If not sunburn then what is it?

[Jar1973]

Hi everyone

I had to be out in the sun yesterday for under 30 mins and it wasnt until late afternoon hubby commented on me being sunburnt.

However while it is red, it is not even remotely sore or tender, nor is there any heat in it! Interestingly my face and neck and arms didnt go red or hardly very much. Just across shoulders and chest.

It didnt hurt to have a warm shower nor dry with a towel.

I have suspected for a while that sun exposure could worsen my symptoms like fatigue and breathlessness and joint aches. But i couldnt prove it. Doctors just dismiss my comments or ignore them.

But this is odd. I have been sunburnt in the past and for a few days it is painful and hot. This is not.

I have no SS diagnosis yet due to seronegativity. But this is weird right??!!

Is this a photosensitive rash? It is not spotty or itchy. Just looks like sunburn but doesnt feel like it.

Any ideas?

[Jar1973]

I would like to add more pics but can't see how.

[Megansheart]

My first thought was whether you were on Plaquenil for SS or Lupus, as very limited sun exposure causes reddening and 'burning'. Are you on any meds which could otherwise cause rapid reddening such as Doxycyclin?

I suppose it could be a photosensitivity reaction although I have never researched that. Did you get any rash on your face?

[Jar1973 in reply to Megansheart]

Hi Megansheart

Thanks for answering. No i am not on any meds at all. Not even vitamins. I have no diagnoses but suspect Sjogren's but seronegative so far. Not had a lip biopsy as specialists think there's no point due to seronegative results and clear ultrasounds.

I have had some redness on on my face forehead, chin and cheeks that is flat and only gets redder if my fatigue amps up. Otherwise it just felt ever so slightly burny after being in the sun on my cheeks but is no redder on this occasion that i can tell.

My forearms were slightly itchy last night and looked slightly blotchy but is ok today.

Odd body! Lol!

[wsmith]

Hi there, I know with my age (52) and skin I tan quite quicky. I love the sun and have been very naughty in the past with sun bathing as a youngster so my skin remembers those days and just tans quickly. Can have the same affect after 30 mins. Always feel a bit better with a bit of colour..so hoping that's what it is for you. 😊

[Jar1973 in reply to wsmith]

Dthanks for replying wsmith. I think it must be a rash tho because it was red not brown. I have never gone straight to tan in my life...i figure even going straight to tan is sun damage and a normal body response should still be heat and at least discomfort. It is still red to pink a week later and has been slightly itchy. I had a significant increase in fatigue and muscle and joint pain and stiffness as a result of it which is still settling after a week, not quite back to my normal symptoms. Seems logical that it is photosensitivity. I will just have to soeak to the specialist says!

[Jar1973 in reply to Jar1973]

SEE what the specialist says i meant lol! Maybe affected my brain too😁😁

[DJEUSA]

I have Sjogrens with Photosensitivity and my blood work is negative for it - your picture looks more tan here but you said red - you can have a Lip Biopsy done that proves Sjogrens. I turn red in the sun, get itchy, foggy mind sets in, get chilled inside like getting the Flu - then drink a hot beverage climb under the blankets and get hot and all my joints hurt. This goes on for 2 or more hours - depending on how much time I was in the sun ... then the exhaustion follows ... then that passes after sleeping ... it was suggested it was in my head 24 years ago - but repeated episodes were proof enough for me - talked to others with Lupus who experienced much the same ... I also have the same reaction from Flourescent lights. I can use SPF Sun Block which allows me 15 in the sun and up to 1-2 hours exposed to the lights in the stores. So basically I stay inside - have solar protected windows in the house and car ... I have learned to adjust and cope - I went to a Rheumotolgist who specialized in Dermotology in Philadelphia, Pa who recommended Nuetrogenia 50 SPF with Helioplex in it and it worked for the store lights but near so well in the sun. She was involved in a study using some form of light treatment to desensitize the patient but there was more risk and less benefit and the study was dropped ... so SPF and coping seem to be the best way to not get sick - a real bummer BUT less iLLness ... I can go out in the evening sitting in the shade to watch my grandson on swim team but the heat stirs things up - but I will take the chance to enjoy seeing him but it’s a tedious situation and tiring. Sorry to hear your problem - hope this does not scare you - watch - live - learn and figure out what works for you - everyone seems to be affected in so many and different ways - the best to you - Diane 😊

