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Life With Lupus

Lupus since 1985


#1

I was diagnosed in 1985. I am a married, mom of two, gramma of two. Since shortly after diagnosis I have gotten Arthritis both Rheumatoid & Osteo, Raynaud’s, Fibromyalgia, IBS, Chronic Pain, Neuropathy, and Degenerative Discs.
Recently I experienced a new “flare” that was nothing I had before. In July 2018, I broke out in a rash, it was everywhere and extremely dry irritated skin, nose, mouth, lips and throat. I thought I had an allergy but it was diagnosed as “just a lupus flare”. By August I was coughing a lot, really dry cough and trouble breathing. Sent to respiratory dr, and he put me on puffers but he really has no idea. Well it’s now Jan 2019 and I am still coughing, trouble breathing as well advice all the dryness. Nobody has a clue what’s wrong, it’s so awful. I go to Rheumatologist in March and I am hoping he can help me.
Anyways if anyone has ideas I would be grateful for any input. Thank you & thank you allowing me to join.


#2

Welcome, dlh! We’re glad that you found us, but sorry that you had to come looking for us. It sounds like you are in a bad way with so many autoimmune problems. It tends to be like that: people with one autoimmune illness tend to “collect” others. “Nobody has a clue what’s wrong, it’s so awful.” And that is so common among people with ‘Rare conditions’.

Let’s just hope your Rheumy can help. Best of luck with it all

Merl from the Moderator Support Team


#3

Thanks for the welcome. I think it might be either Sjogrens or SLS because nothing else really fits. It’s always Luous related. Hopefully will know in March.


#4

As I say DLH "…that is so common among people with ‘Rare conditions.’
It truly can be case of ‘…well it could be this but then it could be that too or it could even be that…’ I lost count of the number of could’s and differing diagnosis I received. After presenting repeatedly and not obtaining any real answer, just guesses I had a scan.
“Ohh look what we found…” says the dr, like it was some great big surprise. I’d been telling them for years/decades there was an issue only to be written off time and again. I was so annoyed/angry/frustrated. They made out I was ‘crazy’n’dacoconut’ until they could prove it with a test, with a scan.
Stick with it, don’t lose hope, get the tests done and get that confirmed diagnosis.

Merl from the Moderator Support Team