Sleepless Nights

I'm awake (1.50am) because of itching, it's driving me crazy; I also have a burning sensation in my knees and my arms have a very heavy/achy sensation. It's weird, as the itching doesn't happen until late at night which usually, I succesfully avoid by taking a sleeping tab or two! Tonight I was so tied up sorting what seems like every one else out, that I forgot to take them; needless to say it's too late now so wide awake itching and aching, supplementing tablets for wine (not the best I know) I get frustrated which ultimately makes my symptoms worse...sorry for the vent but I don't burden the people around me as they get upset that they can't do anything to change things... off loading on here kinda helps, it's horrible to read other posts of pain and discomfort but also a comfort that I'm not alone, the small hours are always the hardest... Thank you all for being open about where you're at, it is of great help xx

14 Replies

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  • Hi there- when I itch, it's always at night. When I'm stressed, this can be so much worse. Vent away. I truly think only people dealing with the crazy symptoms of lupus understand how frustrating and sometimes defeating lupus is. Sip that wine and get a rest.

  • Aww thank you...sorry for thedelay getting back to you...turns out it was the first signs of my worst flare yet...I'm back on my feet now trying to take it one step at a time X

  • Hi Gill (and Roho). I'm a nocturnal itcher, too. If I've overdone it, I itch; if I'm stressed, I itch; if my period is near, I itch. It comes on once I start to relax and drift off into that drowsy, pre-sleep stage. Needless to say, that soon ends and I am bolt wide awake. Like you, a sleeping tablet is the only solution. You have my every sympathy!

  • Ahhh you mentioned the dreaded time of the month!!! It was 5 days prior...I'm wondering if it was connected...I'll make a note and wait and see X

  • Hi Gill and everyone else with itchy or aching skin,

    I am allergic to both steroids and nickel. So needless to say I am very limited to what medication and creams I can use to avoid a flare up.

    However, I recently read up about being allergic to nickel and discovered that very high levels of nickel can be found in food as well as jewellery.

    Like you I have red and purple patches on my right foot, ankle and leg as well as other parts of my body and my right foot is also swollen.

    I avoid high content nickel in food and massage Dermalex Repair Cream for Excema (steroid free) into my foot and other parts of my body to avoid new flare ups. So far this has worked quite well although the cream which I have to buy is pretty pricey.

    In my opinion reading the feed-backs, I believe lupus is being used to cover a multitude of unrelated problems, especially when the doctor doesn't know how to deal with the problems in the first place.

  • Get some DoubleBase from your GP it it very moisturising and will help with the itching. Also don't use any shower gel that foams and has perfume in it. I use E45 shower then use a sponge to put on emolient oil, also by E45 before i get out. It can also be used in the bath for a soak. Also don't shower or bath in very hot water. I have had Lupus for 14 years and thisI find is the best solution. Hope this helps.

  • Sounds like a plan...thank you...it will be nice to try something that isn't a tablet X

  • I too am allergic to many things including nickel ...I wasn't aware of the food thing though * runs with a limp to Internet to check it out* :-D X ( meant for Rippon1756 but won't post is the correct place )

  • Hi Gill and everyone else with itchy or aching skin,

    I am allergic to both steroids and nickel. So needless to say I am very limited to what medication and creams I can use to avoid a flare up.

    However, I recently read up about being allergic to nickel and discovered that very high levels of nickel can be found in food as well as jewellery.

    Like you I have red and purple patches on my right foot, ankle and leg as well as other parts of my body and my right foot is also swollen.

    I avoid high content nickel in food and massage Dermalex Repair Cream for Excema (steroid free) into my foot and other parts of my body to avoid new flare ups. So far this has worked quite well although the cream which I have to buy is pretty pricey.

    In my opinion reading the feed-backs, I believe lupus is being used to cover a multitude of unrelated problems, especially when the doctor doesn't know how to deal with the problems in the first place.

  • Please see above ...my replies aren't going were I ask them to X

  • Wow! Do you know that I had never put the night itches down to Lupus and I have suffered them for years! Especially the tops of my arms, thighs and shins, I can be scratching myself for hours some nights before I drop off. And then the worst if late at night, just like last night my back starts, I usually end up having to take a knife out to scratch myself with as the missus cares to much to be able to scratch anywhere near hard enough, and they don't make a back-scratcher anywhere near sturdy enough, trust me I have tried a few over the years.

  • What meds are you on? May be worth a mention to your consultant ...between us we could come up a cure ;-)

  • Hi

    I feel normal-ish again. I have had itching for years now. I also have dogs and with every exacerbation of the Itching they end up showered, and covered in all the anti flea and mite remedies going. I think their limit was the last time and it was a charcoal based shampoo. They didn't like the smell but psychologically I felt reassured.

    It's not them though, I realise that. If I miss my certraline it gets worse as the day progresses and like everyone else I can't sleep at night. My scalp gets involved also and I cover my body and scalp in emulsifying solution just to calm it.

    Does anyone come out in a hive like rash? It must be linked. I don't have a diagnosis just a list of symptoms including blood results but I know when I feel worse such as increased fatigue and pain in muscles or joints the itch often turns up.

    As I say reading what people put on here makes you feel that your not mad. I've been scratching so much over the past few days and it so matched an increase in general symptoms. I too understand it can even stop a CFS sleeping. BUT WHY IS IT SO BAD AT NIGHT ?

  • Ha ha I so understand your frustration....everything seems worse at night but this actually is...I only get a rash when the sun gets me ( I've got pmle) but I get itchy at night regardless...you have my sympathy X

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