its never lupus!

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its never lupus!

Postby kolakube » Fri Mar 30, 2012 6:39 pm

consultant appointment is SLOWLY rolling round...

after having very low vit D levels i've been taking advantage of this nice weather by a little sitting in the sun...

and my face has broken out with a rash, that gets worse after a hot bath/shower... its not clearly a butterfly rash but is on both sides and across the bridge of my nose...

and now i've half convincd myself its lupus.... i know i'm desperate for a diagnosis and clutching at straws a little. but i'm already very nervous about appearing an absolute hyperchondriac....

i've always had a tendancy to go a little rashy, and by bodies taking a little battering due to a flair up of TMJ after a dentist appointment, and the painkillers to manage it.

i'm so desperate to walk out of the rhumatology appointment with some answers and way to move forward, decide what to do about work, house, bills, life!
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Re: its never lupus!

Postby Ldyalb » Fri Mar 30, 2012 8:57 pm

Google Rosacea. When I first became ill with Fibro my Dr thought I had Lupus. Turns out I have Rosacea - it's a very common condition and mimics the malar rash in many cases. Mine is often worse after a bath shower, and flares up when I wash my face.
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
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Re: its never lupus!

Postby Nellyphant » Sat Mar 31, 2012 9:19 am

I have roseacea too. It's affected by heat of any kind including spicy food.
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Re: its never lupus!

Postby Ldyalb » Sat Mar 31, 2012 10:05 am

I've been lucky and can cope quite well with spicy food :-) it doesn't flare it up too much. Which is good news for me as I do like curry, enchiladas and chilis a lot. And they're some of the easiest meat dishes to make veggie so I basically live off them lol.

My downfall is that it does affect my eyes, I often get sore red eyes and get frequent bouts of Blepharitis and Styes :(

I was in a rush to go down to watch a TV programme when I posted yesterday, but here's some info on Rosacea:

http://www.nhs.uk/conditions/Rosacea/Pa ... ction.aspx

http://en.wikipedia.org/wiki/Rosacea
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
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Re: its never lupus!

Postby kolakube » Sun Apr 01, 2012 1:22 am

the not knowing is insanely frustrating....

roci(argh spelling) is far more likely....

my last doctor always talked about fibro (which is how i ended up here) my new doctors said they didn't think it was... which sent my mind on overdrive.

trying desperatly not to think too much till my consultants appt. (one day to go one day to go!) while trying not to pin too many hopes on instant diagnoses and cure lol....

but a bit of good news... i've just had the loveyist time with my campchair and trusty mug of tea watching some old friends get sillyly drunk. finally told people i'm not at my best, of work, and a little over emotional! and guess what?

everyone was lovelly, supportive, offerend to pick me up and take me to things (swimming tuesday, comedy gig wednesday), they NOW know why i've dissapeared of the face of the earth, have been a gem by ensuring i have a chair & am involved, can get there and back, ensure i can call dibs on proper bed space, carry my bags, & even give me extra coats!!!!

:) i dont think i've ever had a night this good without driniking, even before the mistery illness set in :) :)
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Re: its never lupus!

Postby Ldyalb » Sun Apr 01, 2012 8:42 am

If it is Lupus it'll probably take a while to diagnose as it is a difficult illness to pin down as it mimics lots of other illnesses, hence why they call it the disease with a thousand faces.

When I saw the Rheumy for the first time in October 2010 he took detailed notes of when the pains etc started, how long they lasted, how they felt etc. He also checked my joints, reflexes etc. When he was sure it wasn't an autoimmune disease he then did the tender point test for Fibro and I passed that. Took about an hour.

It is possible to have Fibro and something else like Lupus, RA etc. The main thing to do if he/she does say it's Fibro is to learn as much as possible about it, that way you'll have a better idea if you're having non Fibro symptoms too. Also - never assume anything new is just Fibro. Always see the dr to check.

I know how you feel, I'm 6 weeks (tomorrow) in to a 10 week wait to see a Rheumy to find out if I do have Psoriasis and Psoriatic Arthritis. The wait is driving me :crazy: I don't know when the appointment is, they should ring in the next 1-2 weeks to organise it 2-3 weeks in advance. I just wish I knew for sure that it will be on X date.

:goodluck1: with the appointment tomorrow :fingerscrossed: you get some answers :-)
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
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Re: its never lupus!

Postby Judy S » Sun Apr 01, 2012 9:41 am

I can't remember .. was it ever lupus, in the end? :lol:

I feel for you. Sometimes it's worse waiting for the dx than coping with one when you have it. I have one thought: Are you taking any drugs that might be interacting with the sunlight? I know many prescription drugs will do so, and have warnings on the leaflet about it, but also some herbs and alternative medicines, like St John's Wort, which is sold as a natural antidepressant.

See this link - http://www.alternative-healthzine.com/html/0300_2.html
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