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So tired, so much pain....

anjie profile image
8 Replies

I went to see my GP last week as I've not sleeping, which makes the pain worse, depression setting in etc etc...as I've refused to take pain killers because nothing helps and I'm dammed if I'm taking morphine...he's decided to put me on pramipexole for my RLS, in the hopes that I'll sleep and therefore ease the pain...

Of all the bizarre side effects that come with these meds, which one do i get....?

INSOMNIA!!!!!!!!

But I'm not suffering with RLS too much so that's gotta be a good thing...right?

I am so tired and in so much pain...I did absolutely nothing at work today and feeling a bit guilty....

I've only been on the prami for a week so here's to hoping it will all settle down soon xxx

Little gentle hugs to you all x

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anjie profile image
anjie
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8 Replies
Ang01 profile image
Ang01

Oh Anjie, you really dont need insomnia on top of everything else do you!!. I dont sleep much and its pretty awful cos then you have no energy for much activity in the day.

I try not to take too many painkillers as I find they make me a bit like a zombie but do now take the antidepressive Duloxetine which is supposed to help with the fibro symptoms. Are you taking any meds at all, sometimes its better to take something that helps you cope and have a bit of normality than try and struggle on regardless.

I dont like the meds I take but without them I would be a whole lot worse.

Hope things get better for you soon, take care, Angela xx

anjie profile image
anjie

Thanks Angela x

I'm gonna give it another week and if it's no better then I will have to give in. I need to phone my GP tomorrow and ask if I'm meant to be taking my amitriptyline at the same time...forgot while I was there!

That might help.

Thanks again x

LindseyMid profile image
LindseyMid

Good luck. Prami side effects are tough. They do ease though.

What I had prescribed alongside the Prami was a low dose of Clonazepam at bedtime (after prami) to help me sleep through the worst side effects. Clonazepam also helps with the sleep quality issues of Fibro and has a muscle relaxant effect, so it can be a good all-round medication anyway. Taking it at night only and at a low dose reduces the risks of side effects and addiction.

Try and follow good sleep hygiene (ie. relax before bed, go to bed at the same time each day, etc) to give yourself the best chance of going to sleep. You may find then that even with just the Prami you sleep better.

What dose are you on btw? With Fibro you should be starting at the smallest dose reasonable and working up if needed.

anjie profile image
anjie in reply to LindseyMid

Hi Lyndsey.

Thanks for the info,

I do follow a good sleep hygeine, relax, glass of milk, bed at the same time, etc (I've always been a terrible sleeper - just habit now)

yes I'm only on the smallest dose of 88micrograms.

and I am finding that they are helping my legs - unless I'm going through a non RLS period which I tend to do but my legs are aching a lot more, so I'm assuming the meds are helping.

If I'm still not sleeping by the end of next week then I'll speak to my GP again and mention this Clonazepam...see what he says.

Thanks again. x

LindseyMid profile image
LindseyMid in reply to anjie

Best of luck.

When I started taking Prami for Fibro & RLS, I noticed an improvement after about 2 weeks, but it took me nearly 4 months to get to a decent dose (higher for Fibro than RLS alone) because I had to go so slowly because of the side effects. I would increase the dose every 10-14 days and would then struggle through side effects for a week or more each time. It was worth it though and as I could see an improvement, I stuck with it.

Are you doing any physio to improve posture and reduce strain on the neck? Dr Holman says that if someone with Fibro might have PC3, managing this (through physio and lifestyle changes) means that Prami works a lot better (this may well be true for other meds also).

fibroaction.healthunlocked....

anjie profile image
anjie in reply to LindseyMid

Not had any RLS since starting taking the Prami, but I am in a hell of a lot of pain from base of spine to my feet at the moment too....My GP is giving me a ring on Friday so will discuss whether I should take the amitriptyline as well...which should help with the pain and lack of sleep.

That website looks really interesting Lindsey...will have a proper read later. My GP said that physio probably wouldn't help with the fibro pain...but definitely going to look into this.

Thank you x hugs

Awww bless you, i hope the new medication does the trick and settles things down for you,here's to wishing you a restful,wonderful nights sleep real soon! Hugs to you xxx

anjie profile image
anjie in reply to

Thanks Della x

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