Im overwhelmed at the chronic insomnia that accompanies this vile disease,the more i flare the worst the insomnia becomes ,ringing in my ears ,racing brain ,body feels like its on a boat as i lie there ,my body is so exhausted i wander if something else is causing the chronic sleep deprivation?why cant i sleep the disease away??i feel like im loosing my mind ,my doctor told me to relax ahhhhhhhhh! its out of my control ,its like my system is a complete different part of my body and has a brain of its own ,any advice guys would be great ,thankyou .

10 Replies

  • sleeping tablets??

  • Doc would only give me 3 days worth lol;)

  • Unfortunately there are many of us with lupus/sjogrens who have the sleep disturbance and this only seems to add insult to injury when we constantly feel so exhausted. I'm sure other people will comment with various suggestions for sleeping tablets for you - at the moment I choose not to medicate but my GP has suggested I try melatonin (?) based tablets to see if that will help. I know other people use amitryptaline for example. Conventional sleeping tablets are unlikely to really help you as the insomnia is an underlying part of the condition. One other tip I can give you as I also suffer with tinnitus which always seems particularly bad when you can't sleep, I now use a sound machine which plays monotonous sounds such as birdsong, crickets chirupping, rain, waves etc . . . I do find this sometimes helps soothe the brain activity down a bit during the night. I'm sure you've already tried the usual suggestions for helping you sleep - room not too hot, lavender drops on the pillow, relaxing bath before bed, camomile tea etc etc etc (I've also tried all of those and none really help - I think that's more for people who have trouble getting to sleep rather than staying asleep). Anyway, you're not alone in having these sleep issues - hopefully some other people will have some useful suggestions for you.

  • Thankyou lucy locket,in australia i had my saliva tests for meletonin done,i was off the chart and they suggested supplementing 3-5mg at night ,i tried to get some but health food shops dont sell it;( maybe doc can pescribe it?you hit the nail on the head with the brain activity,mine is so wired yet im so exhausted and suffering ,why wont it turn off?;(((

  • I don't know how old you are Brave but in the UK GPs are not supposed to prescribe melatonin for the under-55s. (I'm not there yet - quite! - but my GP was prepared to prescribe it off-licence for me.) I would discuss it with your doctor if you think it could help you:

    "Melatonin is a naturally occurring hormone produced by the brain. It is involved in regulating a person's body clock and helping to regulate sleep patterns.

    Just 1 melatonin product, called Circadin, is licensed for use in the UK. It can only be obtained with a prescription and comes in the form of a 'prolonged-release' tablet. Prolonged-release means that the drug treatment continues working over a number of hours as the active ingredient is released slowly in the body. This tablet is licensed for treating sleep disorders over a short period of time in adults who are aged 55 or over. It is not licensed for use in any other age group, and so using prolonged-release melatonin in children and young people under 18 is described as 'off-label'.

    Other melatonin products, some in the form of 'immediate-release' capsules, tablets or liquids, are available from specialist suppliers and on the internet. These are not licensed for use in any patient group in the UK and so are known as 'unlicensed'." taken from the NICE website

  • thankyou for this

  • Histamine is a chemical that is produced in large amounts in reaction to the immune system being triggered. It would set you on edge and make sleep impossible. The gut makes large amounts of histamine in response to foods that it has selected as problem substances. The blood brain barrier can also be damaged by chemicals that our own immune system produces. Food which has not been fully digested can trigger these responses if these particles get through a "leaky gut" and the brain can be affected by them or by the body's immune response. In the short term you could try Piriton (generic name chlorphenamine) available at any chemist's. In the past I have taken 4 at night to some good effect. I don't know whether you eat any of the things I have found to be problematic - wheat, potatoes , legumes. I found that food combining (especially not eating proteins with starches) gave me back good sleep after 10 years of sleeping 4 hours or less. I wish you well and hope you find your answers.

  • fantastic thankyou ;)

  • hi, have tried or heard of 5HTP, its a natural remedy to help sleep it ups your serotonin and tryptophan in your brain to aid a good nights sleep my son swears by it he suffers with chronic fatigue and terrible insomnia ,but this has helped no end his doc recommended it and you can buy it from holland and barratt. i suffer with lupus sjogrens fibro etc, but i need to sleep for 10 hours at least a night and cant wake up in the morning and never feel refreshed even after this amount of sleep ! hope this helps x

  • Thankyou

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