After discussion with both GP and specialist rhuemy nurse I am left a little confused. My diagnosis is a shifting picture but over the last few months I have developed the above (title after any sun expose) but recently, after taking all precautions of sun hat, sunscreen, parasol with 50F, if I have sat out with friends for more than a couple of hours I feel absolutely wretched the next day. It will be a tears and fatique laden day on the sofa. Is this normal?
GP unsure, S nurse not sure - thought I might have become allergic to the sun. Not really sure about that really as I never get a rash anywhere else. I'm sure I have read somewhere that it is quite common for people with photosensitivity /lupus/UCTD. Any experience, ideas welcome as beginning to feel the tendrils of hypochondria being advanced my way!!!!!
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RosieA
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Yep sure is for me Rosie.if I go out in the sun without a hat after about 30 mins I get a headache.i cover up ,wear a hat,have reaction lens ,etc and i still suffer in the sun .thing is uv photo sensitivity is common in lupus and some of the drugs we take are known to trigger it too.uv rays are all around so we should also avoid windows etc and fluorescent lights.my joints ache and I feel drain.my eyes also flare up and burn.after a few days indoors everything eases and I dont seem to suffer as much in winter. Kind regards SML xxx
It's a real ....... isn't it. I stood in my bedroom after a few hours out the day before and burst into tears at just not knowing what to do with my body - it just felt strange. Awful. Dreadful as it is, I must admit to looking forward to some colder and duller days. Thank you and kindest wishes. x
I love being outside....love walking but just cant do it the same.i really enjoying the change in the weather to cooler and cloudy.over the years lve learnt how to deal with things.when the hot weather was forecast I knew it's a doing nothing spell.im glad they are testing your kidney function as 60% have kidney involvement without knowing.i have class v kidney involvement.ive learnt to go with the flow and not to stress or overthink things too much.we are always here to support you xxx
Ah thank you. One test was positive, the next done at GPs was negative. However, I misread the letter when it said an early morning sample, it was a little later, so quickly phoned the GPs, the usual, receptionist etc. They all reassured me that it wasn't a problem. Spoke to Specialist nurse yesterday - she said it was no good so to do it again - rotten luck, had hoped to put that worry to bed.
You, however, sound so well adjusted to the impact of this disease on yourself. Something to emulate I think and I thank you for your support. I have heard that there have been some significant leaps forward in treating kidney involvement recently. I do so hope that you are recieving the best of support.
I too love to walk my cockapoo - she's just had a massive bath having found a very muddy puddle to lie down in!!! x
I have 2 springers who love mud and water.the beach is our favourite place to mooch.they rarely get a bath as they have equafleeces which are a god send as they keep the clean and dry ( even if they swim) or will dry them if the are wet.
The only way to be sure is by biopsy.i had one on 2018 and the mycophenolate I take is also prescribed for kidney disease.rheumatology dont look after them now as i have a kidney specialist.i watch my salt content and potassium....got to go easy on the bananas and greens.
I've been through alot over the 11 yrs inc the death of my OH in a rta.ive had to get on with things and I find it easier to work with my illness then fight it....after all I cant change it.lupus inflammed my heart in 2014 and put me into heart failure so I had to keep stress to a minimum.xx
Oh bless you. You have been through so very much and I am so sorry for that. I can't imagine but my thoughts and warmest wishes are with you. Dogs are in many ways a Gods send. They get us out and give such unconditional love. I also find playing my classical guitar helps to get things back in perspective and reduce stress levels. xx
Thank you. Its like everything else life throws my way I just take it in my stride and get on with it.id be lost without my 2 they are seniors now and have got me through so much and as you say keep us moving.i find their energy and enthusiasm infectious even on miserable days.i cant always walk them far but I'm coastal so plenty of space to run with a ball.👍how lovely to be able to play the guitar .I knit,crotchet and occasionally sew which helps keep me sane especially in winter when I hibernate.with 2 grandchildren there is always something to make 🙂.ive just had a log delivery so thats todays and tomorrows spoons spent but as worn out as I am I know I'm sorted for winter if we ended up back sheilding x
Good idea. I think we ought to get our wood in soon too. So wish I could knit - dreadful tension, so I embroidery or do needlepoint. Needlepoint on iffy days as it needs very little concentration. I love the guitar and it takes my mind to a different place. Yes, going back to being extra careful (hum! not sure I've stopped really) seems to be on the cards for many of us. A seconday school in a nearby town has sent home 160 of a year group + 4 members of staff after an outbreak!!
