Not from the UK....hope that's OK.

[JanaeRadford]

Hi, my name is Janae. ::waves:: I've been having major health problems for a little over four years, but the sun reactions are relatively new (about six months). Glossing over all of my other symptoms, I'm really struggling with sun sensitivity right now. I'm having reactions with indirect sunlight, on overcast days, with me just sitting in my living room. I didn't even know this was possible until it started happening. I was forced to cover the windows of two rooms, relegating myself to my bedroom or office during daylight hours.

I feel like the world's lamest vampire, and with how things are progressing, I'm worried they'll only get worse from here. I have friends and family who love me, but I wanted to join a community who would understand why I feel like crap all the time and don't keep any social plans.

I hope there will be a place for me here. Thanks!

[Hidden]

Hi there,

Welcome to the forum! I hope that you will find it useful in term of support and advice.

I am sorry to hear that you are experiencing these symptoms. Light sensitivity is a common symptom of lupus, affecting about 60% of patients.

Have you been diagnosed by a doctor and been prescribed a treatment? If not don’t hesitate to visit your doctor so they can assess your symptoms and give you some relief.

We have an information leaflet about sun sensitivity which you might find useful and you can download or request it at lupusuk.org.uk/wp-content/u...

We have a blog article with tips on how to cope with light sensitivity lupusuk.org.uk/coping-with-... as well as a section on our website dedicated to the issue lupusuk.org.uk/eclipse/

[JanaeRadford in reply to Hidden]

Thank you, these are great resources!

I haven't been formally diagnosed (because the test alone is $1500 w/out insurance), but my GP has been willing to work with me. I've been prescribed hydroxyzine 25mg, hydrocortisone 10mg, and gabapentin 200mg. My doctor has admitted this isn't his area of expertise though.

I'm going to avoid dragging politics into this, but I'm living in the US, so, things are pretty unstable as far as healthcare right now. (And probably going to get much worse). I was kicked off my previous health insurance, and had to wait for open enrollment to regain coverage. I've signed up but I'm not covered again until January 1st (crosses fingers in hopes nothing catastrophic happens in the meantime).

After January 1st I'll be able to get blood work done and see a specialist. I'm seriously looking forward to that.

[pixiewixie]

I will certainly be thinking of you JanaeRadford. You will find a lot of struggling kindred spirits here! I certainly can understand the aspect of not keeping social plans. There are so many bright, kind, knowledgable folk here that I find my understanding of all things Lupus has improved 100%. I still have so much to absorb & understand. You will find this community very helpful. Very Best Wishes Pixiewixie

[maggielee]

Hi sorry to hear about your light sensitivity it is something I am still working out. Was curious if you had a diagnosis? I started with hiding as much as I could and with taking hydroxychloroquine have felt more confident to 'come out into the light'. I wear two shirts, scarves hat, gloves, lots of layers, hard in the summer and at work...Learned about UV and e end even tested my work environment UV to see if this laying was necessary. I am protected at work as the lights have uv covers (another story) Winter is here yah and I feel better so trying to get out more to walk in the lovely countryside. Still learning about lots about various symptoms and this forum has been great especially their support and knowledge... Even met a fellow suffer who lives nearby to compare notes and support ....so grateful for that. I recommend UV clothing, still haven't covered my car yet with UV film....its feeling unwell that's a challenge, non socialising, just keeping fit enough for work so great compassion for you, welcome to the forum. Not sure what of planet earth u live in, here it is early & nice & cloudy so getting ready for a short walk with the dogs...=-O ML

[JanaeRadford in reply to maggielee]

Thank you. The sun sensitivity was a gradual thing. About six months ago, I felt like I was getting the butterfly rash every now and then, but I would second guess myself, thinking maybe I was just getting more sun than I'd realized. Now, just this last month, my reactions seem to be so fast. I'll be in my home, with the blinds closed, and I can feel my cheeks start burning. It would be bearable if it were just the butterfly rash, I feel, but it effects EVERYTHING: my pain levels skyrocket, my fatigue increases, my joints are swollen, I have more events on my CPAP...all my symptoms are amplified.

I'm so glad you mentioned the light covers. I feel really clueless about these things. I was in the emergency room on the 15th of last month, having trouble catching my breath and fainting immediately upon sitting up or standing. (Long story short, they believe it was non diabetic ketoacidosis, but it's rare and the dr wasn't entirely positive. After charging me a fortune you'd think they'd have more definitive answers, but that was the best they could give me).

In the middle of the emergency, I asked, in between gasping for air, if these symptoms could be a complication of lupus. The ER staff immediately said, "no. " And later, when I was stable, the ER doc explained that if I'm not able to go out in the sun, I still need to get vitamin D. He then recommended--remember this is coming from a medical doctor--that I buy a sunlamp or go to a tanning salon.

Worst. Advice. Ever.

[maggielee]

When I first got the tiredness and rash a friend suggested it maybe Lyme disease, there have been a number of cases here & I know more in the States. Not sure how they determine Lyme.. You can. Check this site to see various tests...I had skin biopsy when I was covered with rash and you can see photos online of lupus skin rashes ....also check out eclipse for more advise on UV. Hope you get the right medication etc to help u out soon. ML

[JanaeRadford in reply to maggielee]

Lyme and I unfortunately already have a contentious history. Lyme is what originally started the whole being sick forever and always thing for me. I was hit really hard by the initial infection. I contracted lyme in August of 2012 and by november I was having difficulty standing and finishing complete sentences. When I was tested, the results showed positive for lyme which had crossed the blood/brain barrier, as well as the co-infections bartonella and babesia, which had triggered Hashimoto's thyroiditis.

I had just grown accustom to one underworld and now my symptoms have inexplicably changed on me. I've been seeing the same LLMD for my lyme disease, but he's started to lose hope with me because the blood work on my lyme infections show that it's in remission, and my new sun sensitivity and autoimmune reactions have come up to replace it. And this is where I'm lost. I have some insight because I've spent the last 4 years navigating the chronic lyme community, and just being sick, but these lupus-like symptoms are scaring me, especially in their progression.