What If Fibromyalgia Runs Backwards? The Sleep Experiment Nobody Repeated
81K views · Aug 24, 2026 · Education
Comments · 212
@Idrinklight444 · 1 month ago
Actually waking up feeling worse than going to bed, waking up fatigued…….
69
@hyperion-MD · 1 month ago
Muscle pain while one is sleeping is a catalyst to poor sleep. So a catch 22
16
@XenaWarriorPrincess-c4k · 1 month ago
Im 65 now, I've had fibromyalgia since I was 20. I've been a chronic insomniac since I was born, in fact I had night terrors, so I never got decent sleep. I am also ADHD and ppl like us have a very hard time sleeping. Even now tho I'm disabled and theoretically can sleep as much as I want I still can't get very good sleep. I really appreciate the video, I will share it with other fibro ppl.
33
@dorsetlyn4224 · 1 month ago
There was a German study some years ago that suggested that people who are night owls are more likely to get fibo than larks. I'm a night owl and 50 plus years of school and work forcing me to ignore my body's chronology can't have done me any good and I've got fibromyalgia.
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@nlm529 · 1 month ago (edited)
My fibromyalgia and insomnia started a while after experiencing symptoms of PTSD, which was subsequently diagnosed as Complex PTSD. It makes sense that being in flight/fight/freeze mode continually would affect the muscles and then impact the sleep. Insomnia/poor sleep makes my fibromyalgia worse.
47
@MagpieMamaMakes · 1 month ago
The next time a doctor suggests graded exercise and other lifestyle changes to me, I might legitimately snap. Fibro, CFS/ME, epilepsy, POTs, gastropareis and a C-spine osteo arthritis? I'm done diddly done with doctors at this point who think I can out exercise and clean eat my way back to decent health.
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@WeideVanEnt · 1 month ago
Low dopamine is also an indicator for ADHD, a group where a higher than average percentage of people have restless legs syndrome and a lot of sleep problems. And many fibromyalgia patients have ADHD or are on the autistic spectrum.
29
@sarahjensen2473 · 1 month ago
I had weight gain and restless legs as side effects of medication before the fibromyalgia kicked in. Doctors often dismiss side effects, but the repercussions can be huge.
19
@starflower703 · 1 month ago
I have not had sleep apnea nor do I have problems with restless leg syndrome. However, I have had fibromyalgia since I was a teenager. I was diagnosed at age 28. I am 61 now. When I don’t sleep well, my pain is much worse. Thankfully Ambien works really well for me. Learning to pace myself and listen to my body has been very important.<br><br>My opinion is that I have lived in fight or flight since I was a child. Sleep has always been something I struggled with even as a child. It took me 30-60 minutes to unwind and sleep as a child. Due to abuse in my home, I was often woken during the night. Now my body wakes at the slightest noise, disruption and even things other people would sleep through.
14
@onishaellis6614 · 1 month ago
I have found that getting adequate and restful sleep manages my fibro but emotional stress activates a flare.
7
@MsSpook14 · 1 month ago
When I was on CPAP for my sleep apnoea my CFS was no better. My sleep was worse as I’m really claustrophobic with the mask, and a moth breather. I cleaned the equipment daily the dry mouth and eyes got worse and repeated chest infections even with a humidifier, my sinuses pained. Lost nearly all back teeth from the dry mouth. Eventually gave up. Sleep clinic were not very helpful. Had CBT numerous times for CFS and fibro, didn’t help at all either. Soon as you mention CFS to a GP you get the sympathetic look then they lose interest and glaze over. One GP even said ‘it’s not worth you coming to see me unless you’ve got something I can fix’. Had prev positive ANA, likely lupus. Tests now negative but joint pain and dry eyes and mouth terrible. No referral to rheumatology as they don’t accept negative result patients now. Feel at a bit of a loss tbh after 39 years of health issues, 58 now. Thanks for speaking up for us, so few do.
29
@christineschmidt256 · 1 month ago
Truly interesting that the lack of deep sleep may be a factor in turning on the fibromyalgia gene. I started loosing deep sleep during my postpartum and my children's early years. Because I was the stay home parent, the burden of sleepless nights fell to me, thinking I would be able to nap (and I did) during the day. But we know now napping is not restorative deep sleep. On reflection, it wasn't long after that early Fibromyalgia symptoms began. I wonder if this might be also one of the reasons why women more often have Fibromyalgia, due in part to motherhood/postpartum sleep disturbances. <br>Thank you for continuing to share information that is clinical and digestible to us.
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