I have sleeping difficulties due to fibro / pain as I'm sure Majority of us here do. It's weird tho because it seems to cycle through phases. Eg at the moment I am about 5 weeks into a bad patch where I'm lucky to get 1-2hrs sleep a night - the rest of the night is spent tossing and turning unable to get comfortable and it's like my body is in a state where it just won't switch off / doesn't get that feeling where sleep is coming despite total exhaustion.
The problem is that by about 6:30am I can actually drop into a deep sleep, but the alarm goes off at 7:40 and I have to get going. As you can imagine by that stage I am so groggy it's hard even to eat breakfast, let alone go and do a day's work.
Really struggling. Any suggestions appreciated.
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Dbry
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Thanks for the reply. I don't have one of these but do use 4 separate pillows to support various body parts, plus additional low back support. I have a good mattress and was formally a front sleeper but after following advice to back sleep some years ago (which I persisted with but hate) I can no longer front sleep as it does my neck in (whereas previously it wasn't an issue). Side sleeping is difficult for me.
I have similar issues, so while I do not have any answers I do understand
Do you have a bedtime routine? General sleep hygiene like no caffeine in evenings, regular bedtime, listening to calming music, no phones etc can help towards a better sleep for some
Thanks for replying. I'm trying this sort of thing but I don't feel like it's an issue of relaxation.
Bit wishy-washy but it almost feels like the energy in my body is stuck / not free flowing. I think that's because of the constant pain and inability to find some way of resting (any resting, even daytime - sometimes when I'm so tired and laying down is all I want to do that just makes the body pain worse so it's like I cannot find any position to feel like a resting position). Sitting is unpleasant for me so it's not restful.
No easy answers. Thanks anyway for your suggestions, I will review and see if there is some other routine thing I can try.
Totally understand what you mean about energy feeling blocked (not wishy washy at all)
So many things contribute to our inability to have a decent sleep - pain, stiffness, finding a comfortable position, being too hot or cold etc.... And that's before you even add in the unrefreshing sleep factor no matter how long you sleep for. Xxx
I can identify with that feeling of finally dropping off in the morning when it is almost time to get up, I don’t think I’ve ever been a morning person but since fibro it’s been much worse. I personally don’t find a drugged sleep helpful, but do try what I can to help me relax and try to get comfortable.
Pillows to help support my body, books or puzzles to try and wear my brain and eyes out. I try to avoid just lying there tossing and turning as I just get wound up with myself. I’d rather sit up and go to bed in the early hours than lie awake in my bed.
If you’re feeling that energy is blocked then maybe some sort of meditation or relaxation exercise that is specific to aiding sleep would help? There are plenty to choose from on YouTube. Hope you get a good night soon, even one just makes so much difference x
Hi there, I used to be as you are with the wanting to go to sleep as soon as the alarm went off. It is torture, I know how you are feelingThen I got diagnosed with fibro and started Amitryptiline at night I found it really helped me to get to sleep for first time in years - I still take it 5 years later
What I will say though is I was also advised to have a night time routine like a 2 year old 😂 no sweet stuff, no caffeine etc etc ...think this also helped
Unfortunately, however, I still do not get much very deep sleep which is the restorative sleep fibro sufferers do not get, so I still feel tired even after 8-9 hours sleep ... heyho but at least I can function with the sleep I am getting
Would you maybe go back to your doctor and ask for help as only 1 - 2 hours sleep is really going to affect you I'm sure
Sorry to hear this it's a horrible condition have you tried a weighted blanket?I bought a double one which was too big as hubby doesn't want it on him so I've just got a smaller one which is much better takes a few nights getting used to it but it certainly helps me good luck xx
I've not tried this, but the weight of a normal cover on my feet makes me uncomfortable (painful calf's and foot position makes it worse / better.) So I would imagine a weighted blanket would push my feet down further?
