RLS +

[soupersuzy]

Although I started many years ago with RLS I now seem to have progressed to whole body jerks. It's like when just going off to sleep you think you've tripped or fallen and a bodily jerk wakes you up. That's what I get every night, as well as the creepy crawly sensations of RLS. Does anyone else have these symptoms and if so what have you found helps, if anything.

[SueJohnson]

How much pregabalin are you now taking?

[soupersuzy in reply to SueJohnson]

At week five and only up to 150mg. I really wanted to stay at that level as several people on here seem to have success at that rate but think I'm going to have to increase.

[SueJohnson in reply to soupersuzy]

Yes that is still a low dose. According to the Mayo Clinic Updated Algorithm on RLS, most people need 200 to 300 mg.

[soupersuzy in reply to SueJohnson]

Is a 50mg increase ok. I've got to 150mg by 25mg each time.

[SueJohnson in reply to soupersuzy]

It is better to do 25 mg and if that doesn't work in a couple of days increase it another 25 mg etc until you find the dose that works for you.

[soupersuzy in reply to SueJohnson]

Thanks Sue the last couple of nights have been better as I've been taking codeine as well, prescribed for a back injury, but that is a lot better now so will be back on just Pregabalin. If no better I have some 25mg and will follow your advice.

[yorkie24 in reply to soupersuzy]

It may be worth checking if you can be prescribed codeine for your restless legs. It is the one drug that has helped me the most. I take mine along with Gabapentin. Not sure if you can take it with Pregablin but worth checking.

[soupersuzy in reply to yorkie24]

I was taking codeine for a few days as I had a back injury and my sleeping was better. I've got some left and am keeping them for when I really need a night's sleep. Do you take it on a regular basis? I'm in UK and doctors are loathed to prescribe things like codeine long term.

[yorkie24 in reply to soupersuzy]

Like you I realised accidentally that codeine helped with my restless legs. Thirteen years ago I was prescribed co-codomol when I had shingles and slept like a log - the first time in years! Fast forward about 10 years and a neurologist 'allowed' me to take low dosage codeine (15mg) but as I was now augmenting from taking dopamine agonists I was not getting very much relief. A phone call to a GP, at the end of my tether, resulted in him prescribing 30mg tablets to take when I needed them, 4 hours apart, maximum 8 per day. I normally take one at 18.30, two at 22.30 and one at 2.30 (or whatever time I wake during the night). This leaves me plenty of scope to 'top up' at other times of the day/night if I need to. I also take 300mg Gabapentin at 19.30 and 21.30. This routine works for me but, of course, may not work for others - such is the nature of RLS. Good luck!

[soupersuzy in reply to yorkie24]

Thanks for that info. Think I'll have a word with my GP and try to get another prescription for codeine, worth a try as they definitely do help.

[Canterberry]

Yes. The full body jerks. Is what so have also! Right now I take .125 Mir&pex but I want to get off it and in something that is not a DA.

[soupersuzy in reply to Canterberry]

Sorry to hear that Canterberry, I can sympathise. Have you ever had any kind of diagnosis?

[Canterberry]

No, not officially. I am going to see a RLS specialist at the end of July. Praying for some guidance. (Mir&pex does work for me somewhat,).

[soupersuzy in reply to Canterberry]

I'm in UK and as far as I'm aware there's no such thing as an RLS specialist here. I have been to a sleep centre for a sleep study but I think I was a bit of a mystery to them and never got any specific diagnosis. My GP did think it was Myoclonus but who knows. Good luck with your specialist, I hope you get some help.

[RestlessMe]

I do feel for you. I have started getting jerky legs recently and that’s bad enough

[soupersuzy in reply to RestlessMe]

Thank you, I do hope your jerks stay only with your legs. But even that is bad enough when it affects your sleep. Good luck.

[TeddiJ]

I have that, too. It seems completely different than the crawley feeling of RLS, right? I assume that is must be PLMD? But, then again, it could be related to withdrawal from DA's or taking various meds, too. I wish I knew what was up! It's like my hips pull up and and I can feel my midsection seize. When I am sleeping in bed or even soon after getting out of bed.

In the daytime and the evening, I have no symptoms of anything. Or, if I do, it is the classic restlessness/jumpy legs. They seem VERY different.

[soupersuzy in reply to TeddiJ]

Yes that's it and it's just impossible not to have to get up and move around. They do seem so different but RLS is the nearest thing to it as I definitely did start with RLS and it seemed to progress to this. However the result's the same, no sleep.My GP first diagnosed me with Myclonus, but PLMD has been mentioned too.

I don't think anyone knows really.