I’m writing this in a fog of exhaustion after so many sleepless nights! It got me wondering if insomnia is a Lupus symptom and if so why? I’m keen to find out what I can do about it too!
Lupus and insomnia!
There are many different ways insomnia presents its self and many different reasons for it! Insomnia and fatigue is a symptom of Lupus for many and in itself can exacerbate symptoms, on the flip side, symptoms can exacerbate insomnia issues! This is a chicken and egg situation!
So this is a bit about my sleep issues. The first time I met with my rheumatologist I was literally on my knees exhausted! I cried to my GP, who pointed out that since I was taking amitryptiline that should be enough to knock me out! The rheumatologist noted my insomnia which I put down to being in pain however I also noticed I might not be in pain at all and still wide awake, all night! I was literally existing on two to three hours sleep a night and not a block of sleep an hour here and there was my pattern!
My mental health was declining and my tolerance to pain was shot! I felt weak, miserable, and hopeless! My rheumy addressed my pain with strong painkillers to be used as and when but not too often as they are addictive! He started me on Hydrocychlorinique and I was signed off work for 3 months as it takes time for Hydroxy to work. My shocking sleep pattern persisted but I could nap in the afternoon which helped, I tried to keep my naps fairly short so I had a chance of sleeping at night. All of a sudden I found I was able to sleep better and I was feeling better, it seemed they hydroxy was kicking in and I went back to work.
I was sleeping better most nights but some nights I was simply in so much pain I needed all my pain meds to get to sleep… I then discovered Dr. Goldner and Goodbye autoimmune and looked into my diet… sugar is now a big no-no if I don’t want to be up writhing around with muscle pain! See this post for more on this.
With better sleep came better mental health and mental clarity and my symptoms had improved. I saw my rheumy again and reported the changes and improvements, I was still needing pain killers but a lot less it was very encouraging. He suggested at a subsequent appointment that we could try reducing the Hydroxy from 2 per day to 1 and 2 alternate days. I duly did this and saw some of my symptoms return but not too bad then all of a sudden I was back to very little sleep, horrible flare-ups, anxiety, etc … I put the dose back up then after another 6 months we tried again with the same result so its back up and we are in no hurry to lower it!
I can clearly see that diet and meds are the way forward for me to stay on an even keel! If you are suffering from insomnia please know I understand the true full spectrum fall out from lack of consistent quality sleep! The effects are immense and lets not forget it was used as a form of torture back in the day! It breaks you down on every level!
Can Lupus Cause Sleep Problems?
Yes definitely, according to everything I have read and my rheumy! It can be caused by pain but also just an inability to switch off and power down. Some medications can also contribute but some will cause fatigue but the fatigue won’t translate into sleep!
Fatigue is overwhelming and even if you did get a good night’s sleep chances are you will still be exhausted … who remembers when a good night’s sleep reset you for the day like a ‘normal’ person?
It’s almost as if our bodies have gone into hyper mode and we just can’t switch off and rest! Maybe its the stress of having a chronic illness, ‘will I be able to cope at work?’ ‘how can I do better for my family?’ etc… maybe its the inflammation in our bodies? It seems it’s hard to say but it’s definitely a common thread for us Lupies!
Tips for treating insomnia.
There are loads of tips for treating insomnia and they are worth trying for sure …
I have tried herb tea, CBT oil, no screens for two hours before bed, medications, meditation, yoga, sleep apps, no caffeine, alcohol, no alcohol, so many things … here’s what I have found.
Pushing myself to stick to ‘proper’ sleep times doesn’t work so I go to bed when I am truly exhausted and get up when I wake up … I work for myself now and I don’t usually HAVE to get up so if I do need to I set an alarm but in general, I am pretty relaxed about it now. When I was working out of the home this wasn’t an option. It has it’s downsides as if you aren’t in sync with everyone else it can be isolating but I often am now able to follow a more usual pattern.
I am careful with screens in the evening but I still use them, sometimes they help me relax and unwind if I am stressing about going to sleep but I wear blue light glasses to stop the screens keeping me awake!
I try to do at least one thing in the day which reminds me of who I am … for example some art, a makeup look, play my guitar, any hobby or interest which will help me feel like me! It depends on my Lupus what I can do I love running but obviously there are times that’s not available to me, knitting is sometimes too hard on my fingers … you get the picture! But I do have a little stash of different projects I can do at different stages of my Lupus.
I try to do a little exercise each day, sometimes weights or running, sometimes yoga or a gentle walk sometimes I combine it with another activity like cleaning a room… I just do something every day that I can look at and say ‘yes! I achieved this!’ no matter how small.
I avoid sugar … if I give into sugar I KNOW I’m not sleeping so it would need to be worth it!
I count my spoons and try very hard not to overdo it as this will cause me to be in pain and unable to sleep. Read about the spoons method here.
I keep a worry journal by my bed and note down any worries.
I stay connected to people so I don’t feel isolated.
I take my meds and work with my Doctor.
I eat a very healthy, vegan clean diet most of the time.
Our doctors and experts can only help us so much… WE are our own experts, we can observe ourselves and find some of our triggers. We can see what affects us negatively and work to change it.
We and only we can truly make the best of our time, we have Lupus but let’s not let Lupus have us! Working with your doctor and doing your own research and trying your own self help things will go some way to helping you take back some control.
I know I won’t sleep well every night and I can tell when it’s coming and it fills me with dread but I am learning to accept it and wait for the good days to come whilst doing my best to minimize the bad days and nights! I used to use a lot of energy getting angry and frustrated … I do that less now and roll with it a bit more. Not adding that emotion means I am giving myself less stress, less stress means fewer flare-ups.
And sometimes no matter what I do, I lose it, I get sick, I can’t break the flare, I’m mentally and physically drained and there seems to be nothing I can do but wait it out knowing its not my fault and it will pass and I’ll do a little something to help me feel better in myself.
I hope you find your way through this, I hope you get a good sleep and feel well, but if not keep fighting Lupus Warrior xx