What symptoms does sunlight cause in lupus folks ?

[Angelamarston1963]

Hi - I’ve yet to have a lupus diagnosis . One of the reasons Lupus was ruled out in my case was lack of photosenstivity . (Although I use to have sunlight induce migraine . Well today I was so looking forward to sitting in the sun when bang after only 10/15 mins I felt like someone had pulled the plug on my energy levels , pain returned to my joints & nerve pain returned in my legs ( I had been relative pain free last few days ) I had no choice but to take pain meds & retire to bed . Our thoughts observations would be welcome

[_bunty_]

Hi Angela

Have you had blood tests done? My GP suspected I might have lupus as I have kidney disease and epilepsy plus I’m quite deaf, and I was experiencing severe joint pain at the time, so he arranged appropriate blood tests and a rheumatologist appointment for me. The Rheumy confirmed that I had lupus from my blood tests - the presence of certain antibodies in my blood that wouldn’t be there otherwise (no idea what they’re called).

I’ve never been particularly sensitive to the sun, but then I’m pale as I rarely choose to go in it and stay in the shade when I can.

Lupus shouldn’t be “ruled out” because you don’t have all the symptoms - everyone seems to have different symptoms. I recommend asking your GP for blood tests which might show whether you have lupus or not. I have SLE, and although it’s very frustrating (I was diagnosed late last year) and hard to adjust to, getting a diagnosis was very reassuring and useful as it confirms that I’m not simply cursed with bad luck!

Good luck getting a diagnosis xx

Betsy

[Angelamarston1963 in reply to _bunty_]

Thanks Betsy . I have had numerous blood tests and one they use as a bench mark ANA was negative . I’m convinced I have lupus - butterfly facial rash , pain in joints , fatigue etc but I know a lot of these auto immune disease overlap and you can wait years for a lupus diagnosis . I do have numerous other health cionditions including hypothyroidism , two mini strokes , hole in my heart , fibromyalgia . Vit D deficiency and factor V Leiden . I’m waiting further blood test tests and a nerve conduction test . I’m very fortunate that I have a fab GP who had worked with me to find the right diagnosis . Although I had to pay privately to see a rheumatologist because my ANA was negative I did not met criteria for NHS referral . I suppose I’m like many people on this site - we know our own bodies and a diagnosis can often help us cope with our health problems . Thank you for taking the time to reply 😊

[_bunty_ in reply to Angelamarston1963]

Gosh you poor thing you’re juggling loads! I’ve also had a mini stroke and have a hole in the heart (this is also a symptom of lupus) and low vit D...

I know it’s easy to say, but just try to persevere and you’ll eventually get a diagnosis. I hope it’s soon!

Sending you lots of love and support xx

[_bunty_]

PS my dad had fibromyalgia and it gave him terrible rheumatic pains and fatigue - but steroids helped him a lot!

[Angelamarston1963 in reply to _bunty_]

Wow I didn’t know the hole in the heart & TIA’s are also connected with lupus ! I’ve had fibro for nearly 25 years (diagnosed just after my son was born ) I’ve managed with this joint pain , fatigue etc until late last year when I really started to suffer - knowing how my fibro affects me I just knew this wasn’t a fibro flare - that’s when I started to look for answers . Enjoy the rest of the weekend 😊

[_bunty_ in reply to Angelamarston1963]

Agreed - no-one knows our own bodies better than us! At least we're luckier than some of the other poor buggers on here who don't have diligent GPs - I've heard some dreadful accounts of people really struggling to get seen by the NHS, it's terrible!

You have a great weekend too xx

[Ianrussell69]

When I’m in direct sun light I get a sore red rash after 5/10 mins then headache/migraine followed by fatigue and a the day after I just feal lousy

[Chanpreet_Walia LUPUS UK]

Hi Angelamarston1963,

Many people with lupus experience a flare of their symptoms when exposed to sunlight. The most common symptom is for rashes to appear on the skin, affecting areas that are frequently exposed such as the face, neck, hands and feet. Sensitivity to light can also cause lupus patients to develop a migraine, nausea or joint pains; joints can become tender to the touch and swollen. We published an article on our blog about coping with light sensitivity which you may like to read here: lupusuk.org.uk/coping-with-...

To read our blog article on ‘pain management’ please click here: lupusuk.org.uk/pain-managem...

Although you haven’t been diagnosed with lupus, fatigue is one of the most common symptoms of lupus affecting around 90% of lupus patients. We published an article on our blog about 'managing fatigue' which contains helpful tips and information which you can read here lupusuk.org.uk/managing-fat...

There are specific tests and criteria that are needed in order to make a diagnosis of lupus, to find out what they are click here: lupusuk.org.uk/getting-diag...

Please let us know how you get on, wishing you all the best.

[Angelamarston1963]

Thank you . I didn’t get a rash just and overwhelming feeling of fatigue and joint pain it came on so suddenly I was quiet scary and disappointing had I’d planned to do a little gardening not retire to bed !

[Legos]

get the ana test done,

after being in the sun it zaps my enery and makes u feel like you are sick joints hurt too headaches ,sleepy,pink skin face and chest that will last 4 days from being out in sun for a hour with sunblock

[Janethaywood in reply to Legos]

Does this rash come on any other parts of the body? Reasons I’m asking. Is that I’ve. Recently been diagnosed with autonomic dysfunction, I have already got Fibromyalgia, periphal arterial disease & postular hypotension. Not including other less serious issues. Having suffered this for 5 years and being passed off as “ Menopausal “ it angers me now how this could have been missed. All the above started after I had surgery to correct a botch up angioplasty where the radiologist had actually crushed the plug into my femoral artery thus causing a blood clot.