Who else gets there but whipped by the sun?

[Lilrosie1]

OK so three weeks ago I was in the sun for 4 days and one walking, well we got into a fight and yes the sun won. I barely go outside, its been three weeks . my muscles go numb, I feel like I got the flu, dizzy, nausea, vomiting, cramping in legs and elbows adnominal pain and I get fever at night and when I go out and come back omg forget about it!! I feel like I got ran over by a railroad and just beat. Also my blood count is dropping again, so I'm really feeling useless to everyone

[Kathy1465]

I was diagnosed last fall and have not been in the sun since. However last week I was outside for two hours, with my back to the sun, for an event at my son's school. Since then I have a red, itchy and burning rash around my nose and in patches on my neck and face. More joint pain and fatigue as well. This stinks. I really was hopeful that while I would likely never be able to sunbathe again, I would at least be able to go outside in moderation. Do I really have to live life like a vampire!? Any advice for a lupus newbie is appreciated.

Kathy

[Lupiknits in reply to Kathy1465]

SP50 is the order from my rheumy. I always wear a hat, too. Someone here recommended sun blocking clothes which are available.

Yes, I avoid the sun, and not only because of my skin. It really makes me feel unwell after ten minutes or so.

Really sorry for both of you .....💐

[Mimi1950 in reply to Kathy1465]

Unfortunately the sun is one of the main enemies of our illness . You have to be very careful with it.

[Mimi1950]

Sorry to hear you are not well. Yes the sun always wins with our illness.

[Paul_Howard Partner LUPUS UK]

Hi Lilrosie1 ,

Unfortunately most people with lupus experience adverse reactions from sunlight and UV light exposure. It is important to take precautions and protect yourself. You can find loads of advice for doing this in our article at lupusuk.org.uk/coping-with-...

[Lilrosie1 in reply to Paul_Howard]

PauL

How are you? I have a question I've noticed a lot more weird things such as cramping in body etc, my question is do we get more ill as the lupus ages in us?

w

[Paul_Howard Partner LUPUS UK in reply to Lilrosie1]

I'm good thank you

There isn't a clear yes or no answer for this I'm afraid. Everyone who has lupus presents with different symptoms, severities and responds to treatments differently. It is therefore very difficult to give a reliable prognosis. There are some people who manage very well with minimal treatment and may experience periods of remission (where they feel relatively well) which can last from weeks to years. In other people, if it is proving difficult to keep the lupus under control, it is likely that more damage would accumulate over time and result in more complications.

There is no clear path with lupus and so it won't necessarily get worse for everyone. You just need to reduce the chances of having future complications by adhering to your treatment plan, managing any known triggers for flares, sticking to a healthy balanced diet and taking part in regular physical activity.

[Lilrosie1 in reply to Paul_Howard]

Well I hate to say but I've seen my health decrease in as little as three weeks and the heat today almost had me on the floor. And kicked my butt for the rest of the day. Idk how any one could live like this, and I'm scared to see what will become of summer, I push everyone out if my life cause its jot fair to them, so what else should I expect to come ?? I'm sorry no feeling sorry for myself, I just want to know as much as I can?

[Paul_Howard Partner LUPUS UK in reply to Lilrosie1]

Hi Lilrosie1 ,

As I was saying, there is no clear path for lupus to follow and so I couldn't say whether you may expect to develop certain symptoms or if you could start to feel better. If you are recently diagnosed and only just starting on treatment then it is likely that it will take some time before your lupus is being effectively managed.

Perhaps it would be helpful for you to speak with more people who have been living with lupus for a while? You can obviously chat with people in this forum, but we also have trained volunteer telephone contacts who have lupus and regional support group meetings. I would be happy to provide you with more information about these if you let me know what area you live in?

If you want to learn more about lupus, you can access all of our free publications at lupusuk.org.uk/publications/

[Lilrosie1 in reply to Paul_Howard]

I wad diagnosed three years back but never really had any effects of lupus until last,October till now its hard to find a good Dr around where I live been looking and the ones I've been referred to are far im hoping this month ill be able,to get to one of the best hospitals I have appt on the 19

[Paul_Howard Partner LUPUS UK in reply to Lilrosie1]

Hi Lilrosie1 , whereabouts do you live?

[Lilrosie1 in reply to Paul_Howard]

I live in victorville California, but if you guys need me ill kg there in exchange,for a,good Dr. Lol

[Paul_Howard Partner LUPUS UK in reply to Lilrosie1]

Have you contacted the Lupus Foundation of America in California to see if they can offer any recommendations of consultants who are knowledgeable about lupus? lupus.org/california

[Dan30cr]

Very true! Although I do find sunscreen and monitoring my time in the sun makes a huge difference! But if I have a forgetful day and go out with sunscreen, I soon know about it. Also find just extremes of temperature does it too... too cold and I feel like I'm seizing up and too hot I feel the life drain out of me...

Can't win either way lol

But there's always ways to cheat

[Lilrosie1 in reply to Dan30cr]

Loll it feels like im over heating and like um starting to blister the butterfly rash comes almost immediately thank god for oil of olay regenistrist sunscreen loll keeps the youth however I have been bed bond for going on four weeks currently have fever cramps flares and abdominal pain, couldn't ask for anything more lol

[englishrose67]

I know what you mean .ive recently been on a cruise around canary islands and despite putting factor 50 on I got burnt on my chest and top of forehead. Spotty itchy scaley type rash appeared and still there now. (Few weeks later) Also I now have no energy at all and ache/hurt all over.I keep getting really hot and want to sleep all the time. GP was useless when I saw him about rash so been putting Eumavate on it (using tiny amounts) as I have this for my arms when they really itch.So annoying when I didn't even sunbathe like other holiday makers on the ship.If I continue to feel like this I'll phone lupus team in case I need to increase my steroids.Hope your symptoms settle down soon lilrose

Take care xx

[Lilrosie1 in reply to englishrose67]

Ink, it just seems to be one right after the other! I can relate to that i don't use,sunscreen I just let it whip my butt! But,it makes me dizzy and kinda want,to faint. I get back up and challenge him the net day lol I lose lol im so glad though im not alone I think my boyfriend and my cousin think im crazy!!😄 well maybe a little but when you all read my next post. You might too.