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289 Views 7 Replies 4 Participants Last post by  Viridian
Ok. I keep going from being totally convinced I have lupus, to not at all so I'd like to ask about a few symptoms that I dont know some answers on and see if anyone can give me some feedback, or whether they've shared the same things, past or present. :)

Rash: two different types. One is red 'spots' in patches, not normally itchy but can be when healing. Doesn't leave a scar. Can come out mildly on my neck and chest but worse and more frequent on lower ribs, tummy and sometimes lower back. Can travel (ie. part next to it will become inflamed, while the other end is healing. I had one that started on my back and has now stopped at my mid left abdomen.).
The other is normally set off by a bite, or something like that, and looks like a group of spots until it reaches a 50p (approx.) size, then seems to heal in the middle, while a ring around it continues to grow, and spread. Normally very red, sometimes raised. Again, doesn't really itch unless it goes along eg. bra-line. Will heal at origin and spread like other rash (again doesn't leave a scar). Also confined to ribcage/tummy, but once had it on the side of my eye (temple) and went quickly with steroid cream.
So 'non-lupus' as far as I can see with these rashes is that they aren't normally on the face, neck or chest, only sometimes. And I have no idea about them moving! Also, not all bite/sting/whatever marks result in a rash. They can normally be just mildly inflamed and then heal normally.

Red face- Classic shape, sometimes travels down one or both cheeks to my jawline too. Becomes red, hot and swollen (but normally I feel that the swelling and redness is a lot worse than it actually is when looked at in a mirror) when in sun, stressed, done exercise, or sometimes just sitting down doing nothing! (I an understand the first three, it is the last one that puzzles me!) Have had 'redness' on cheeks for at least 8yrs. Now have some awful thread veins. I didn't think the malar rash in lupus lasted that long though, and father has red cheeks (sorry Clare T, just wanting to make sure everything is there! :lol:).

Eyes-sometimes a bit itchy, and extremely prone to styes, but I wouldn't class them as dry. Same with my mouth. I have some sores on the fleshy parts at the front (both top and bottom), sometimes get a sore on the side of my tongue, and have always had really bad teeth (I have dentures now!), but I wouldn't say my mouth is very dry.

Joints- Ache in esp.knees and ankles, sometimes right arm, wrists (had to have them bandaged when I did my g.c.s.e's as all that writing wore them out!), but never so much that I can't walk, etc. Sometimes shoulders hurt too. Also, get shooting pains sometimes down calf/arm. Lower back 'goes' every now and then (also with shooting pains down at least one leg) but could be a past horseriding injury (they said that ligaments were stretched, etc. but nothing major-this was when I was about 12/13). When my back goes, I am virtually immobilised. Hasn't happened for about a yr though.

Headache - At back of head, been there for 3 wks now. I can exactly pinpoint it! I thought Lupus headache wasn't at the back though, and was more generalised.

I'll leave it at that for now. Any help duly appreciated!
Thanks! :bigsmile:
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WOW Viridian,

You have a lot of symptoms there. The only thing I can say is to visit you doctor about all that ails you. If necessary,, divide symptoms up per doctor. Dermatologist for skin issues. rheumatologiest for joint issue etc.

Since we are not doctors here and even if we were i don't think we could/would diagnose someone from posting symptoms.

I can only imagine the discomfort you feel. And i'm sorry you have to go through all of that.
I hope you get help soon.

Take Care
Hello Viridian :)
You are in effect diagnosing yourself by seeking to rationalise and reason that all your symptoms can be easily explained away. I can assure you that there are plenty of doctors who will do that for you. Of course if you want to trivialise or dismiss your health concerns that's your prerogative. I could counter every single point you mention with reliable accurate comments, but to sum up you are making lots of false assumptions. Maybe none of this is lupus related, maybe it has nothing to do with any autoimmune connective tissue disease.

The only way you can start finding out what's the matter and embark on the road to better health is to see the best doctor you can access, get blood tests done and a professional opinion. It can be as important to rule lupus out as to rule it in.
All you need to convince yourself of is that you are not as well as you should be and that you want to feel better and have a better quality of life.

I'm sorry. I think I wrote my post badly. I'm really not trying to excuse my symptoms, or trivialise them. I definately know about the doctors out there who can do that! I just wasn't sure whether certain things were associated with lupus. eg. I've not read about rashes travelling, or people having styes, etc. and I already have a long list of symptoms so I didn't want to cloud my first app with things that may not be important.
When I have my app with the rheumy, I'll mention everything and then let them decide.
Thanks to both of you.
Hello Viridian and friendly greetings

Maybe I expressed myself badly but your post starts by commenting that you go from being totally convinced you have lupus to not at all and my point is that you don't need to convince yourself what you have. It might not be lupus per se but some other autoimmune connective tissue disease.

I was astonished when the Shirmer test showed my eyes are exceedingly dry because although I knew about the test and had considered the possibility I never for one moment thought they were.
The malar rash can come and go and can be permanent, so you are making assumptions there too. Maybe your Dad has a touch of lupus too, sub clinical or something.

It is a good idea to have a list and description of your symptoms, in fact it is essential, but I'm sticking to my guns in saying that you are as good as diagnosing yourself and the main decision you have to make is whether to get a professional opinion or continue to suffer.:hehe:

All the best
Thanks Clare, and you are right. I guess I feel a bit powerless to do anything at the moment and grasping at what I can do until I see a rheumatologist. Like I said, I'll make a list, and take it with me. At least that way I might get a dx on everything, whether it's lupus or not or a combination.
Thanks again!
bloodwork is important too for a dx of lupus, so you need to have that done as that will give important information about the likelihood of lupus.

have you seen a rheumatologist for testing ?


Haven't seen the rheumy yet. I've had bloods with gp though. One was a few months ago, one a month ago, one two weeks ago (although that wasn't ANA, just function tests and fbc), and now I'm having ANA, Lupus anticoagulant and a couple of others tomorrow. The first three lots came back 'satisfactory' (apart from a slight raise, and drop in ESR - but nothing significant). As I have learned though from here, I will be asking the values of my bloods that I have taken tomorrow so I can take them with me to the rheumy. Ironically I'm feeling a lot better again today, just a few niggles - should've had the bloods taken lat sat! Lol!
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