyone else out there has trouble sleeping?  Since this is all happened to me, I've not had a complete night of sleep without taking something to help.  I'm frustrated, tired and weak physically....  I really would prefer not to take sleep aids, especially since I've never had to do it in my life until now.  Thoughts, suggestions I am wide open.

Thanks,

I have been reading on this board for a little while and have decided to take the plunge...I was diagnosed by surprise on 7/14  on my 3rd meeting with my Reumatologist. I started having bad shoulder pain in February that I THOUGHT was from an injury that I hadn't noticed having. This was in both shoulders. I also had been exhausted and sleeping during the day regularly and also having headaches. The joint pain spread to wrists, fingers, knees, and sometimes ankles. I visited my GP who did a test for lyme and RA. I had a positive RF factor, but a weak positive. Also a slightly elevated SED rate. The GP sent me to a rheumatologist because I was still feeling mysteriously crappy. That referral came in May. July 1 I met my rheumatologist. She took a long history and said she was 90% sure I had rheumatoid arthritis. More blood was taken. I was given a list of meds to consider. The following week I saw her again. She wanted to take more tests because my blood cell count was very low. Called me back the next week and said I had a very high ANA titer. Took more blood. Tested for antidsdna and antism antibodies. Called me back to tell me they were positive. Diagnosed me with lupus. A disease I knew NOTHING about. So I've been reading a great deal. The thing that gets me is the unpredictability of it all. Im on hydroxychloroquin and 500mg of Naproxen daily right now. Still have painfull joints, am avoiding sun. I would like to know where lupus will take me...organ involvement, nothing too bad? Blah. I have four young boys (11, 9, 7, 5) and very little energy or patience for them right now. And none of them nap and its summer vacation. Ugh. I still exercise with regular walking and Aikido (martial art) twice a week.  I feel like crap but I'm still moving about...

OK enough rambling. Off to piano and ukelele lessons...

How do you know how bad the lupus will get???

Do you consider, or has Lupus been a progressive illness for you? 

I realize it's chronic, but what I am wondering if it tends to progress over time, with each flare does it get worse? It seems like mine has gotten worse over time, thinking back to when I didn't know what it was and I can't help but wonder what the next flare will bring. I know of people who have not had a flare in 20 years! 

Just interested in perspectives on this. 

Thanks

Stacy 

Since I'm new here I thought I would just jump in and say hello!

Dx: SLE 8/2009, Plaquenil, Methotrexate, and Etodolac with an occasional short term dosing of Prednisone

Well, I was diagnosed with "mild" (sure doesn't feel mild to me) SLE last Wednesday but I'm not a 100% convinced it is Lupus....or maybe I'm just in denial. This is a scary disease but I'm glad to have a diagnosis or at least a name to all these horrible symptoms I've been having for the last 8 years.

It seems most of you are very knowledgeable on the disease so I'll give you a quick list of symptoms and my lab results and see what you guys think.

-fatigue (i have an 11 month old who takes 2 naps a day and i usually sleep with her both times)

-joint pain that moves from joint to joint (no swelling or redness)

-tiny red dots all over my skin (not petecciae as they are on top of the skin, not under)

-muscle pain, weakness (have a hard time holding up my arms to fold laundry and a hard time walking up the steps) and tenderness especially in my upper back and shoulders

-my feet hurt so bad some days i have to sit on a stool to cook dinner

-had a few fevers over the last few months, kinda felt like I was coming down with the flu or something but never did

-GERD and some other GI issues that are recent

-have recently started getting headaches (had them baaad when i was a preteen and late teens)

-I think i have some kind of vasculitis because I have this small black spot on the tip of my toe and my nails look like they have tiny red dots underneath them. (rhuemy did not seem concerned)

-hives on and off

-i have had protein in my urine, especially during my pregnancy without high blood pressure. i also had microalbumin twice.

-red palms (but they dont change colors with cold or anything)

-neurological stuff.....mixing up words, putting the milk in the cabinet kind of thing, cant remember anything, etc., etc. etc

My CBC and comp. metabolic panel were perfect, so obviously no organ involvement at this point.

Compliment levels were normal, antiDNA, RNP, Smith, RF, and Sjogren's were all negative.

Anticardiolipin was positive (not super high, but positive) CCP antibodies were in the strongly positive category and ANA was positive with a homogeneous, speckled pattern, but was only 1:160.

