fed up!!!!!!!!!!!!!!!!!

I'M SO FED UP AFTER WEEK'S OF BLISTER'S IN MY MOUTH &NOSE &TOUNGE I'V KNOW GOT MAGER SWEAT'S BED COVER'S ARE OFF AND NOT EVEN PUT THE HEATING ON MY POOR HUSBOND NEVER COMPLAIN'S AS I GENERATE THAT MUCH HEAT.....JOINTS ARE HURTING LIKE NEVER BEFORE !!!!!!!AND MY HEAD WONT STOP BANNGING FEEL SO WORN OUT IT IS TAKEING AT LEAST 3HRS TO GET GOING IN THE MORNING JUST SO WORN OUT MY FEET ARE BLUE AND MY HANDS ARE ON FIRE????NOT TO GOOD AT THE MO HOPE MY FELLOW LUPIES OR DOING FINE HUGS TO YOU ALL

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  • am so sorry to hear this and I empathise completely as mouth, nose, ears and any other moist tissue blisters is something i suffer from frequently. Have you ever been tested for coeliacs disease (gluten intolerance) ? as that was/is the cause for my outbreaks

  • hi manier.....thankyou for your reply no i havn't been tested for coelics diesase but i'm going to try and go to my gp in the morning as i'm realy getting me down...hope i do get to the bottom of this out break take care xx

  • You poor thing! You are in the wars aren't you?! You musnt lose hope, I sleep with a fan on, for the night sweats, even when I feel cold I am sweating, drives you crazy doesn't it? I am used to it now though, you will find your own way of coping, as for the head aches, I find lying down in a dark room for an hour does the trick, I feel like a vampire sometimes! Ha ha, I am happiest out of the sunlight and in the dark! Never thought lupus would affect me, so I have learnt to deal with one thing at a time, and so must you, if you are tired rest, if your joints hurt, find a way to relieve the pain, I find rubbing almond oil works a treat, you must learn to work around the illness, we all have to, I promise it will get better sweety, chin up. One day at a time. X

  • Sorry you feel so rough. Having a bit of a rough patch myself but not as bad as you.

    Hope you feel much better soon.

    Sue x

  • So sad to hear you are having a bad time, we all get them and know only too well what your going through. In time it will pass and hopefully you will be on a high, well as high as you can get with Lupus. If only people could see the pain and suffering us Lupies go through perhaps scientist would then do more to find a cure. Mouth ulcers, and ears,the sweats yuk,etc I've got at the moment, not nice at all.

    Best wishes to you my friend,As Pammy says " one day at a time ", Get well soon Trish x

  • i'm really sorry to hear your feeling so rotten and I hope this pass's soon and you will be feeling better and in much less pain.

    Take care, Mandy x

  • Sweats driving me crazy not a nights sleep 4 a long time ,they dont give in either during the day and can be very embarrising,also been taKING HYDROXCHOROQUINE now 4 2weeks and i am suffering the very bad diarrehea,is this normal,Thank you

  • Ok Hi all of you, and it is Celiac disease which is a gluton intolerance and you can you Malox to rinse your mouth which will help. It is more likely Herpes zoster 1 which is very common in Lupus patients and it is from your immune system being in a poor state. We are finding that 50=100,000. units of vitamin D, will help with all these things. You would need to take at least 50000 units a week minimum, The Hydrochoroquine in quainine, it is given to malaria patients for aches in an outbreak which is common in Lupus patients for treatment. Hope you feel better! Signed a girl in the US with Lupus!!!

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