Seeking a Good Night’s Sleep With an Autoimmune Disease
It’s often true that we never really know how much we treasure something until we no longer have it. We can also tend to take things for granted in life by never truly appreciating what we have until it’s taken from us.
I found this to be true of sleep when our 16-year-old daughter Grace started showing signs of what we now know to be Lambert-Eaton myasthenic syndrome (LEMS).
For most of my life, I never had trouble sleeping. Usually, I was out shortly after my head hit the pillow, and I didn’t stir until morning. But worrying about our daughter’s deteriorating health stole hours upon hours of my rest.
Never before had I recognized the sweet gift of sleep and begged for more.
Although I struggled for a while, I eventually got through it, and my sleep patterns mostly went back to normal. However, now that I’m part of the LEMS community, I’ve realized that lack of sleep is common among people with autoimmune diseases, especially those with LEMS.
Many parents might complain about their teenagers snoozing the day away, but I would welcome that for Grace. Looking back, we realize that her inability to sleep was probably an early warning sign of the autoimmune issues that would soon surface.
On average, Grace gets between five and seven hours of sleep a night. If she has a really good night, she might get eight hours, but that is rare.
To cultivate a comfortable sleep setting, we have eliminated all ambient light. Grace has used sound machines for background noise, and we ensure the air conditioning is at a cool — but not too cool — temperature. She attempts to stay away from computer and phone screens prior to bedtime. She has listened to gentle music and books on tape. Reading before bed helps a little, but nothing seems to make a significant difference in her sleep pattern.
We have tried every trick in the book when it comes to sleep aids, with the exception of medicinal options. Herbal tea definitely helps, but Grace can’t get past the taste.
When Grace was given an Apple Watch, we thought it would be great for tracking her sleep. There are so many apps out there that can do this. However, it was distressing to see just how interrupted her sleep really was.
I know the world of autoimmune diseases is constantly changing. I hope that one day we can find solutions for those suffering from sleep deprivation and give them some much-needed rest. I, for one, will never again take for granted sleep that comes with ease.
How do you get a good night’s rest while living with LEMS? Please share in the comments below.
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Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.
About the Author
Comments
Mark Stanton
Hi,
I do not know anyone personally who has LEMS; however, an acquaintance works closely with LEMS patients in Australia, and I have come to know the difficulties and challenges faced by patients.
I was really interested in the recent posts about getting a good night's sleep with an autoimmune disease, and I thought I would share details of a documentary by Dr Michael Mosley that was recently televised in Australia. Dr Mosley investigated some solutions for getting a good night sleep that included a rough experiment, on himself, where he found taking a prebiotic just before bed for 5 consecutive nights helped him get a better night's sleep. Following is a link to the BBC documentary; however, it no longer appears to be available: https://www.bbc.co.uk/programmes/b08q8p13. Perhaps you could reach out to the BBC if you are interested.
There is some further information at the SBS website where the documentary was televised in Australia: https://www.sbs.com.au/food/article/2020/03/13/science-suggests-prebiotic-foods-might-help-you-sleep.
I believe Dr Mosley took a proprietary prebiotic product. However, naturally occurring prebiotics, such as lentils or chickpeas, or chickpeas prepared as hommous, may be helpful but not pack the same punch as a branded product.
It seems this experiment was born out of recent preclinical research at the University of Colorado: https://www.colorado.edu/today/2020/03/03/better-sleep-prebiotics-could-help. The influence the gut has on mental health and the immune system and associated diseases is a relatively new but exciting and growing area of science and medicine.
I hope the information in this post is helpful to your readers.
Kind regards,
Mark
Sydney, Australia
Alan Stone
I am a LEMS patient, and in addition to interrupted sleep patterns, I now have started having multiple awakenings due to bladder pressure. Attempting to relieve the pressure results in little urinary release, but simply trying seems to facilitate sleepiness on return to bed. Does any other LEMS patient have this "phantom urge"? Just about anything seems logical if a person has nerve issues.
Lori Dunham
Hi Alan. Sorry I just saw this. I appreciate your question. You may want to post on the forums and will probably get more of a response. My daughter has not had experience with bladder pressures.