I'm sure I am missing a few symptoms but those are the main ones. I guess maybe I have a very mild, faint, barely there malar rash (seems like its mostly broken capillaries). Thanks for reading all this and I appreciate your responses. Oh, rheumy started me on Planquenil, still haven't taken it....the side effects are scary!

My quality of life is zero- I am too weak and tired to do anythng enjoyable.  I only leave the house for doctor appts.  It is a struggle to even get dressed.  I haven't been able to exercise in months.  My memory and even personality changes have occured!  I used to be a very passionate person and all of it is gone- it's so strange.   

Does it get any better?  I just started Cellept on Monday and only noticed more aches.  I have a 13 month old son and I cannot even change his diaper.  Family has been helping while my husband goes to work (otherwise he has to stay home with our son).  I am trying biofeedback to control stress, but it seems everything just gets severely worse! 

Please help. 

The problem I am running into is that I had a gastric bypass just about 2 years ago & I am unable to take steroids or NSAIDS due to the increased risk of a GI bleed.  My family doctor is afraid to prescribe anything for my pain for this reason.  She is asking me to wait until I see a Rheumatologist & let them prescribe something instead.  Unfortunately, I am unable to get an appointment with one until 8/9, even though my family doc called on my behalf to get me in sooner. 

I am in extreme pain & have lost quite a bit of time from work since this flare started.  I am stressed out, frustrated, confused but, most of all, in so much pain I don't know where else to turn.  I am afraid that I may lose my job if I don't get a handle on this soon.  They have been wonderful so far & very flexible with me but, I can't say how long that will last.

I am sorry for such a long post but, as you can see, I am very confused & frightened.  I would appreciate any advice you all may have. 

If you have any spleen stories - please share.  Thanks

I had two major bouts....and feel the 3rd one coming on.

Anyone else experience this?

Thanks!

Gammie Pamie

Thanks!

Thanks

Rose

I want another tattoo as well. THey heal ok?

In May, I had an arthritic reaction to an antibiotic for a sinus infection.  Since then, I've been exhausted, with severe muscle pain.  I finally went back to the doctor last week for the fatigue.  She ran this round of bloodwork.  Now, suddenly I have high titers for ANA, homogenous, speckled, nucleolar and centromere patterns, anemia, EBV markers, and elevated SED rates.

Until the antibiotic reaction, all that was wrong was a sinus infection and some mild depression from recent stress of losing my job.

I just don't get how this never registered before on the bloodwork, and now I've got a potentially fatal disease.  I'm distraught.  I have a 5 and 8 year old, a great husband and wonderful friends.  I feel like I'm about to lose everything. I can't believe I may not see my children grow up.

Can someone put this into perspective for me?

I have been sick with random and spread out pain, easily susceptible to illness, and have a hard time breathing for years.  The doctors have always doubted I had anything, but I just acquired a new doctor who noticed very high ANA levels and referred me to a rheumatologist.  The rheumatologist conducted tests and gave me a preliminary diagnosis of Lupus.  I was scared but thankful to finally have a diagnosis other than being basically told I was a hypochondriac by doubtful doctors (especially since my father passed away young from a pulmonary embolism, so I'm especially sensitive to these issues).  

To follow up further, the rheumatologist sent me to a cardiologist to rule out the possibility of any heart problems due to having frequent chest pain on my left side and having had severe scarlet fever as a child.  So it came as a terrible shock when the cardiologist said a few days ago that she thinks I have a weak heart valve.  My EKG came back normal, but she said she heard something suggesting otherwise.  Now she scheduled me an appointment for an echocardiogram on Monday to determine what's going on, how severe it is, and if it will require medication or surgery.  The final option has me terrified out of my mind.  I also don't know how Lupus and such possible heart problems interact.  

Basically, I'm just very scared, this has all come at once, and I have no idea what to expect.  I'm a 24 year old female, so this is a complete blow to anything I would have thought.  I'm also supposed to be leaving for a conference overseas in less than 2 weeks that I have been planning for the last year.  Now I'm terrified to get on a plane, especially since the cardiologist said she still has to determine if I should or not.  I would be heartbroken if I couldn't go, but I'm even more terrified of what would happen if I did go.  I basically just feel very lost right now and could use any insight that anyone here could provide.  Thank you sincerely for reading.