Have looked up the doggie fleeces and am off to find a tape measure. They look fantatic. Thanks for the recommendation. xx
I bought mine by the crate this year. .(Ash) was sceptical about the quantity but its filled 3 1/2 dumpy bags .smokeless arrived last week.if my hands are sore I crochet as you hold less weight.ive not really gone out much since sheilding ended been to aldi about 3 times ,drs etc.we are ok here at the moment 🤞
My 2 have the equafleece suits with the legs in . I dont wash them every time unless they are very dirty but they dry really quick.left to dry the dirt brushes off .when I do wash them quick cycle 40 degs no conditioner it's easier to wash them then the dog especially if you are feeling very fatigued.they are meant to be a snug fit but even though millie has arthritis in her front paws they are easy enough to get on and off xx
Oh Rosie so sorry I know how you feel about the tendrils of hypochondria creeping in, it’s a horrible situation, nobody wants a label but equally no one wants the uncertainty of not knowing why these things are.
Part of me wishes id just kept taking the multitude of pills thrown at me for this symptom that symptom but then with mor symptoms and stronger I wanted to find out, indeed so did gp.
Long story but that all gone am on my own , apart from this lovely forum, but hopefully as you have go and nurse they will help figure it out. I get what looks like malar rash but don’t know that it is and when it appears it seems worse at night or maybe that’s just because of light differences or it’s not a malar but something else. Either way I don’t know what it is and that’s frustrating. I feel awful in the sun and when it first started happening I’d ace feel sick giddy And swell and all could do was lay down and sleep,don’t know if sun or heat but I take precautions now so as not to feel like that . I hope they figure it out and don’t let the uncertainty make you crazy, you know what you feel you just need the answers, not having the answers doesn’t make you hypo, that’s a different Illness, just how we can be made to feel.
Thank you stiff19. Funnily my malar rash comes out in the evening - it might be worth taking a photo of yours. I did and dermatology have diagnosed it from those and a phone consultation. You are right the uncertainty is very disconcerting. Just had more bloods done and albumin / creatinine ratio test as one of them was positive for some protein loss in my kidneys. SOOoooo disconcerting isn't it. x
Yes I might do that,though only have phone number not email. I’ve recently had bloods done no results yet, I’m hoping my iron levels ok as always low and we’re supposed to have been done again after 3 months of iron tabs in lockdown. Vit d too as always low though been outside a bit even if in shade. I worry about my kidneys weirdly as pains either side of middle spine and urine troubles few clots last week but seems better since clots except for low abdomen discomfort. It is disconcerting indeed especially when you don’t feel well, the symptoms of rashes swellings etc you can see but it does worry you what’s going on inside. Not a nice place this no mans land , despite having a gp I don’t wish to go to, I am functioning at present be it with symptoms so feel in current climate guilty of my looking for help🤷♀️ It’s all a quandary . Fingers crossed for you that you find answers. Do you ask about bloods or are you just informed I’ve not ever seen my blood results just told.
I won’t know results of recent ones I guess until new telephone consultation .
Try not to worry too much easier said than done . Like you within 24-48 hrs of taking myself away from the sun I feel better 👍🤗x
I always ask what they are, then look them up on Labsonline (great resource recommended by NRAS) that way I rarely get a suprise. Gosh! Might it be worth an opinion on your clots - perhaps with the specialist nurse! Fingers crossed for your blood results too. xx
I wear a. Baseball cap when it’s sunny. I used to love the sun,but can’t tolerate it for long.i have to tell myself to get inside after a short time or I will suffer.i always put sun cream on.
It frustrates me as I so used to love the sun so much.take care .
Thanks Oshgosh. Yep, got the hat etc but you are right I am also beginning to ration my time outside - even on a rainy day (got a malar rash after gardening in the drizzle !!) When I feel rotten after being outside I'm normally back on track after 48 hours. Best wishes x
I can’t be in the sun for a long time . And yes , because of my Lupus. The next day of having exposure to sunlight . I feel like a train hit me . A lot of medications we take for Lupus , and RA cause photosensitivity. I was driving my car for a few hours on a sunny day . I noticed my left arm was completely covered in blisters. I never thought to apply sunblock while driving. My legs didn’t blister, but they did tan , I was wearing shorts . So lesson learned the hard way. Now I apply sunblock if I’ll be driving for a long time .
It's perversely interesting really. You sadly blister on parts of you and not others. I don't blister anywhere or have any reaction anywhere except for developing a malar rash some hours later and feeling, as you say, as though I've been hit by a train. I wonder if it because of the type of Lupus / UCTD that we have. I wish I understood more.
ANA test and kidney test result should be back to day. Perhaps a little more of the puzzle will be unravelled.
