Feeling deflated and exhausted, how to cope with symptoms?
Posted , 5 users are following.
Me again. I'm feeling thoroughly fed up and spent last night tossing and turning in agony because I spent a very short while in mild sun and broke out in a painful bright red rash all over the top of my jumper line, on my neck, sides of my face and my arms. I normally get a rash in the areas exposed to sun but this is agony and has not stopped burning and itching and on my arm was huge welts (just one arm?). Its not sun burn its like an allergic reaction to the sun almost. So that's swollen lymph nodes for the last decade causing huge anxiety, chronic fatigue, dry mouth, stinging and burning dry eyes (that water and burn when I go outside, and even burn and itch during the night) persistent scarred salivary glands and back to back cold sores as a result of being run down that I am not experiencing between 10-20 EVERY month. You heard right. I take manuka honey and drink milk and yet another one pops up every single day without fail. I am so worn down by what I consider to be a flare up yet I missed my consultant appointment as I was in the wrong hospital with my son's appointment and had no time to make it (my mistake). So now i'm left feeling thoroughly exhausted and deflated with no end in sight and honestly I just feel depressed with two small kids to run around after and constant cold sore outbreaks, can't enjoy the sun or anything. Can anyone offer any advice? Because I could cry.
1 like, 4 replies
maureen05275 vicki123456
Posted
Dear Vicki, I haven't any advice to offer that would be of any help but I could cry, cry, cry with you and for you. I know how hard it is to cope with multiple symptoms. I do hope someone can help. Maureen xx
Cloch47 vicki123456
Posted
Hi Vicki, I'm so sorry that you are having all these problems it must be so exhausting especially coping with 2 small children. I can only tell you what I've been told and what works for me. When I was first diagnosed the consultant told me that I must stay out of the sun......I had a rash on my arms, legs,chest and hands.....mine wasn't painful. He said that if I exposed my skin to the sun it could start a flare. I go out in the sun and go abroad on holiday but I cover up and don't sit in it. It has worked for me. Fatigue is different altogether, no telling when it's going to hit you, I try to pace myself and rest when I can but that won't be easy for you having two children. Is there anyone who can look after the children now and again so that you can rest? As for the dryness, I use biotene gel for dry mouth, eye drops during the day and eye ointment at night. Are you on medication? I take Hydroxychloroquine and it has helped enormously. I hope this helps and that things improve for you.
lily65668 vicki123456
Posted
Hi Vicki,
That must have been awful.
I'm sorry if I'm repeating something I've already said in another thread (I'm knocking on a bit and getting forgetful!) but this allergic-type rash in response to sun exposure really does sound like SLE (systemic lupus erythamatosus). It's in the same AI group as Sjogren's and the two can occur together in some individuals.
Your story reminded me of a woman I knew years ago, who'd been diagnosed with SLE and couldn't take any sun exposure whatever.
I realise this isn't going to make you feel any better, but have you investigated (or persuaded your doctor to investigate) the possibility of SLE?
Cloch47 vicki123456
Posted
I should have said that my rash is caused by cutaneous lupus. I have sjogren's and cutaneous lupus.