Fun in the ☀️

[Buckley123]

Anyone else get this ? Went on holiday never again 😭❤️

[KayHimm]

Hard to see in on the photo. You should take this photo to your doctor as well as a photo each day it lasts. Note if it gets scaly, itchy etc. Most important, how are you feeling?

[Buckley123 in reply to KayHimm]

Thanks it was just hot only lasts until I go in the shade and it disappears which is really odd

I’m okay thanks got stress out yesterday so went to bed with my throbbing from my hips to knees and feet seems to happen when stressed and today I’m wiped out with headaches and aching face blurry vision hope to feel better tomorrow as I have hospital for emg I think it’s called muscle nerve test.

How are you xx

[KayHimm in reply to Buckley123]

I am doing well, thanks. You should definitely show your doctors and tell

[KayHimm in reply to Buckley123]

them exactly what happens.

[NeuronerdDoaty]

Yep

[Buckley123 in reply to NeuronerdDoaty]

Dose yours stay long mine only until I cool it off x

[NeuronerdDoaty in reply to Buckley123]

It depends. It happens if I get overheated or sunburn. Overheated just takes me until I cool off. A little extra sun can take 24-48 hours even though the extra sun is gone.

[Sara_A]

Yes!!!! Only last yr! I'm 40 yrs old and only got this for the first time last yr but really badly on my face chest and arms! Ended up having to triple my steroids on holiday and urgently seeing consultant when I got home. I look hideous for rest of hol like I'd been the idiot sat in the sun too long! It also made me flare as in pain and fatigue. At the start of the hol the heat was great for my joints I was up and down the stairs where I hardly can use stairs at home I felt that good.

But we wont be doing sunny hols again either!

[milkwoman]

Lupus patients need to avoid sun as it can cause flares. Also, if you are taking Hydroxychloroquine, that medication also makes one more photosensitive.

You can go on holiday but you just need to stay in shade as much as possible and wear sunscreen and protective clothing.

For me, just hot weather can cause flares (I can get really unwell... nausea, headaches, joint pain. fatigue, etc.) so I tend to avoid the high sun times of the day.

[Cjgj in reply to milkwoman]

Hi sorry to bother you this maybe a silly question but u gave been diagnosed with this lupus and suffer bad tummy pains and I am always tired a aching legs do you get these symptoms without the rash or only with xx

[milkwoman in reply to Cjgj]

I’ve never gotten the lupus rash. I’m just not affected that way but I will get physically ill if I stay in the sun or heat too long.

Are your symptoms only when you go into the sun or are you just taking about your symptoms in general? Have you been diagnosed with lupus (SLE) and are you currently on medication?

[Buckley123 in reply to milkwoman]

I’m on hydro 200mg atm I’m mid diagnoses due to bloods not playing ball the sun doesn’t directly affect me but I am knew to this trying to work out triggers mainly stress for me. I don’t really get rash just blushing of the cheeks and odd markings my symptoms seem to rotate in the same cycle ie headache redness of the cheeks muscle joint pain then swallow issue

My lymph-nodes go up and down neck tighten and becomes painful my twitches then start and then nothing and then it starts again it’s so strange that and few others along the way like dry eyes and tiredness xx

[milkwoman in reply to Buckley123]

Oh okay so you are asking about symptoms in general.

Lupus affects everyone differently and by the nature of the beast, it can can a varied range of symptoms at any given moment depending upon what system it decides to attack.

Common symptoms include joint pain, muscle weakness, headaches, GI issues, low grade fever, brain fog, fatigue, etc. You can often feel like you have the flu.

Your profile doesn’t say what your diagnoses are or what treatments your on or how long you’ve been on meds. Hydroxy needs to build up in your system so it can take 3-6 months to start feeling relief and up to a year to see full benefits.

I don’t know what’s causing your lymph node issues but as I said, lupus can attack anything it wants to. For me, I attacked my thyroid making me hypothyroid. I sometimes get a soreness in my neck due to swollen modules on my thyroid.

In another post you mentioned dry eyes - I have Sjogrens in addition to lupus so I can get very dry eyes and also headaches as a result. My current prescription eye drop (Xiidra) has been a godsend. I’m in the US and I know Novartis/Shire is working hard to get Xiidra worldwide.

Another post you mentioned restless legs (legs moving at night). My husband gets this (he doesn’t have any autoimmune disorders) and we recently found a homeopathic solution that he says works every time. At the first sign of restless legs he pops four tiny tablets of Mag phos 6x by Bestmade Natural Products (Amazon) and his legs calm right down.

In another post you mention Raynauds - does the cold bother you?

I’m guessing you are a bit overwhelmed at the moment and just want to feel well again. Well, you are in the right place. Keep reading, keep asking questions, keep a log of your symptoms to try to determine triggers - can be stress, can be foods, can be sun, can be meds. You are your best advocate and in time you will learn what works best for you.

[Buckley123 in reply to Cjgj]

I get pain in legs not stomach tho but it can affect anything tbh xx

[Melba1]

Most of us definitely need to avoid the sun. I've ended up in hospital after every sunny holiday and my rheumy and nephrologist told me I had to cancel my last holiday because the lupus was too unstable. So for this holiday, I've bought a burkini!!! Covered head to toe, my family is half amused, half horrified but I love it because I can still go swimming and be with the rest of the family - and hopefully won't then get a flare. You're much younger and prettier than me so would probably find it harder with not wearing a bikini but I see the burkini as a double bonus, sun protection and it covers up my steroid cellulite thighs and old wrinkly knees - win-win!!!

Hope the rash goes down quickly xx