I am really struggling. I have had ME/CFS for over 20 years and last year when I saw a different doctor to my usual GP, he said I had Fibromyalgia as well.
I am having great difficulty in sleeping, when I do get to sleep I only sleep for 1-2 hours before waking again and struggle to get back to sleep again. I am in constant pain and I think that is the reason I can’t sleep. The more pain I’m in the harder it is to sleep, the less sleep I get the more pain I am in. It’s a vicious cycle.
I have spoken to my GP about this but haven’t really got any help, the only pain medication she prescribes me is paracetamol and very occasionally she will prescribe Co Codamol but not often.
She prescribed Melatonin once but that gave me horrendous migraines so I couldn’t take it, it didn’t help with sleep anyway.
Due to not sleeping it causes me to be bed bound on some days, I literally don’t have the energy to get up or even eat properly.
The pain gets worse during either hot or cold weather.
I am on a waiting list to see a rheumatologist due to a low white blood cell count, have never seen one before.
Does anyone have any suggestions on things that might either help the pain or help me to sleep?
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AlphaWolf5195
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the absolute best thing I have ever done wrt pain is to give up diet coke and everything else with artificial sweeteners in.. Definitely need to check everything from yoghurts to ketchup these days since the sugar tax.. Worth a go?
Many thanks for your reply. I did try several years ago giving up on artificial sweeteners as I know my Mum can’t have them but unfortunately it didn’t make any difference to me, although I do find that sugar makes things worse so have to make sure I don’t have too much sugar in my diet. I might try coming off the artificial sweeteners again though to see if it helps this time, anything is worth a try.
Hi my sleep pattern is similar to yours, as I’m woken up by the pain constantly. Begrudgingly my GP prescribed Zopiclone 3.75mg “knock out” pills that he said were addictive & I could only have 28 to last six weeks. I couldn’t wait to take one & have a great night’s sleep… I was awake within the hour & every hour & a half throughout the night🤦🏻♀️ I persisted & kept trying them, but to no avail😒
I also find many pain prescription drugs don’t work for me - Oramorph, Zapain, Gabapentin, Pregabalin, Duloxetine, codeine, Naproxen to name a few & steroid injections don’t work on me either…😶
Many thanks for your reply. I am so sorry that you suffer the same as me.
You aren’t the first person I have heard that Zopiclone made things worse. My Father had them same problem when he tried them once years ago.
I had oramorph once for an unrelated problem when I had hurt my shoulder, that made me nauseous and sick. My GP said she thinks the stronger painkillers probably affect my stomach, I presume this is why she hasn’t tried me on anything stronger than paracetamol.
I take Lansoprazole for my stomach & am back on codeine/paracetamol (for my bulging discs L4/5, nerve damage down my right leg/foot that’s like having permanent sciatica 😖), not that they do much good…
No sleep is the worst thing ever!! Ask your GP to refer you to your local Pain Management Team. They really helped me with alternative therapies and understanding pain.I know it's hard but keep moving, gentle exercise little and often is better than nothing. Have a look on Youtube.
It's taken me a long time to listen to my body. Use distractions such as meditation, breathwork, ice or heat whichever you can tolerate - learnedvthese through Pain Management Team.
Have a look at blessed beez balms and bars, nettle and lemon has worked for me and taking magnesium at night time.
Just a few things that you could try. Hope this helps xxx
My district nurse has mentioned the pain clinic in the past but nothing has ever been done and I have never been referred.
I have tried to meditate before but have never succeeded in doing it, I think I must be doing it wrong. All it ever does is make me feel more wound up. I find it incredibly hard to relax. It is as though my body is in constant fight or flight mode. As soon as I feel my body start to relax it will then jump and jerk, which I can’t control, this makes me tense again and really annoys me. I think if I could just relax, I would feel so much better.
I will look out for blessed beez balms and give them a go, thanks for the suggestion.
I already take magnesium at night, it hasn’t helped with the sleep but did stop the muscle cramps I used to get.
I thought I would be rubbish at meditation. But because of symptoms I had to stop yoga, but found a chair yoga by a Canadian Physiotherapist dept, LEAP services, via you tube. They also do a range of meditations that guide you? So you listen to their voice to help relax and breathe better. Worth a go, it really does work for me - some are only about 5 mins long,so not too taxing.I stop any ipad, tv , radio, phone things a good hour or more before bed, then do a few gentle stretches and read to relax. Hopefully it means my head isn't overestimulated and I can relax better.
