any advice please: Hi everyone can anyone advise is... - LUPUS UK

LUPUS UK

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any advice please

rlupus profile image
17 Replies

Hi everyone can anyone advise is there anything that can help with sleeping i am really struggling i am awake most off the night and i am constantly tired with no energy its driving me mad, I have Lupus, APS, Asthma, Chronic obstructive airways disease, and on lots of medication my GP is very reluctant to give me sleeping pills because off the Asthma, and chronic airways disease.

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rlupus profile image
rlupus
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17 Replies
Suzie profile image
Suzie

Hi, do you use your computer or phone in the evening? If you do, stop after dusk. The light from the screen tricks your brain, stopping you from sleeping. Also make sure you spend time out side at different times of the day, especially at dusk. During the day different colour light helps our body to set its internal clock. Regular exercise also helps. What do you do for relaxation? Walking in the forest is apparently the most relaxing thing we can do, of course if you live in a City that may not be possible. Tai Chi, yoga, they may help.

None of these ideas are a quick fix, give it time to reset your body clock. It sounds almost like you are perminantly jet lagged, without the nice holiday. Good luck.

rlupus profile image
rlupus in reply to Suzie

Thanks for your reply your right it does seem like i am jet lagged all the time without the holiday, Its very hard for me to exercise because of my breathing i am on nebulisers 4 times away and home oxygen.

misty14 profile image
misty14

Hi rlupus

There is nothing worse than not being able to sleep!. Could it be one of your drugs like steroids causing this?. The Body Shop do a pillow spray that aids sleep. Hope it improves for youX

rlupus profile image
rlupus in reply to misty14

Thanks I will have aloof for it i did pay £30 for a luxury pillow from M&S worked for 2 nights and that was it.

foxglove profile image
foxglove

I use Bach Night Rescue spray and a lip balm called Moon Balm - Manufacture HURRAH!! and find this helps. Think it is the combination of the two that does the trick. Hope you find something, not sleeping is exhausting. Good luck

rlupus profile image
rlupus in reply to foxglove

Thanks foxglove will look into it.

foxglove profile image
foxglove

The name of the HURRAH!! manufacturer is mypure - Google mypure/ moon balm and you will get the info!

rlupus profile image
rlupus in reply to foxglove

Thanks will do

loretta1106 profile image
loretta1106

It's horrible not to be able to sleep and doesn't help with brain fog. I've discovered a few things that have helped me. If I'm laying round too much before bedtime I have problems sleeping. If I'm active and take a late walk that has helped. I just started tai chi and a stretch & meditation class & go to the gym. I'm 68 and have aps and undifferentiated mixed tissue disease & had a stroke a yr ago. I do what I can and try to keep active. As a last resort, I have coffee Cruda which is a natural herbal product and Simply Sleep which is made by Tylenol and is simply benadryl w no Tylenol. Good luck to you. Be well.

diane1428 profile image
diane1428

All my life I have been a non sleeper which has at times drove me nuts. Since being diagnosed with Lupus and APS I have been on pregablin. When first given this i was terrified of it as I was told it was addictive and eventually you would require morphine for pain. Because of this I only took half the dose and left it to late at night and took it with my warfarin. It seems to have worked for me. I sleep now like a log.

I dont like taking tablets of any form but had to give in eventually because of the pain and I know it when I forget to take it. Its been a bit of a learning curve for me as I now dont plan the days weeks, and even months in advance through the night.

I also take a bath late at night just before taking the pregablin. Just give it a try if you take pregablin of course. It may well work.

Good Luck if not its back to counting sheep.

Cann profile image
Cann

Have you tried meditation? That is one thing I use. I have many strategies for the odd sleepless night because generally I sleep well now.

I find having a banana about half an hour before bed helps me, but we are all different.

Drugs and surgery started my insomnia, but thankfully don't take them now - use homeopathy - homeopathic Opium helped me to get my sleep pattern back.

I exercise little and often just as I eat the same way and I don't use the computer or watch TV before bedtime - I am electro-sensitive anyway, so need to keep the use of both to limits.

