View Full Version : In pain, disgusting and depressed.

03-27-2012, 05:04 PM
I had an amazing weekend in the riverland. However, a 'quick trip in the tinny' turned into 6 hours on the river with no sunscreen. And now I'm paying for it.

I have blisters on my nose. My bottom lip is full of coldsores. They are now spreading to my top lip and perhaps my nose so it hurts just to speak. The inside of my mouth is swollen and I have ulcers. My gums are swollen and sore. My tongue is fat. It feels like my teeth are about to fall out. My jaw aches. I eyes are sticky and swollen and sore. I have had a headache since Monday. My shoulder, elbow and hands hurt. Something has been and zapped the life out of me, I am so fatigued I want to cry when I move. The glands in my neck are swollen. The glands in my groin are swollen so much it is uncomfortable to sit or walk. My feet hurt. I'm also due on my period...well I'm not...but it would appear that I'm going to be about 2 weeks early (thanks plaquenil.)

I have missed the last 3 days at work and I think I'll be missing today too. Not that I can afford too. I'm trying to support myself and my partner on a shitty part time wage. I think she's become so demoralised by unsuccesful job searches that she's stopped even looking. She's doing some housekeeping at the hostel today to earn us a few nights accomodation which is a massive help. I can't go to work...it's my job to be bright and bubby and chatty, but my lips start to bleed if I even attempt a smile.

I'm sorry to moan. I know there are people suffering with much worse. It doesn't help that i have a pre-disposition to becoming depressed. Thankyou Bipolar Disorder. So down right now and feeling lost.

03-28-2012, 11:03 AM
Oh My Gosh; You've suffered a serious allergic reaction to the sun. I am so sorry that you are going through all of this. We must avoid the sun as much as possible (as well as fluorescent lighting) because our disease causes us to have just the type or reactions that you are suffering from now.
Do you have any medical coverage? Are you taking any prescribed medications for your lupus?
I ask these questions because there are some medications that can help to speed up the healing process from this flare. Also, some of your current medications may be increased for a period of time to get you through this flare. In any case, I think that you should try to see a doctor to get some help for all of these symptoms that you are suffering from.
The exacerbated fatigue is also a symptom of the sun exposure and the flare up. There is not much that you can do about the fatigue without treating the underlying cause.
I do hope that you feel better very soon...wishing you the best.

Peace and Blessings

Marine wife
03-28-2012, 11:39 AM
Lord have mercy! I hope you start to get some relief soon.

03-28-2012, 01:20 PM
I'm sorry you're feeling so bad.. I hope you get relief soon

running girl
03-28-2012, 05:44 PM
I'm sorry you are having a rough time. Please take care of yourself.


03-28-2012, 06:20 PM
I am so sorry that you are going through this! I live in Texas in the US and our summers are endless and long ago I lived in the water. Now, I wear long pants, long sleeve shirts, sunscreen and hats just to go outside. The last time I tried to go to the water park (even in this get up) I was sick for 2 weeks AND a smart a** teen asked me why I would wear all of that to the water park LOL.

When this heals I would suggest always keeping sunscreen in your purse. I keep 1 for my face that is 100 and one for my body at 75. I also keep a hat for wherever I go. I know this doesn't help you now but maybe on future visits.

I agree with Susie though... please see a doctor as soon as you can

03-29-2012, 04:10 AM
Thank you so much for your responses guys. I've been feeling so low and it's so nice to have well wishes from people who truly understand.

I have taken your advice and called my rheumy and suprisingly he can fit me in tomorrow! I'm just taking plaquenil at the minute, only started taking it about 4 weeks ago. I think this is one of the worst flares/reactions I've had. I was hoping I could fight it myself but think I have to admit I'm not winning this one. I'm using cream for the cold sores as well as Lyp-Sine...a therapeutic dose of supplements to help relieve cold sores and prevent future ones. New to me, but I think it is reducing the pain.

I got very upset the other day because a friend sat me down and said "I know you don't want to hear this, but in the last 2 months I've seen you go from someone who is a little ill, to someone who is really very ill indeed." Sucks to hear it from someone else.

Anyway, the job issue is solved. I have told my boss I won'y be going back until further notice, and we have moved to be with friends. My partner has secured her old job back packing fruit, and once I am back on my feet I can start there too if I feel I can manage it.

I will let you know what happens at my appointment tomorrow xx

Ps: Kids...wear sunscreen! I've got a bit lax now the temperature has dropped, but this has been a reminder that the UV is still as strong. Thankyou all again so much xx

03-29-2012, 04:54 AM
Hi Shine,

Don't beat yourself up over this. I have made the exact same mistake, not once, but twice.

I think everyone with Lupus makes the no sunscreen mistake sooner or later. My symptoms after
unprotected UV exposure are almost identical to yours. It's like having the flu times ten.

Go easy on yourself, and good luck with your appointment tomorrow.


03-29-2012, 11:15 AM
I hope that you will be feeling better soon.
I would think that you should tell your rheumy that friends can see that you are visibly getting worse.
He might need to make some changes in your meds.
Get better soon - and stock up on sun screen.

03-29-2012, 10:01 PM
So I've been to the rheumy and had my sunscreen and hat lecture :embarrassed:

He's prescribed me 7.5mg of prednisone to take. I had a short course of the same stuff but a much higher dosage a while back and I was pleased with the results, but suffered horrible bloating...so hopefully this lower dose will suit me well. He said to contact him in a couple of weeks if I see no improvement and we'll discuss increasing the dose. I'm also to increase my plaquenil to 200mg as we'd already discussed. Next appointment in 5 weeks. Hopefully the prednisone will reduce the breathing pain I get too like it did last time.

I'm going to make suncream part of my daily routine now. I'm an outdoorsy person so I really should. I often catch the sun while driving too and it's silly really. If solid exposure on just one day can do what it did to me then who knows what kind of cumulative lower level effects it's having day-to-day.

(The cold sore treatment is working wonderfully by the way, for anyone who suffers. Lyp-Sine supplements...I've never had cold sores heal quite so well and so quickly. And the Blistex cold sore treatment cream I find is far better than Zovirax...silly because they both contain the same amount of active ingredient, but the base cream is thicker and it's a bigger tube too!)

Thankyou for your understanding and advice. If anything today I really enjoyed the 45 minute drive to the doctors through the beautiful riverland...rows and rows of vines and orange trees :)