Yes, sun block, sun glasses and hat are now a part of my daily living - deep joy. Not so sure about the look with my wellies - I suppose I shall just have to cut an excentric figure in the village. x
I saw my rheumatologist today. He recommended I see a urologist, because of frequent UTIs and blood in my urine . And also a Nephrologist for my kidneys. I can’t catch a break. I have issues with my liver , and pancreas. Now possibly urinary tract , or kidney issues 😩
Absotutely no need to apologise. You must understandably be rather upset - I would be. It's a ...... it really is. Let's hope your appointments come through as soon as possible and you get the treatment and support you need. I'm on a mission to track down results! Appear may be split between GP and Hospital.
P.S. It's very healthy to vent, so vent away. We all have broad shoulders. xxx
I was diagnosed with subacute cutaneous lupus (SCLE) in 2017 n I'm extremely photosensitive. My skin is the main organ affected with this type of lupus n I get all kinds of rashes everywhere except my face funnily enough..I've not had a Malar rash!!
I have to take all the usual precautions..both indoors n outdoors!! I'm ok at home now coz we've sorted out the lighting but I had a flare up caused by a five foot flourescent light without a cover on it that's in our kitchen!! I have to wear hat when I go for appts coz the lighting in hospital makes me feel sick!!
If u have a look on lupus UK there's a link to eclipse which is very informative about this subject..even recommending the most appropriate light bulbs to use indoors.
It is the weirdest thing..I've never been a sun worshipper as fair skinned but this whole photosensitivity thing has turned me into some kind of lazy vampire!!
It's a standing joke with my family now...oh it's a lovely day today...yes it is I'll be staying in then. 😹I'm only happy when it's raining!!
So yes I'm an eccentric lady too..hat ,scarf,long sleeves, trousers,shades,gloves too (watch the back of your hands)
It's the wierdest thing n so hard to explain to friends but everyone knows about it now.
It's funny but whenever anyone asks if I have any allergies I say flucloxacillin n sunlight..I always get a sideways glance!! 😹
U will learn your own intolerances with this illness..we have lupus in common but we all experience our own form of it!! We all have to learn what triggers symptoms n then incorporate them into our new normal!! That's why keeping a symptom diary is so useful. 🌈😽😽Xx
I am joining you as eccentric lady number 2! I too have SCLE. It's so hard to be positive about sunny weather. The hotter and sunnier it is the more clothes I have to put on! I have to watch where I sit indoors too as windows and some lighting are not my friends. But it is so good to be among people who understand and every now and again someone suggests something practical that really makes a fantastic difference. I think generally we have to maintain a sense of humour about our appearance on a sunny day but occasionally it does get you down especially if you still have an itchy rash after a wardrobe misfunction.
Bamboo gloves are great for driving, I keep a pair in the car, a pair by the front door and a pair in my handbag! Backs of hands get so itchy and sore if exposed.
If I am asked about allergies I say mustard and sunlight!
I find that I stay in during the summer as much as possible..really tricky is this time of year when it can change from cloudy n raining to really strong sunshine within a short space of time!!
I'm a nightmare in the car (passenger seat) when the sun shines in the windows I literally act like a vampire, hissing, muttering profanities under my breath,uuuurghhhh!!
Bamboo gloves sound interesting..I wear cotton gloves n I cut the ends of the fingers off so I can still grip things..use phone etc. I've got white ones for indoors n black ones (magicians use them apparently😹) which I wear outside!! Match that with a pair of purple slippers coz I can't wear shoes!! OMG!! What is she wearing?!?!😹🌈😽😽xx
Gosh you are very photosensitive. Travelling just within the UK must be quite problematic. These diseases really do manifest themselves in so many different ways. Just tried to get result of my last ANA and kidney function test!! UrGHHHH they're not sure whom they've gone to. x
It is all so very disconcerting if people change the diagnosis. How can they say it's all Fibromyalgia? Yes, today I was out at 11.00 and tried to do a little gardening. Big mistake, started to get a headache and as you say the 'solar fatique' has hit me. I am amazed at how many people suffer from more than one syndrom. It really is all an eye opener. A world I didn't know existed a year ago is suddenly one that I am increasingly familiar with. Luckily we have these amazing people on these forums to keep us sane. x
Yes I agree I'm not happy at all about that, if I stopped my hydroxhcoychloroquine I'd test postive again.
But doing so would cause bad flare.
Oh no bless you, there hard deal with solar flares. Of fatigue.
I was exactly same as you when found out I'd no idea even what lupus was once did my late dad informed me he had lupus his mum lupus and rheumatoid arthritis her mum to.
Dad had polymyagia rheumatic a with discoid lupus face neck only.
Here chat when able.
It really helps having such forums I totally agree there.
I found at time it reduced tons anxiety just chatting others.
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