Oh Epsom salt baths are supposed to be good, a form of magnesium which others have said helps.
I use amitriptyline for fibromyalgia pain and take that 2-3 hrs before bed,and a small dose of an AD for moods, both help me get to supermajority and stay that way. Though obviously some people cannot take meds and how they work can vary as to each individual. X
Hi, I am sorry you’re feeling bad with the pain. I don’t believe just one medication can help with these conditions because they are so varied. I have been on a mixture of meds for years, amitriptylene, meloxicam, and co codamol. It took years to find the mix that works for me so it might be worth trying different mixes if your doctor is helpful. I also found pillow mists helped to relax me enough to drop off again if I sprayed them when I woke up. I keep them by my bed so I don’t have to hunt for them and just spray as necessary. Good luck. I hope today is a good day for you.
Many thanks for your reply. Every time I mention the pain and lack of sleep to my doctor she doesn’t really give me an option of help other than occasionally prescribing Co Codamol. I am on several other medications so it is possible that they could interact with other medications so maybe that is why she hasn’t prescribed anything else. I also have a couple of other health issues she is referring me to specialists for, so perhaps she wants to get those sorted first.
Which pillow mist do you use? I’ll give that a try. Anything is worth trying in the hopes it helps even just a little.
Hi, there is one called This Works , that really does but you can get others from Boots or Amazon . I find them very helpful and they work on the dog too if there are fireworks or it thunders. I hope they work for you too. I am having the opposite problem at the moment and sleeping too much even when I’m in pain but that’s a neurological problem. It’s never easy to get your meds right but I hope you succeed soon.
Hi I take pregablin low dose for my fibro I took have ME and PoTs and other chronic conditions. The pregablin I take at bedtime and helps with sleep . Worth looking at
I’ll look into a magnetic bracelet. I’ll try anything to help.
I am already prescribed Fexofenadine daily which is an antihistamine, for allergies, although I think it is non drowsy, at least it doesn’t make me drowsy. I am not sure whether I can change it or take another at the same time, I’ll have to mention it to my doctor and see what she says.
i looked for anything that could make a difference and researched a lot then thought about it reading everything before committing , there are reiews that say magnets dont help, so its a test yourself situation.
am also on certirizine for allergy's 10mg 1 a day.
I've also had ME/CFS for 20 years and recently told I have fibromyalgia too. I sleep on the sofa, as I can find more comfortable positions there. I use a bed wedge to lift my upper body which helps a lot with back pain, a pillow, the sofa back and various cushions to fully support my body and head in the most comfortable positions I can find. I have my knees bent so I can fit, but that also helps with my back. I find I need to change positions every time I wake up, or I get very stiff and achy. If I move onto my side, I only go on my left side to avoid acid reflux, and I use a cushion between my knees, and also one to 'cuddle' as it helps with shoulder pain.
I take co-codamol, but I try to keep the dose down and only when needed, usually in the evening or if I can't sleep for pain. It can take up to an hour to start working. If I don't have any for a day I get withdrawal symptoms of upset stomach, but mostly I need them every day and I haven't noticed any negative effects otherwise - I've been taking them for several months now. I get my doctor to prescribe me the 30/500 and the 15/500 so I can adjust my dose more. They were reluctant and I have to have regular talks with the doctor to convince them I need them, but luckily I can usually do that online or over the phone. I've also tried the over-the-counter dose of 8/500 which sometimes takes the edge off the pain but mostly doesn't work. Paracetamol alone does nothing.
I keep the radio on all night low volume - Capital Chill works for me. Helps a lot to keep my mind more relaxed. I used to listen to talk radio but found that stressful.
Gentle stretching daily makes a huge difference for me - I lean on the kitchen counter for some leg stretches and I lie on the bed for back, arm and leg stretches. Upper body twists, that sort of thing.
Many thanks for your suggestions. I’ll try them out.
I do sleep on a wedge pillow and have a pillow between my knees and one behind my back (I sleep on my side) but I haven’t tried one to cuddle, I will give that a go as I do get a lot of shoulder pain.
My doctor is reluctant to give my Co Codamol and will only prescribe it occasionally.
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