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.

 

Does anyone else experience symptoms only at the point of falling asleep, which may indicate something about what is causing the sleep disturbance in ME/CFS?

When I first became bedbound, it was at the point of falling asleep where temperature dysregulation (extreme overheating to the point I couldn't tolerate any clothes or bedsheets and had several fans and the air conditioner blasting at me), tachycardia, and intense full body-shaking all happened. It felt like whenever my body tried to initiate the process of sleep, instead a cascade of these horrors was triggered.

Now, it's almost 3 years later. In that time, normal sleep disturbances (waking throughout the night or much earlier than normal) became some of the earliest signs of major PEM or deterioration. But in the last few weeks, I've also started having flare-ups of what a doctor told me was mast cell activation (hot and itchy, prickly skin) right at the moment of falling asleep and being awoken by that. I'm wondering if something similar has happened to anyone else?

From observation, I think these itchy episodes are directly related to how active my illness is - when they happen during the daytime, they're something that only occurs while I'm actively having my energy limits pushed, usually when I'm getting worse.

 

I too sometimes have problems just at the moment of going to sleep but it is more temperature dysregulation. I'm in one now, awake after settling down to sleep but being disturbed by the temperature alterations.

I become very hot with a band of sweat around the top of my forehead. The fan then goes on and if that is not enough, the aircon unit. Bedding has to be adjusted- duvets removed, a light throw replacing it.
Itchiness particularly in my throat causes bouts of coughing. I'm nowhere near sleeping.

I had been in quite a good sleep spell after responding well to daridorexant but that isn't working currently. I'll consider tomorrow whether the illness is more active . A quick response would be 'yes' : a mix of a holiday, and several medical appts on successive days has drained me. I fell asleep watching tv this afternoon, not my usual pattern at all.

We have a new bed with a very comfortable mattress but that isn't helping. Ugh - I'll just need to wait this out. . I've been resting hard for two weeks and 2 days apart from the med appointments.

I have never correlated episodes of poor sleep with illness deterioration. The poor sleep just seemed to be a common feature of my life generally but it certainly needs consideration.

 

As pwME we often discuss problems with insomnia, hypersomnia & other sleep disturbances but does anyone else experience a highly prolonged period of "sleep inertia" - i.e., do you spend an unusually long time in that liminal state between sleep and wakefulness, and does that experience differ significantly from before ME onset?

I was thinking of describing my own experiences but I'd like to know how common - or unusual - this actually is...

 

I have a question concerning my personal sleep.
How concerned should I be that at least 1 night a week I look at the ceiling and cannot fall asleep for the life of me, last time I check my clock it shows 3, almost 4 AM then I fall asleep unexpectedly. I need to wake up before 7AM, and this almost always happens on a Sunday-Monday night.

Is this normal, am I normal?

 

Normal for many of us, but no, not normal for healthy people.

 

Horton,
I don't experience this right at the moment of falling asleep, as you do, but I am experiencing thermal dysregulation ( I always need the fan on in my bedroom and wear minimal clothing, particularly when I'm crashing (and I've always been someone who was cold when everyone else was warm)) and have had severe overall itching without a rash near constantly since the end of June. Sometimes the itching wakes me up, as it did very early this morning, and it does make my insomnia worse.

I noticed both these symptoms as my ME worsened. Interestingly, my me doctor had already prescribed for me ketotifen (an H1 antihistamine) at the end of April but for the purpose of helping me sleep. But it didn't prevent or help the itching. I finally broke down and had my husband drive me to my GP last week-- too hard on my body to leave the house, but I'd tried everything suggested, from getting bedding changed and washed in hot water regularly getting room vacuumed (although that initially makes the itching much worse, confirming my sense that I've developed a dust allergy), taking colloidal oatmeal baths when I can make myself exert that much energy, etc., using only lukewarm water, staying hydrated, using anti-itch lotion, etc.

My GP prescribed hydroxyzine, another H1 she said is the primary antihistamine for itching. Unfortunately, taking it has meant having to reduce the dose of my SSRI antidepressant because of the risk of QT prolongation, And even though it is supposed to have sedating effect, my insomnia has been worse. And I have felt like crying all the time. But if you are not on an ssri and don't have cardiac risk for QT prolongation, you might see if you can get a prescription for it. I don't know that it will help with the thermal dysregulation, but it might help with the itching. I can't take it often enough for it to make much of a difference for me, but one can take it up to every 6 hours.

Good luck. I know all these symptoms are miserable.

 

Oh me too, on each count! I tried high dose fexofenadine first, then added montelukast, then tried loratadine and phenergen instead, and nothing made it budge. Until I became very severe, there was no visible rash either, and now it only sometimes happens - lots of little red dots or red puffy zones on my hands, and hives if it's a particularly bad episode. It makes me feel as though I'm allergic to the emotion of surprise, or to chilli peppers!

Sorry, I'm getting too excited at encountering someone else who experiences this. I've spoken with some people who have had success alleviating these symptoms only with a combination of H1 and H2 antihistamines (no improvement on just one or the other), so I'm planning on trying nizatidine + one of the over-the-counter H1 antihistamines next.

I really hope you find something that gives you some relief soon! It's so much more debilitating than it sounds.

 

I'm on a lot of meds just to allow me to sleep. Without even one of them, I, like many of you, get ever increasing insomnia that leads to heart arrhythmia, leg cramps, other issues. Some of my docs in the past have said sleep is most important, so not to worry about all the meds. But a few seem to be habituating: clonazepam and gabapentin. Understandably, my new rheumatologist and my mom in law (a biologist) want me on fewer of these, and I'd love not to need them. Rheumatologist says I shouldn't be needing any meds to sleep and has recommended CBT insomnia, which seems to be a proprietary app. (I have trouble with screen time. Part of the sleep hygiene I've practiced for years involves no screens at least an hour before bed, preferably two, and having my phone screen on grayscale while using blue light blocking glasses.)

Has anyone else tried this? It is helpful/a good idea?

 

I'll have to look up medications that you mentioned. I will say that I am doing a lot better having started hydroxyzine, although I am really itchy right now as the last dose is starting to wear off. Adding an H2 antihistamine might be a good idea-- thanks!

Good luck to you!