[Jar1973 in reply to DJEUSA]

Thanks for sharing your own experiences...that certainly sounds extreme but like you i have read others accounts re photosensitivity and while specific effects vary from person to person, there is certainly a clear theme!

Yes it was red and looked just like sunburn but my phone camera is awful lol! I didnt get any itching initially. That started after 24 hrs and was only mild and settled by the next day so maybe just dry skin. The systemic symptoms flaring is a reoeated experience for me too following sun exposure that i have noticed over the last 18mths to 2 yrs. At first i thought it could be the sun but maybe it was something else (doubt) but i avoided the sun. But i have been caught unprepared a few times like spontaneous chat with neighbour over the fence for 15-20 mins and even if there is no obvious sunburn, i still get the systemic flare of symptoms. So a pattern has emerged.

But i have never had something that looks like sunburn but doesnt feel like sunburn (no heat no pain or sensitivity) followed by increased systemic symptoms until the last 18 mths to 2 yrs from my last major flare in mid 2016. I have always felt drained if i spent time in the sun but this is beyond that.

I suppose i had read people talking about a rash from the sun that is spotty raised and itchy. But mine is flat, red and not that itchy, just mildly, and i didnt know if it was a rash or not. I have rwad medical websites for lupus saying their reaction to UV can look like sunburn or rash.

I will just have to ask a doc. I know what sunburn feels like and this isnt that. Will see what they say!

Thanks to all of you for your suggestions and sharing 😃

[DJEUSA in reply to Jar1973]

Plaquenil ( Brand name only for me ) worked in the beginning for sun and flares - the sun thing got worse but the regular flares were much better. You might ask your Dr about taking it. I have used Plaquenil since 1998 which I think helped me not get worse and make sure I have my eyes checked every year. My one daughter and law broke out in a rash from using a tanning machine to look tanned - she was getting or had got Mixed Connective Tissue Disease from tanning so much - which was fatiguing and turned red but not itchy. She used Prednisone and Plaquenil to control and periodiately has to go back to both Meds - fatigue is still her worse symptom. My daughter developed Raynard disorder like I have also. I also developed RA, OA, Fibromyalgia, and Spongilitis in my low back - things come and go over time ... some symptoms improve and other were less troublesome ... no telling so I watch and take care to be as well as I can be and getting enough sleep has been a real help. Don’t ignore your symptoms because you don’t have a definite DX - I was actually DXd with Lupus by my first Rheumotolgist for 11 years when I moved and my blood never showed any signs of Lupus so he tested for Sjogrens - symptoms were all the same and science/doctors are not always right - not blaming just saying listen to your body as frustrating as it all is ... By the way I had Solar Protected clothing, hat, gloves, and an umbrella - brand name Cool A Bar which gave me good protection - expensive but gave me more freedom to go outside ... Diane 😊

[Jar1973 in reply to DJEUSA]

Wow thanks so much Diane! Very interesting to hear about your family too. I think i might push to trial plaquenil as i dont have inflammatory markers so prob not need prednisone. ..happy about that actually lol! But plaquenil seems the least worst medicine haha!

Interestingly i was reading an article this morning about tanning beds possibly triggering these diseases but i imagine a predisposition is required first, not that it causes it. Thank goodness i dont do tanning beds or i might look like this 😈!!

Best wishes to you. I will try to remember to return to update. I hope to see my neurologist again in April, awaiting appointment letter, and have been referred to a new rheumy on 20 April.

Thanks again, Jodi