Hi I know what you mean it is terrible. I use heat pads for my pain they peel off like elasto plast and you can stick them any where on your clothing. I don’t know where I’d be without them. Maybe try them and if it eases the pain like I find hopefully you get a few hours 😴
I have a soak in a warm bath with Epsom salts for 20 minutes a couple of hours before bedtime and then I sleep like a baby. Works every time and it will cost you pennies to find out if it works for you. I also use Magnesium oils which I rub into my tummy and arms. Be careful if you do this because the first few times you do it, it might irritate your skin slightly in terms of an intense tingling sensation.
There is a few things to try that may or may not work. 1)If you have Netflix, look up headspace. There are tons of meditation videos you can watch and listen in bed on phone or TV. Believe me it's amazing how quick you relax and sometimes I fall asleep during.
2)If you haven't already tried it, buy some magnesium sleep spray from Amazon. I spray it on my legs and this helps with my restless legs.
3)If you have pain in your legs, try a tubular bandage. I buy the longest one and roll it onto my entire leg. I have no idea why this helps my pain but it does most of the time.
I know exactly what you're going through. I tried everything anyone ever suggested and nothing worked.I to would be awake after falling asleep for maybe an hour, then up all night until around about 6am. Then spend the day in a sleep deprived stupper.
The pain clinic suggested pregablin which has worked brilliantly but now having to slowly come off it due to the new NICE guidelines.
Yes this is almost like me, once I drop off I'm awake within the hour then can't sleep all night til early morning.
I've tried amyltriptine(?) But this has the opposite effect and keeping me awake + making my migraines more frequent and leaving me zombified during the day worse than no sleep! It did reduce the pains but I had to give up after about 6 weeks of trying because of the side effects.
I've also tried prescription melatonin which helped me feel sleepy but then wide awake by 2am and groggy in the morning. Plus gave me belly aches.
I think I need to approach my dr again - he gave me a script for tmaz (?) But have been too afraid to take it as I am very sensitive to medicines and the effects of this one look worrying (ie if you take it and can't sleep it is dangerous +also apparently it knocks you out very quickly for 8? Hrs - however if i lay in one position too long my arm(s) go completely numb (as in totally numb and i cannot feel them or move them at all - usually only one side at a time but it is hell scary cause it feels like they might not come back sometimes, so if that happens when knocked out it might be damaging cause I'm guessing the blood or nerve supply is being cut off when this happens so should not be like that for too long).
Also appreciate all the replies from everyone. Thank you.
I've used Zopiclone and Tamazepan although I only get 10 pills for 6 months so they're not any kind of solution for chronic insomnia. Zopliclone has a very short half life so leaves your body between 2 to 4 hours. Even with Zopliclone I only sleep for about 3 hours and I still get up to wee every hour and a half. I have not slept well since childhood and if I do sleep I sleep in a reverse cycle. This means my first wave of sleep is shallow and then gets incrementally deeper which means the deepest sleep I get is between 6am and 8 am. My neurologist says I don't get stage 3 or 4 sleep so no proper deep sleep as such anyway but also have 3 year old and 7 year old so can't sleep then anyway.
Melatonin had no effect on me, or anything else like nytol etc. I have strict sleep hygiene but unfortunately I think has actually just contributed to my sleep neurosis! If on the rare occasion I do sleep it tends to trigger migraines and really hurts my hips, shoulders and back etc. It's loose loose. Sorry to moan and not help but I share your pain!
The same things happens to me while I sleep. I've told my husband its liver mortis only im still alive haha. Like the blood has all pooled to one side. I can still have the numbness hours later. I can only sleep on my right side because I have a compressed trigeminal nerve on the left side of my brain. I've never heard of that so can't advise on that.
I also had to stop amitriptiline, it gave me restless legs
Hi the sleep thing is so frustrating. You can go to bed early or late and it seems to make no difference. My doctor suggested a antihistamine prescribed by him. He said it is better than sleeping tablets as it's not addictive. It made me sleepy and that made me able to get into a sleeping pattern. It didn't work long term but it gave me a period of time to get some sleep undisturbed. Which improved my fatigue.
Totally been there. Gabapentin, 300mg, saved my bacon. First time taking it slept the whole night through for the first time in years. 6 months later and it's still working.
You can buy antihistamine over the counter but ask for first generation type antihistamine which does usually help with sleep. I also recommend atarax antihistamine which is only on prescription but I find really helps.
