Going crazy: Ive started to think that i might... - LUPUS UK


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Going crazy

Lili18 profile image

Ive started to think that i might seriously be going crazy. crazy and making myself sicker than i already am. I cant sleep for the life of me. Everything seems so much worse at night. Have been taking sleeping pills every night ever since my diagnosis some two weeks ago, am scared that I’ll become addicted to them. My doctor said mild lupus with minimal symptoms and good prognosis. Whatever that means. i know i should be grateful, i know theres so many out there who have it much worse. My heart is bleeding for everyone here. But i cant stop my brain at night, panicking big time, exhausted to no end, am making everyone around me sick with worry. its a vicious circle. Can anyone help me on what to do? I cant stop my mind from thinking and anticipating the worst. Its killing me. Im killing me. Sorry for the long post. Please help me

9 Replies
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You aren’t going crazy at all. You are going through what we all go through when a diagnosis is confirmed - it’s just like a bereavement really. When I lost both parents very suddenly over a period of a few years I didn’t sleep a full night for a few years with each. My brain would play games with me and my sleep patterns. Then when I was diagnosed with RA, later changed to Sjögren’s, I experienced an almost identical pattern. It is an entirely natural response and it is entirely awful to be lying awake half or all the night. My sympathies are with you. X

Hello Lili18

It sounds like you are pretty normal then! I bet nearly everyone on this forum has had times like you describe, with broken sleep and seemingly endless worrying. It's probably worse when your diagnosis is new and at those times when one seems to be making no progress. Some things I have found helpful:

- follow the traditional 'sleep hygiene' guidelines (regular bedtime routines, soothing rituals before lights out etc)

- try to accept that sometimes you won't fall asleep easily and that's OK. Worrying about not sleeping may be as bad as the not sleeping itself.

- using certain calming thoughts or visualisations (I have a couple of hour-long 'scripts' that I mentally go through on nights when I can't sleep. One involves remembering, step-by-step, a walking holiday I once went on in the mountains, and another is a 'guided tour' of a historic building that I know and love. I immerse myself in imagining these journeys and it is calming and restful, even if I don't actually fall asleep by the end)

- I have practised shutting down especially troubling thoughts and worries. After midnight - which is when the worst anxieties seem to arrive - as soon as I hear one of the 'bad thoughts' arriving, I tell it that I won't be paying any attention, as it's too late fo0r that nonsense. it doesn't stop that thought drifting in again, but it reminds me not to put any energy into listening to it. Instead, it's a cue to switch focus onto one of my calming meditation scripts or calm breathing or whatever.

You may well find that the longer you have lived with the diagnosis without any of your fears coming to pass, that the intrusive worries gradually fade. Reminding yourself that these terrible things did *not* happen might help remind you that anxiety thoughts are often not worth paying attention to. x

Hi there! Sleeplessness is a terrible thing and a natural response to a huge life event XOX. Remember stress is Enemy No.1, for it feeds lupus.

Those are expert tips from healthunlocked.com/user/whi... on gaining control of sleep again. Your thoughts on sleeping pills are real, so ask your GP about something else to help you through, just to break the vicious circle.

Once you're getting some sleep again, you'll be able to do more to help you sleep!

Keep us posted, you're not alone! mo xxx

Hi! I felt compelled to respond to your post as you are in the same position I was exactly a year ago. I was diagnosed with lupus last August and as Twitchy mentioned, it is a bereavement process. Let yourself feel those emotions but only for so long because stress does make you sick. You will never get an answer to 'why me?'. Unfortunately bad things happen to good people. I had my wakeup call when I made myself so physically ill from stress, I developed acute colitis. A very nice nurse at the time shared with me how he had a chronic illness and understood what I was going through. He also told me we can't worry about what might happen, because chances are they may never happen. Just yesterday I went for a long walk and was thinking about how far I have come over the past year, I appreciate life and my family so much, I am taking better care of myself. It is important to focus on the positives. You will get to this point.

InezJ profile image
InezJ in reply to sflynn84

Hi😊your post was very encouraging for me. I was just diagnosed last June..you spoke very well and eloquently. I appreciate such positive reinforcements .

Hi guys

Thank you so much for all your replies. As every time, you are a huge help

I know it’s hard but try not to make urself sick with worry like this. Try to think that u will just deal with things as they come and that u can’t change anything about it all at the moment.

I always try to think it could be much worse and to just try to be positive and deal with things as they arise.

Try some relaxation music at bedtime or a hot relaxing bath or massage.

Worrying is only going to make things worse do try to avoid it, I know it’s very hard and we will all have had to go thru it and at least u have us all here to help u thru it. Try and rest and look after yourself x

Hello Lilli18,

I have experienced extreme sleep difficulties for approx 18 months. It took me a while to realise I had a sleep problem. I thought I was just going through a phrase.

I can totally relate to the over thinking. I often would lay in bed and send myself into such a panic that it felt like I was sinking into my bed, almost like I was passing away. This just created an even bigger problem, too scared to go to bed altogether.

I was taught that for over thinking and anxiety, write your worry’s down on paper and give yourself 10 minutes every day to allow yourself negative thoughts and once that time has passed you leave those negative thoughts there.

I now take amitriptyline at least 2 hours before bed, by the time I get into bed I fall fast asleep. I am managing 6 hours most nights , before I was getting 2/3 hours. These help with night time pain also.

Unfortunately once we form a habit, bed = panic, anxiety, worry it is hard to break.

Maybe you could try just falling asleep on the sofa watching tv for a short period to try and break this habit. Alternatively when you go to sleep listen to something audio, I generally find a form of talking is easier than music as I just sing along and keep myself awake 😂

I hope your worry in time will improve


You are normal I had days where I literally would stay up for two days in a row and often times a full day. Everything is new and overwhelming. Keep good communication with your doctors and find a good support system. To help me sleep at night I started exercising on my bike just before bedtime, at a very low pace for 40 min then take a shower and put on relaxing music with an eye cover. Sleep is very important because when your tired it can cause flares for some. Be patient even though it’s hard and I’m so sorry you are going through this...and you have all these wonderful people here to encourage you for the best.s

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