Possible rash butterfly 🦋 or not : Not a very goo... - LUPUS UK

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Possible rash butterfly 🦋 or not

Buckley123 profile image
14 Replies

Not a very goo pic of me 😂

My cheeks become red and flushed as I start to feel ill this is how I know a headache is coming I also get neck pain and joint pain around the same time generally feel rough and like I have flu coming or allergies sore eyes ect

I never used to get colour to my cheeks so to others maybe minor ( the camera makes it look slightly less ) but to me it seems off opinion welcome ?

How is everyone xxx

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Buckley123 profile image
Buckley123
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14 Replies

Hi Buckley yes i have a similar rash the surface of my skin sometimes is smooth and sometimes not. I think everyone has a difference type of rash and i would definitely get pictures of when it happens for you as it’s evidence when you get to see anyone. Bless we all now know the medical profession need photos especially when we are not always believed. The one thing that’s helping me at the moment is the one food vegan diet except for organic free range eggs which I love. I am only drinking mineral water and am Juicing everything. it’s pretty restrictive and have spent a small fortune on herbs, vitamins and but I am seeing a huge difference. Try the highest factor sun block and be very careful what you use on your skin. Try coconut oil as it’s really helped my skin. I hope your skin calms down and your feeling well soon. Take care. Elena.

Buckley123 profile image
Buckley123 in reply to

Thanks for your reply mine is smooth but it comes and goes comes when I don’t feel well and disappears when I’m okay 👌 the last time I shown this to a doctor he said okay what am I looking at which to be fair is a fair comment but to me it’s a big change to anyone else it maybe normal and it always comes just before I feel ill xxx

in reply to Buckley123

The fact that the rash appears when your feeling unwell is significant it indicates that there’s something internally that’s triggering it. Are you seeing a good rheumatologist and have you had every test done. Why are the GPS not acting. It’s just so infuriating and I can imagine quite stressful for you as you deserve the answers but are clearly not getting them. Keep your diary with photos as it may give you some clues as to what’s going on tell them again it only happens when your feeling unwell. Have you had all the blood tests done and what are you being tested for. If you haven’t already done do get your medical records as it may just give you a clue to what’s going on. Keep a food diary as mine would sometimes flare up if I had eaten certain foods. The drs sadly are not doing their job properly. You are left to do your own research and left to figure it all out for yourself. With auto immune diseases the symptoms are so varied and it’s not a one size fits all. You would think by now the medical profession would have figured that out by now it’s clearly not rocket science. Forgive my rant as I have a low tolerance for the nonsense that comes out of the mouths of drs and specialists. When you go to the drs show then the list. If one drs offers no help move on to a better one. I was lucky enough to see a brilliant lady dr she was great but sadly she left the surgery after 3 months It’s trial and error but if the drs are dragging their feet and fobbing you off look at other drs, going private or trying a few alternative practitioners as they have really helped me. I hope within a few months you have moved mountains and have left no stone unturned on finding answers to every question you have. Wishing you a great week. take care. Elena.

Buckley123 profile image
Buckley123 in reply to

Thanks elena

Yes I am due to see dr Cruz via the nhs after my privet appointment last week he believes me finally but this has been a struggle to get to this point and expensive my first test was a mri of the brain which I received a diagnosis of ms my mother also had ms and died a few months before so as you can imagine I panicked I’ve spent thousands on tests ect they have also found some weakness in my legs shoulder and neck inflamed Oesophagus enlarged lymph nodes in my neck muscle try and jolting brain lesions which are now to be believed not to be typical if ms however all of the above I’ve had to pay and fight for so I share your low tolerance for the medical profession.

All my bloods so far are negative however dr Cruz did say some times bloods let us down I think mctd is a possibility as it has now been mentioned twice.

I ache all over today following my headache yesterday all my joints and muscles are tired 💤

Xxx

in reply to Buckley123

Omg Buckley your on the Wars lass what a carry on but thank heavens your seeing Dr Cruz. Did you say he does a private consultation of do do you have his number as I would love to see him. My appointments with my rheumatologist are going nowhere. If it’s not all sorted out I am looking to go to Leeds or London. Have you been tested for fibromyalgia or M.E Chronic Fatigue Syndrome if not I would definitely get a printed copy tick off all symptoms and ask your go and your rheumatologist could it be an issue. I have both plus they think it could be lupus too. Get your rest today and if anything works for you just let us know. Take care. Cheers. Elena.

Lisalou19 profile image
Lisalou19 in reply to

He is definitely well worth the visit. I ended up seeing him privately after years of hitting a brick wall. The blood work he carries out is really extensive x

Buckley123 profile image
Buckley123 in reply to Lisalou19

What do you think to my face 😂😂😂😂

Lisalou19 profile image
Lisalou19 in reply to Buckley123

It’s bloody beautiful 😍😍😍😍😂😂😂

Lisalou19 profile image
Lisalou19 in reply to Lisalou19

I know what you mean, to others it doesn’t appear as significant, but to us who have it , it is very noticeable and can be irritating. My rash burns.

I can see it in your photo.

There’s so many of these Illnesses that cause face rashes, so keep photos to take along with you to D Cruzzy 😘 x

Buckley123 profile image
Buckley123 in reply to Lisalou19

😂😂😂

Buckley123 profile image
Buckley123

Thanks Elena

I just phoned the London lupus center and booked a appointment with him best money ever spent tbh I also had one with dr kaul which was quicker but no where near as good or effective so if I were you I’d wait to see doc d Cruz it can be a bit of a Wait but worth it xxx

in reply to Buckley123

Hi Buckley. Thank you have now rung the London hospital now trying to track down his secretary but if he’s the best which I think he is then i must be patient and wait.i also asked them can I be referred on the NHS and was told i can. Who knows some time in the distant future I may just get somewhere. Was very sorry to hear about you losing your mum and the worry and upset it has caused you. I lost my mum to dementia and I too am having memory issues. Drs love to say stop worrying I cringe when they say it. Good luck in the future I hope it all goes well for you. Cheers. Elena.

Buckley123 profile image
Buckley123

Yes I’ve seen it a lot worse tbh it is slightly darker in person however not so bad as I’ve seen on others

But I do get this before I start to feel ill I know a headache is coming joint pain feeling generally unwell 🤒 all started with this flushing of the cheeks cx

Buckley123 profile image
Buckley123

No just a top this was Sunday it wasn’t even hot 🥵

I don’t know why it happens tbh just trying to peace it all together thanks x

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