I know it has a bad rep and that the GPs really don't like prescribing it, but my GP in Australia prescribed zolpidem/Ambien (because he said his wife took it without any 'hangover' the next day.) I found exactly the same -off to sleep within 20m of taking it and no doziness the next morning. I still have some tablets from back then and I can get away with 1/4 of a 10mg tablet every so often when I really need it. The NHS has a page on its website so I'm sure it's available here and you may be able to persuade your GP to let you try it. Not all drugs of abuse are totally bad - in the right circumstances they do a necessary job
Hi Dbry! I'll try to find some more ideas for you now you're thread's aged a bit
• Sleep experts say don't toss and turn, if you can't sleep, get up, and that's one of the things I do if I'm really completely awake and feel much better for it - after 1-3h I'm tired again. Like @Jaycee18.
• If I know I have to get up and need something close to sleep I do one of Ally Boothroyd's Yoga Nidra videos, similar to what @Jaycee18 suggests. But I choose between about 6 types of relaxation types incl. my own adaptations.
• I think I have had phases like you describe, but it often depended on getting closer and closer to good sleep - some meds & supps zombified me, which wasn't effective at all, and sometimes overdosing was part of finding the right dose.
• As I'm not able to work much due to the severity of my pain & fatigue, I'm often free to sleep as long as I need or to try a longer or a power nap in the afternoons. Actually no longer necessary, cause I've got quite a good schedule now.
• Side/back/front: I know back is sposed to be good, but neither tailbone nor nose mucous agrees for long. I twist-stretch in sort of recovery position. I do neck exercises (gently), acupressure also helped, now if my neck strains I've realized I can do an exercise for 20 seconds and it's supple enough again.
• Energy stuck / not free flowing is what acupressure and acupuncture are for - tried that? They didn't help me tho, praps now I'm trying Chinese acupuncture.
• I & my acupressurist worked thru all of my local pains, got/get them down to zero, which greatly improved the nights, but I still regularly woke/wake up since fibro, so it's not just the pain in my case. When I am in pain, twist-stretching helps most.
• Same sitting: swiveable adjustable bar stool with hole at the back is the best chair, mostly I sit on a pad on the floor, leant against my sofa, with laptop on lap or me twisted to the sofa.
• Amitriptyline was a crutch for 4 months 2 years ago, learning other techniques, but it gathered together 8 side effects, so I was very happy to get a clear head etc. again. Like you and your migraines it increased my focal seizures, zombified me and wasn't restorative sleep. Similar melatonin, like you, even when reducing to 5% of the 2mg tablets. Like you I'm very sensitive to meds.
• Sleep hygiene routines don't help me too much, but identifying triggers, and preventing them, like blackout blinds, ear plugs etc.
• I'm like you with weighted blankets, they hurt me. Calf/foot sounds like you could do with plantar fasciitis exercises? (youtube)
• A hot water bottle sometimes helps, sometimes it's horrible, so Bar123ney's stickable ones probably wouldn't help me.
• The recommendation of magnesium on the skin (Epsom salts are magnesium too) is common, so it seems to help some, but that has no evidence (praps placebo?), so I prefer taking magnesium malate / glycinate capsules.
• Like the tubular bandage imageIamthemedicalmystery recommends, some like compression for pain, I wouldn't.
• Getting to sleep is sometimes OK, but to get the pain, unrest and any annoying feelings down I take a very short cold shower. If I can take it. If not sometimes luke cold. Like you and SusieSquirrel I often wake/woke up after about an hour or two and then it started getting tough.
• Like @D1aughters I'm on an antihistamine (2nd gen. usually doesn't make you sleepy in the daytime, it doesn't me, which is saying something, but it is making sleepier at night). This is actually cos of my MCAS (immune system hypersensitivity to 'everything') and helps that too. I'm now able to go down with my passiflora which was my main supp for sleep (aside from GABA, and now PQQ, CoQ10, quercetin, & luteolin for the MCAS).
I'm now getting 8.5h of sleep every night, with 2-5 breaks of 15' to 70' altogether...
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