What do you think of this facial redness in my ph... - LUPUS UK


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What do you think of this facial redness in my photo?

Spookyfox profile image

I have other photos that I would like an opinion on if it looks like a butterfly rash. I have many symptoms of lupus but I also have thyroid disease that caused me to have my thyroid removed. I have low cortisol, migraines, complex partial seizures, terrible exhaustion, bruising, hair falling out, positive for antibodies to DNA but not a positive ANA, and my red face comes with exhaustion and sun exposure. Sometimes is begins on on side of my face and spreads to the other. I can feel it beginning. It gets hot like a sunburn and I feel exhausted. It fades after I go to bed and rest. A few times I have woken up with it but mostly comes after a long day working, stress, exhaustion, and sun. I would appreciate any feedback.

16 Replies

hi spookyfox i think its look like a butterfly rash to me i had this rash before a year of my dignouse but i didnt know what lupus is so i thought its just a sunburn a year later the symptoms started to show up

Hi spooky fox

Your red facial rash is just like mine. My face feels hot when I'm flaring , it's leaving brown marks on my skin now across my face. It's good you have these photos to show consultants.

Are you diagnosed with lupus or trying to be?. X

Spookyfox profile image
Spookyfox in reply to misty14

My primary care physician believed it is Lupus. I saw a rheumatologist and he believes it is related to thyroid disease (had it removed about 6 years ago). I have had two positive anti-dsDNA tests but no positive ANA. I have a seizure disorder, thyroid disease, migraines, bruising, have had low iron in the past, low cortisol, severe heartburn / herd, nonstop lung infections that come from nowhere (I cough up phlegm everyday and my last infection came out of nowhere and was so quick and severe I coughed up blood for several days, joint pain, brain fog, fibromyalgia diagnosis, and redness that sometimes shows up above my wrist on top of my arm. The redness is always related to exhaustion and sun exposure. I am allergic to everything. Recently I had a mouth sore on the roof of my mouth when I was at the doctor's office for a check up. There was no pain associated with the sore. I didn't even know I had it. The most severe symptoms began two years ago when I began to lose balance and fall a lot. I could write a book. I don't want to have Lupus or an autoimmune disease but I don't want to go undiagnosed and untreated. Thanks for your feedback.

misty14 profile image
misty14 in reply to Spookyfox

With all those symptoms spooky fox and a positive anti dsdna test which is specific for lupus I don't understand why your Rheumy says thyroid disease not lupus!. Maybe you need another opinion?.

Spookyfox profile image
Spookyfox in reply to misty14

I am going to go for another opinion. Reading responses really helped me. My thyroid levels were very hypo but I have no thyroid and have constant problems keeping my levels normal. It's a crazy cycle. I have a neurologist, endocrinologist, allergist, pulmonologist, have seen a rheumatologist, and have a PCP.

Paul_Howard profile image
Paul_HowardAdministrator in reply to Spookyfox

Hi Spookyfox,

I agree with misty14 and think perhaps you should ask your GP to refer you to another rheumatologist for a second opinion if you are not satisfied with your current diagnosis and treatment plan.

It may be best to ask for a referral to a rheumatologist with a specialist interest in lupus. If you let me know whereabouts you live I can provide you with information about any lupus specialists we may know nearby.

If you would like more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

When saw the first rheumatologist my thyroid levels were very hypo. I believe he saw this and would not consider anything after this. I saw another rheumatologist at University of Virginia and my records never arrived. I met with an intern and the doctor came in and out and mentioned my fair skin and Irish ancestry and easy blushing, etc. It was so hot in his office I was burning up and yes my face turned red from the heat of the room but not like the pictures. I was told my joints over flex so that is why I have more pain in my joints. I was told to go to cognitive behavioral therapy to help deal with my pain, and go swim. Ha! I live 50 minutes from any type of indoor pool etc and work full time. And as far a cognitive behavioral therapy- Basically made me feel like he thought I was crazy. And if I am working full time and go home and crash every night, how can I go to therapy I would resent, don't need, and don't have the time and money for. I was so upset when I left. I was diagnosed with fibromyalgia upon returning to my PCP and neurologist. I started cymbalta and it does help. Prednisone makes me feel like a new person. I'm in Northern Virginia, USA. I will check out the packets. Thank you very much

Paul_Howard profile image
Paul_HowardAdministrator in reply to Spookyfox

Steroids wouldn't help if it was just the fibromyalgia by itself, so it suggests that there is some inflammatory condition present.

I'm afraid that I do not know any lupus specialists in the USA because I am based in the UK. I would recommend that you contact the Lupus Foundation of America for advice about specialists in your area - lupus.org/

Thank you! I sure will. I have been researching a lot. My PCP absolutely agree steroids would not help the fibro. Thanks for your kindness and information.

Exactly like mine which is a lupus symptom.

Same as mine ! Some form of Lupus !

If your doctors don't think it's lupus because of the negative ANA (I also have that), then you might ask them about erythromelalgia. That's what they said mine is. It is also hot like a sunburn. Mine comes on with heat/sun, alcohol, stress... I also sometimes wake up with it. Sometimes it's one side of the face, sometimes both.It's rare so not many doctors are familiar with it.

Spookyfox profile image
Spookyfox in reply to Goldyukr

Thank you! I will check it out!! Would love to post more pics but I have to figure out how.

Looks like mine. Docs always interested in selfies like this.

You may want to check a rare autoimmun disease called dermatomyositis.

Hi Spookyfox

This is just like mine looks. I tend to have a range of patterns/areas depending on what I've been up to and how I'm feeling generally 😐

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