Fluid

[Whymelord]

Hi,I've upped my dose of Pregabalin to 150mgs,in the last few days and already I have swelling in my legs and ankles,am weaning off the small dose of Pramipexole, My RLS is agony,not getting much sleep. Would like to know if this swelling will go or should I speak to my gp again,that's if I can get to speak to a Doctor over the phone.

[SueJohnson]

Edema can be a side effect of pregabalin. I have it. It doesn't really bother me. My doctor was not concerned. Drink plenty of water. It might seem counterintuitive but when your body is not hydrated enough, it holds onto the fluid it already has to make up for the lack of incoming water, thus contributing to swelling. Don’t take diuretics as it makes RLS worse.

[Whymelord in reply to SueJohnson]

Thankyou SueJohnson for your prompt reply, I will take that advice and drink more water.My goodness isn't this a never-ending struggle,with side effects of different meds,changing from one med.to another etc.in the hope we will get ease,I don't get one night without this horrendous affliction.

[SueJohnson in reply to Whymelord]

As a result of Hilsk's comment on another post, let me amend my response. If your doctor feels your edema is bad enough that it needs treatment s/he may prescribe a diuretic but be aware that for most people, diuretics can make RLS worse so discuss this with your doctor.

[Joolsg]

I had oedema on 150mg pregabalin but it reduced after around 3 months.

[Cocosmum]

I found pregablin exacerbated my rls. Still sticking to my regime of iron tablets, pramipexole and cocodamol with (fingers crossed) wonderful results

[Whymelord in reply to Cocosmum]

Hi Cocosmum,thankyou for replying, I can say for sure that Pregabalin does not ease my RLS,I've been on it for a while in the hope that it would help.I have just recently got off the Pramipexole, seems no matter what meds I try do not work.Before I started Pregabalin I was taking the same as you ie,Pramipexole, Cocodamol,also gentle iron,what to do and which meds to take is a task in itself, I'm talking to my gp tomorrow so maybe it's worth discussing stopping the Pregabalin to see if I get ease.

[SueJohnson in reply to Cocosmum]

Pregabalin may not work and may have side effects one can't stand but one thing it does not do is exacerbate one's RLS.

[67Waterman in reply to Cocosmum]

Can you share amounts and timings of each of the medications you mention? Big thanks, Sally

[Cocosmum in reply to 67Waterman]

Hi I take 2 x 24 mg of chelated iron tablets( which I buy from amazon) at 4pm on empty stomach. 2 x 0.088 mg pramipexole at 7pm and 2 x 30/500 cocodamol at 9pm. This works for me but note that the iron is not on prescription.

[nick-the-turk]

Been on pregabalin for about 4 years now with no problems 150mg midday and 300mg at night along with some codeine phosphate not much sleep still but luckily no side effects

[Whymelord in reply to nick-the-turk]

Thankyou nick-the -turk,without a doubt its a fact that what works for some doesn't work for others.good luck

[nick-the-turk in reply to Whymelord]

For sure i wouldn't say its a great medication but from where I was im happy now with the amount of sleep I'm getting which is at best about 3 hours of broken sleep ( an hour here and there ) a night hope you find relief soon

[Beckonwood]

I tried the pregabalin and found that I became very dizzy. Believe this is a possible side effect of the drug so am back on my oxycodon

[williamghenry]

Hello Whymelord Sorry to hear about your problems with Pregabalin

I find that when I take Pregabalin my RLS starts up in minutes

I am writing this at 3:37 am as I cannot sleep and my legs are burning

My GP doesn't know much about RLS so there is not much help there

I have only been taking Pregabalin for about ten days I am prepared to finish the course I am on

I will update you if I find relief or anything else

My Iron Levels are extremely low so I am taking Folic Acid and Ferrous Sulphate and having another Blood Test in about two months

Kind regards

William Henry

[Whymelord in reply to williamghenry]

Hi Williamghenry,thankyou for replying, it's 3.53 am ,I've been awake since 2.30 am,tried to stay in bed hoping the RLS would stop but it did not,sitting downstairs now ,I've taken 2 cocodamol and am drinking some Camomile tea hoping it will ease.gonna ring my gp tomorrow to discuss my meds,one more time,please do let me know if you find anything that will work,I don't think I have had one free night from this awful feeling in a long time.good luck.

[SueJohnson in reply to williamghenry]

One other person on this forum has also complained of burning legs. If this continues you might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Multiply the pregabalin amount by 6 to get the correct dose. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin.

[williamghenry]

Hello Whymelord I am in absolute agony at present I have taken Paracetamol which helps a little bit

I had a major operation in January to remove a Polyp by keyhole surgery and removing part of my bowel and joining it together again

I have moved to sheltered accommodation which I love but my RLS has got worse after the operation and during the recovery period

I wish you all the luck in the world coping with this horrible disease

I have been on Fast Track to visit the Neurology Department at the Hospital since July 2022 Nothing has happened apart from an introductory letter from the department and a sleep awareness course online which helped a bit

Good luck and thank you for sharing your experience

[Whymelord in reply to williamghenry]

Oh Lord,I'm sorry to hear about your operation,I hope and pray you make a full recovery. Seems being fast tracked to any medical department doesn't work anymore.When I'm walking the floor in the wee small hours I'm determined to ring my gp first thing in the morning then when morning comes I think, what's the blooming point,I feel that I know as much and maybe more about RLS than they do it's ike going round in circles.I really wish you a full recovery.