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How I wish I could sleep the nights are getting longer and longer I am so tired but never get anymore than 2 hours sleep, I don't sleep during the day and the meds don't seem to keep the pain away at night. All the gp says is I wish I could help but I don't know where to go from here. I am burning up, head, back arms and legs hurt all I want is sleep ostensibly that too much to ask. Its 3am now and tonight so far I have had 1 hours sleep. Tried relaxation, hot bath even alcohol some nights but nothing seems to work I feel I am going mad and need help

6 Replies

I don't need help to go mad cause I am mad :-)


Maybe if you try a pain management clinic for the pain, you will then be able to relax and sleep? Just a thought.


Hi luupysue, I went to write your name and my predictive text changed it to lumpy sue which seemed appropriate lol. Anyway back to the point I have had nights like this where everything hurts and nothing works but I thought I would send some of the things I do for you to try.

First I usually have a radio on so that if I wake up I have something to listen too as it helps distract me a little from the pain

Secondly I usually sprinkle some aromatherapy oils on my pillow I use bergamot and clary sage they are uplifting and help with depression again helps invoke the sense of smell another distraction for the senses

Thirdly if I get hot I put talc on it helps cool me down a little and stops me thinking about how uncomfortable I am. Johnsons do a talc for babies that has lavender and camomile in that's very cooling on the skin

Sorry not big tips but hope some of them help xx


Ifeel your pain ,i do i do i do ;((((i was given three nights slepping pills last week ,i havent slept well in years and now its proper insomnia,i started taking valerian last few nights,i think it helps?


How awful for you luupysue. I've got night fevers at the moment, but at least I can sleep through the worst of it. It must be awful for you to have to survive on so little sleep.

Do you have a rheumatology advice line that you can call? I would be doing the same, but I've got an appointment very soon. This is a sign of increased lupus activity, so you may need an adjustment of your meds to get it under control.

Very best wishes. X


Thank you for all advice i will give them all ago maybe all at once who knows I might finally sleep. I managed to get an appointment with my gp I took along a diary and she was horrified at what I put up with, she kept saying she wishes she knew more about sle and is going to try and speak to the rhmy asap, she said she can't let me wait till July for my appointment as I need specialist help and advice. She tried sleeping pills a while ago as well as anti dependants and I got 1 nights sleep out of 5, the tablets sent me even more lupie ha ha so we shall see what the next couple days bring. :-) chin up and all that xx


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