[kathy67]

Hi Everyone!
I stumbled onto this site after trying to figure out what is going on in my body! I am not new to some other community forums but was glad to see this one for Lupus.

My current diagnosis is Fibromyalgia, spinal osteoarthritis, cervical stenosis and on and on. I began a search because some new things have been poppingup that arent usually associated with Fibromyalgia.

First, I attended a conference in Orlando, Fl. in January. I was feeling fine all day, but at the end of the day I spiked a fever and had mouth sores. I mean this popped up so fast it scared me. I had chills and felt very sick. I had to postpone my flight back because I was feeling so bad. These sympyoms subside in about 36 hours and then I was fine. Fine for me means I am awake and joints feel a little better. I thought I had just picked up a flu bug and thought nothing more of it.
Then I had another episode of the same thing. Chills, mouth sores and sores in my nose. These nasal sore spots hae been around noe for about a month and is not healing up.

Then last night, got the chills again, spiked a fever and had alot of trouble getting a breath. My chest felt very heavy and still does this morning. Extreme fatigue has been with me for about 2 years now.

Sorry for the long post, but an introduction of my woes can go on for pages and pages. I have been seeking a diagnosis for about 3 years now and wonder if it may be Lupus. I have had the ANA test and that was negative for Lupus.

Anyway, if you have read this long post then I thank you. Just wanted to say Hi to all and would appreciate any feedback you may hav for me.

Thanks so much,
Kathy

 

[Maia]

It does sound as if there may be potential sun sensitivity going on now - and if these symptoms continue then it's certainly worth rerunning the relevant autoimmune tests periodically to be sure nothing has evolved. I certainly would not take one negative ANA test as proof you don't have lupus or another autoimmune disease.

I hope you have a good rheumy already treating your fibromyalagia, but if not you may want to seek one out or get a second opinion on your new symptoms and whether your old ones could possibly mean more than what has already been diagnosed. It is difficult to get a lupus diagnosis without a positive ANA, usually it will only happen when there is a positive skin biopsy for lupus or other autoantibody tests are positive (or kidney biopsy shows it too I guess!).

I think it's worth a further look at... especially given the change in symptoms recently.

 

[LolaLola]

I was diagnosed even with negative bloods, but they did turn positive eventually. You definitely need to have these tests re-run. The bloods can take a while to change, and you can feel very ill meanwhile. (Just my experience and that of my Daughter). I have Fibro as well and a few other things.
x Lola

 

[macfamily53]

I want to welcome you first of all Kathy and say i am glad you found us.It is always very hard for a diagnosis of any autoimune disease.Don't give up on some kind of diagnosis.I was diagnosed rather quickly but then like six months after the rhueme i was seeing at the time decided he was not sure it was lupus .That was rather frustrating to say the least.I went to another rhueme at a University Hospital and someone who knew a lot about lupus and she said it was defiantely lupus.She said the lesions on my face was one of the things that told her it was that for sure.So try to get yourself a good rhuemotoligist if you do not already have one.Good luck and keep us posted on your health.There is a lot of wonderful people in here to help you along the way.

Tammy

 

[Taree]

Hi Kathy

You must be feeling so frustrated! Just want you to know I'm thinking about you and hope you feel better soon!

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