I use the D'Silva method of meditation sometimes where I count back from 10 in 2's and with each 2, I state the affirmation 'going deeper' and by the time I am at 1, I am usually asleep - if I'm not, I repeat it until I go off.

Always think of good things before sleep or positive things in your life if you can't sleep and say to yourself 'I trust my body to take care of me'.

Negative thoughts can hinder the process of sleep and shut out any problems in your life saying 'tomorrow is another day - a fresh start - it will all work out all right'

Getting outside in the fresh air is important, too, but away from traffic fumes or pollution - parks, beaches, woods where the plants absorb the pollutants.

You say you have asthma - do you have a lot of dairy food - it may not be the same for you, but I was diagnosed with asthma and on steroids for six years until a naturopath told me to give up dairy and my asthma would go.

I did and it did.

Dairy is a mucus forming food and for some of us, the body just can't deal with it - I put it down to being put on formula milk too early and not being breast fed, but that is me and may not be so for you - just another consideration, though.

Health is a mystery and listening to the body is important - learning how to listen to the body is even more important.

Hope these may help and good luck.

MrsNewfy profile image
MrsNewfy

Neal's Yard Remedies do several lovely aromatherapy products which are designed to help you sleep & I find they help: Aromatherapy Blend Night which you can either use in a diffuser in your bedroom or dot on your pillow; Aromatherapy Remedies to Roll Night time to roll on your pulse points at bedtime; Beauty Sleep face lotion which contains aromatherapy oils to aid restful sleep; there is also now a Beauty Sleep Body Butter & Body Lotion with similar properties; last but not least is the Night Tea which I find particularly effective. You can purchase online at uk.nyrorganic.com/shop/lesl...

aloehealth profile image
aloehealth

For my aunts Lupus she takes Aloe Vera Berry Nectar...this has really had a fantastic effect on her fatigue, sleeping and asthma...I would highly recommend it!

Fighting profile image
Fighting

WIth different medical issues, I had similar sleep problems for the better part of a year. I tend to be a rather uptight, go/go kind of person so relaxation, wind down time is important. A warm bath 90 minutes before bedtime did not help; deep breathing, progressive relaxation exercises did not help. I had to wait until a cracked rib healed and I felt more at home in my house. Feeling cold is one problem I struggle with most of the time, feet hands, nose. What I do now is not conventional but it works. I have a large queen size pillow, and put a smaller soft pillow on top of it. I put this inside a sleeping bag which keeps in the body heat better than sheets and blankets. For years I have used an herb medication which works better than any of the usual sleeping medications. It's called "Calms Forte". I only use it occasionally at present. Doctors have their pharmaceutical arsenal. I like what works. My best, Rlupus

Cynwic profile image
Cynwic

Ask your doctor if you can have lemon balm tea. You can add honey to the tea. Also another option is bone broth. I can send you the link how to make it. Both of these remedies will help you sleep the whole night. Before trying any natural remedies always check with your doctor and pharmacist.

Whathappned profile image
Whathappned

Hi

Having COPD and asthma mean they will have to be careful, especially if you are on oxygen. They won't want to give you anything that could reduce your respirations and oxygen intake. So it must make it difficult for you especially if you are limited due to breathlessness when doing activity.

I think you have been given a lot of good ideas such as meditation and relaxation as well as a not using things such computers at night. (I really should take that advice). One thing I have started doing is wearing a face mask. For some reason the pressure on my eyelids keeps my eyes closed and helps me relax more. It especially helps if I'm tired but the brain doesn't want to sleep. I have no idea why though. It's worth giving it a go!

rlupus profile image
rlupus

Thanks for all your replys i will look into a lot of these , yet again last night got into bed a reckon i am lucky if i have had an hours sleep and feel awful now . i will try and get some rest later . i have tried a few thing all ready mentioned but so far no use. i asked my GP this morning for sleeping pills but he has refused as my asthma is bad at the moment and also have a chest infection . it just seems one thing after another.

once again thanks for all the advice xx

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