Sleep problems in ME/CFS - discussion thread

Daughters Garmin showed much the same for sleep re light , deep and REM. Very little deep sleep at all.

 

This is very interesting, Alex. I have TONS of experience (positive) with CBT for very different issues (treatment for body dysmorphia/fear of gaining weight with anorexia, help with catastrophizing thoughts with mild depression), and since my insomnia is so bad--and is perhaps the issue that affects me most in terms of making my ME worse--I do find myself sometimes getting anxious that I won't actually be able to sleep. So I decided to try doing some CBT exercises of various sorts to see if that would calm/relax my brain. Nope. Nothing I try works.

55 years!! I thought I was bad at 30! I'm so sorry you've dealt with this for so long. I'm like you, in earlier years I was hypersomniac--but kept pushing myself through it as much as possible b/c I was in a doctoral program and also because I had no idea what was going on with me--thought either my JRA had morphed into fatigue rather than joint flares, or even that academic performance anxiety was making me "get sick" to get out of things (even though I've always pushed and never wanted to quit anything). Starting about 15 years ago was when hypersomnia turned into insomnia, and the worse my PEM is, the worse my insomnia. (can one be in PEM for months? because that's what it feels to me. My husband says that I still haven't recovered from a lovely but probably ill-advised flight a few thousand miles away to see my nephew graduate from my undergrad institution.)

One more question for all of you: when you have insomnia, do you eventually fall asleep? Because without medicinal aid, I do not. I've gone two weeks with no sleep. Not a wink. For me, it snowballs--the less I sleep, the worse my headaches, muscle cramps, tired-but-wired body and brain, racing thoughts, atrial tachycardia, etc., and that in turns mean I'm even less able to sleep.

 

Hi @SunnyK, our stories are similar. My Honours year and my PhD candidacy had me pushing myself too far, looking for a chance to upskill and get work I could do. Instead I pushed my more than mild ME until it was severe and I could no longer read, write nor even count to 3. I had already started to figure out pacing, but it was years after that before I fully figured out how to pace.

On long term sleep disruption, are you salicylate sensitive? Does eating a teaspoon of butter help? How about evening primrose oil? How about antioxidants, including NAC?

I know of some patients who get worse and worse sleep the bigger their crash or exhaustion.

 

Thank you, Alex. I never got as bad cognitively as you have, but I am not learning pacing very well (partly b/c dealing with all my comorbidities requires mangement, medical appointments, etc).

Yes, I would say the bigger the crash, the worse the sleep. But also, the worse my sleep, the worse I crash/am exhausted.

I recently tried melatonin, both afternoon and eve doses since I can't function w/o afternoon nap, and it was amazing. But since I'm already on several sedating meds that need medical supervision to stop, I need to wait till I can talk to the prescribing doctors on how to taper those before restarting melatonin. (With the melatonin, I was needing much less of, for ex., clonazepam and gabapentin, but researching online suggests that tapering or stopping those on my own could be dangerous.)

Can't have salicylate (Hx of stomach ulcers) or butter (gastroparesis). What is NAC?

 

Lots of salicylate in lots of food. I presume you are using safe food lists.

NAC = N-Acetyl Cysteine, a glutathione precursor. Theoretically it might help with salicylate problems, but I know of no concrete evidence, only theory. The enzymes attacked by salicylates are primarily regulated by glutathione.

 

Thanks for this, Alex. Very helpful.

 

Article: My insomnia hell: sleeplessness is a curse – but I think I finally have the answer [not ME/CFS related but familiar 'cures' that didn't]

https://www.theguardian.com/lifeand...a-curse-but-i-think-i-finally-have-the-answer

 

Thanks for sharing the link.

TL;DR (summary) for folks who need it:

The author is diagnosed with “moderate obstructive sleep apnoea” and is advised to avoid sleeping on his back. He says that he might need CPAP machine if that doesn't work.

 

What is the safe foods list?

As an update, I am now using the visible Plus app with the polar Verity sense armband, and it is really helping me learn to pace although perhaps too late, as I am now housebound and mostly bedridden and I'm having to look into getting home health care. Just a few months ago I was able to walk around the house and even go outside into our yard but now need to use a wheelchair around the house because standing puts me into anaerobic heart rate levels.

I haven't noticed that the pacing is helping with my sleep yet, but I do notice that the days when I go way over budget with my pacing, I do have worse sleep along with other symptoms as one would guess would happen.

 

Here is an example, though I have seen much better lists over the years -

https://www.drugs.com/article/low-salicylate-diet.html

Avoiding the very high salicylates might be useful, but my personal experience is avoiding nearly all might mean if I accidentally contact or eat them I have a much more severe reaction. Regular amounts at low doses worked better for me.

There is a trap here though. Large amounts of lower salicylate foods might be worse than small amounts of high salicylate foods. Its the total that matters. So tolerating a small dose of a food does not mean you will tolerate a larger dose.

Right now I remove most of my salicylate problems, but not all I think, by eating small amounts of butter regularly. Fish oil can also be useful, at least theoretically. Some thirty years ago the first molecular targets of salicylates were identified, delta-5 and delta-6 desaturases, which are on the paths to make moment to moment hormones called eicosanoids. Fish oil and butter, and of course evening primrose oil, bypass the block but in different ways. However its not clear you can completely remove the issue by bypassing the block, at least so far as I know. Right now on butter and fish oil I only have one symptom, generalized weakness, that might be salicylate related. Or it might not, I have other issues going on.

I do not know the latest science on this, so cannot be sure things have not changed in our understanding of the molecular issues.