Sleep drugs fiasco! Any thoughts? - Fibromyalgia Acti...

Fibromyalgia Action UK

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Sleep drugs fiasco! Any thoughts?

whisperit
whisperit

I have had very poor sleep for the past 2 years or so, with a random pattern. Some nights, I drop off easily, on others, I lie awake for many hours. In any case, I wake frequently and sleep quality is always poor, with many dreams and sleep paralysis. On the best nights, I sleep for up to 4 hours, waking once. It's not obvious what causes the problem - I can work out no pattern to it and always feel exhausted and sleepy. My pain is generally low and quite well controlled with Zapain, and I am on a low dose of prednisolone (4mg a day) . I also take 20mg amitriptyline at night. I'm awaiting assessment by endocrinology for a possible thyroid/adrenal problem.

I have recently seen 3 medics and each has recommended a different solution. My rheumatologist says to increase the amitrip and start on gabapentine. My neurologist says to stop the amitrip and start on a SSRI. My GP suggests dropping the amitrip and start on duloxetine.

Obviously, I would like to sleep like a normal person, without using drugs.

What to do?! x

13 Replies
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Oh my oh my - too many cooks :) ! Difficult one indeed. Personally I would take advice from the one you trust the most although I would probably wait for the thyroid check first. Unfortunately I can't take prescription meds so have to rely on other things so can't help with the benefits of one drug over another. Any reduction of one drug and the start of another needs careful medical supervision. No doubt someone will be along to give their thoughts soon but thought I would just reply so you don't feel ignored :)

whisperit
whisperit in reply to Dinkie

Thanks Dinkie, I appreciate the thought, and it may also be practical. In principle, all the points you make seem good. Up to now, I have always tried to operate my drug regime on the basis of "one change at a time". I'm not attracted to any of these options though, if I am honest. Unfortunately, I wont see the endos until March...x

Dinkie
Dinkie in reply to whisperit

I know the problem - I tried so many before coming to the conclusion that my body seems to reject and react to everything in the drugs arsenal so I rely on supplements, chiropractor, hypnotherapy, gentle exercise and a diet of fresh food made from scratch with absolutely no additives and gluten free bread. Seems to work reasonably well for me as I am still in work!

whisperit
whisperit in reply to Dinkie

Sounds good. I've already had to give up work in order to be a full-time invalid. It's an exhausting business! x

Dinkie
Dinkie in reply to whisperit

Poor you. I've just had the "reasonable adjustments" meeting and reduced my hours. Can see the inevitable looming but until then onwards and upwards!

Hmmm what a dilemma. I have a terrible sleep pattern also but don't take anything specific for it. I just tend to let my body sleep when it wants to now days.

In my opinion amitriptyline is over rated.

Gabapentin can have some excellent results but doesn't work for everyone. I took it for a while and it did nothing, but then everyone's different.

Duloxetine combines the best of both worlds with just one med. Pain relief and anxiety relief.

I take an ssri and have found it very helpful. When I first started on it, it helped with sleep too so that might be something to think about.

There are interactions between these though so you can't for instance take an ssri and amitriptyline.

Personally I would change from the amitriptyline which clearly isn't doing its job very well with you and if your pain is under control I wouldn't think you'd need Duloxetine or gabapentin either. I think I'd give the ssri a go but then it's your choice.

Good luck X

Thanks Georgie-girl, that's really useful. Sounds like you've learned from experience :) Like you, I am very keen to let my body work out its own sleeping pattern, but the trouble is that at present it is failing miserably...x

Hi, I found gabapentin good for pain not sleep but also caused weight gain.. One of the side effects of ssri's is insomnia ! Duloxetine is an anti depressant that is prescribed for fibromyalgia treatment, I would rather try the duloxetine to start with, good luck with your decision. Ps, I use lavender oil or frankincense on my feet to help me relax and sleep.

whisperit
whisperit in reply to Shazzzy

Thanks Shazzy, I've had enough doctor's advice - the people who have experience of using these things usually know best! x

Your sleep pattern sounds similar to my own. I have had a few sleep studies done (in an attempt to discover if my fatigue was due to sleep apnoea). It wasn't, but every test highlighted that my sleep is disturbed throughout the night - my pulse rate spiking constantly. My last test showed that I woke 266 times, averaging 31 times per hour. I feel like I have multiple dreams every night. I also have hypnopompic hallucinations - I have been told these are probably due to my severe sleep deprivation.

There is information about non-restorative sleep disorder in people with fibromyalgia, but nothing in mainstream texts - more research to be done. I do think this could be a key area though. Experiments have been done on people who do not have fibromyalgia, waking them up throughout the night and not allowing them to go into deep restorative sleep. Within 3 days they showed symptoms of fibromyalgia! Some research asks which came first... the sleep disorder or fibromyalgia.

I will be having an indepth overnight study done at Papworth Hospital in December. The consultant says it is likely they will find the same issue - multiple awakenings all night - but that they may not know why. She did mention they may suggest weird treatments afterwards if my GP agrees, so I'm not sure what that might entail. They are a research clinic, so I'm happy to be a guinea pig (within reason). Apparently I am an interesting case ;)

I take 30mg amitriptyline and 5.75mg zopiclone, the latter to help me to get to sleep. My GP said it would not help me stay asleep, but would help me to get back to sleep when waking during the night. Like you, I still have nights where I seem to take an age to get to sleep though.

I hope you can find something to help you sleep better.

Pip xx

whisperit
whisperit in reply to pip_r

Thanks Pip,

Yes, that does sound similar. I have always been prone to sleep paralysis but otherwise my sleep problems have appeared only after being on UCTD meds. My rheumy then diagnosed FM after a year of disastrous sleep and increasing daytime fatigue. I suggested that the chain of events was started by my UCTD meds interfering with my sleep/wake regulation. Waking repeatedly with a racing heart, sweating and nausea seemed to me to point to cortisol problems. But tbh, none of the proposed solutions thrill me as none seem to address the issue of why the whole mess started in the first place - it's just throwing still more meds into the mix.

I have tried zopiclone and like you, find that it does make it easier to drop off, but the sleep quality seems no better.

Hope things go well with your experiment! x

Thank you - a long reply is good! Lots of ideas to work with there. As you say, some of my symptoms are very similar to having anxiety, and when I describe the acute episodes, my medics often jump straight in to say "Aha! You are having an anxiety attack!" The trouble is that there is no anxiety attached to these physical symptoms - I am a very chilled person and even when experiencing the racing heart, sweats, nausea etc I don't have anxiety thoughts - it's a more purely physical thing.

Anyway, that's by the by. Thanks again for your ideas, they are very helpful x

Thanks. Of course you are right about the subconscious side of things, and there's certainly plenty to get anxious about!! :)

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