I had urticaria a lot when I was a kid and teen. I mostly was OK, but working up any sweat I broke out at once. After gym class I always looked really weird, was red or spotty all around. I grew out of it and it was before the onset of "Lupus", that came when I was 26, after a major flu. I don't think I have angioedema.

My symptoms are; Dry eyes (I can't cry with tears because I don't have that much tear fluid) that caused badly scratched up eyes (my eye doc was horrified....), dry mouth, probably a little more saliva than the average Sjogrens sufferer, still I cannot eat dry food without a drink, then I would choke. My airways are very weird, started as a dry cough, but now it is like I naturally cannot rid of any phlegm or irritants so instead when it built up, I have really bad coughing spells where I cough up mucus and I get those maybe 10-20 a day and I almost daily cough until I vomit from pure irritation. My esophagus is constantly irritated with heartburn like pain and sometimes spasms while eating. On and off my salivary glands used to swell and I looked like a hamster, but that hasn't come lately.

I have the labs for Sjogrens (but too much saliva for the diagnosis), RH+, ANA+ (speckled), SSA+ and SSB+. Thing is I didn't develop any dryness until 2002, and my illness started in 1995. Which would put the traits of Sjogrens as a secondary issue.

Further I'm extremely exhaustable. I have chronic fatigue also. If I overdo it, I just crash, once I was in bed a week after effort (that time with fever and flu like symptoms but mostly it is just severe fatigue). It is probably the fatigue and lack of stamina that is the worst. Everything is so hard to do. And no matter if I push myself, I cannot build stamina.

I have hypothyroid, that is treated.

I stay out of the sun because it made me look like I was boiling. Else I'm very heat sensitive. Sun used to be able to put me into a fever mode, but not anymore, maybe it disappeared or maybe I'm much more careful.

I used to have sudden stabbing pains all over, mostly from soft tissue, it used to come and go, but I don't really have that anymore.

I have some joint pains but no swelling, I don't have a lot of joint pain but when I do it really hurts, oddly mostly in my toe joints. I also had adhesive capsulitis of my shoulder, came and went for years and finally my shoulder wouldn't thaw anymore, so I got mad at it and ripped the adhesion apart with brute force. I do that now if I feel it tries to freeze up again. I had a tad of cold, numb hands, but gotten better. I have weakness of my arms and hands that come and go. Sometimes my arms just hurt really bad from any effort and I can't hold things for long at all. Or in rare cases, my hands got so weak i could barely hold anything, and hands and arms would go numb (quite scary).

I have myoclonic jerks that came and stayed for maybe two years, almost totally gone. Breathing deeply doesn't come easy to me. Sometimes I have chest pain (severe stabbing feeling) but I'm cleared from any heart involvement.

I develop deficiencies like B12, B9 and iron despite getting a lot through food. I get all infections other people have, never fails. Usually flus and colds. Last flu I developed pneumonia and second last flu made me have 10 days of extremely high fever (had to finally go to hosp). I used to have maybe 5-7 infections a year but that decreased radically after I started the flu shot (Don't ask me how a flu shot can make me not have colds, that shouldn't happen). I also develop fever blisters on my hands. I even had H-flu once.

I don't have a malar rash, and I don't have swollen joints. I also have a negative ds-DNA. I have a decreased kidney function but not to any point where it bothers me. I used to have hair loss but it basically grew back although never to the thickness it was prior.

Since I developed thyroid stuff, I no longer have much fevers, even if thyroid is treated. I have a very low body temp instead. So I guess that "cured" the mild fevers I had not as part of an infection...

I understand if I don't have textbook Lupus, and I understand I have a little too much saliva for Sjogrens, but go from being diagnosed to a doc saying I have NOTHING.... I don't know... it just doesn't sound right to me.

I should be satisfied the GP will test for things, continue monitoring my very high ESR (which I guess I should just live with), liver and kidney functions (that could go bad i guess) so I just don't keel over and die one day. But I can't but feel frustrated. Not only do I have to live with this. I also have no name for it, it is "nothing", "basically asymptomatic" (doc's word). It's basically telling me I made it up, right?

My last doc that said I DID have Lupus and Sjogren's, just her saying that made it easier because then I was GOOD doing so well DESPITE having it. Now... I'm a bad person for doing BAD despite having NOTHING.

/end whine