Help please : Hey I need some help I've... - Restless Legs Syn...

Restless Legs Syndrome

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Help please

Rangers52 profile image
29 Replies

Hey I need some help I've been on pregabalin for 6 months now 225mg my rls was under control until a week ago it's back with vengeance has anyone else experienced this?

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Rangers52 profile image
Rangers52
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29 Replies
Madlegs1 profile image
Madlegs1

Sounds like something has triggered it.

Have you taken any new medication?

Splurge on a night out? Drink, gravy etc??

Rangers52 profile image
Rangers52 in reply to Madlegs1

No there's nothing obvious that I can think of

Rangers52 profile image
Rangers52 in reply to Rangers52

I've been drinking skinny syrups in my coffee instead of sugar for about 3 wks now 🤔

Madlegs1 profile image
Madlegs1 in reply to Rangers52

What are the ingredients in those syrups.?

The timing sound right!??

Rangers52 profile image
Rangers52 in reply to Madlegs1

Lactic acid,sweetener,acesultame potassium,sodium benzoate,potassium sorbate,cellulose gum

Amrob profile image
Amrob in reply to Rangers52

Artificial sweeteners cause inflammation and some increase levels of glutamate (leading to increased limb movement). In my opinion they should be banned as many people erroneously believe they're healthier than sugar. Try cutting it out and see what happens.

Madlegs1 profile image
Madlegs1 in reply to Amrob

Got there before me👍

Rangers52 profile image
Rangers52 in reply to Amrob

I will do thank you 😊

Rangers52 profile image
Rangers52 in reply to Madlegs1

I'm just wondering do you think spacing out the pregabalin a bit would help? I usually take 1 tablet at 5pm then 2 at 9pm my bedtime is around 11pm

Madlegs1 profile image
Madlegs1 in reply to Rangers52

See Sue's replies.

Deesee profile image
Deesee in reply to Rangers52

I take 400 mg at 7:00 p.m. Dr. Winkelman told me my Pregabalin doesn’t need to be spaced out. I go to bed around 11:00, sometimes later. If you don’t need anything earlier, try taking your 225 mg at seven. Good luck.

Rangers52 profile image
Rangers52 in reply to Deesee

Thank you I will try that

Amrob profile image
Amrob

I find that my RLS /PLMD really fluctuates. Sometimes it's a case of riding out the storm. I am on 250mg pregabalin these days. I have noticed that a clean diet and moderate exercise noticeably reduce RLS symptoms.

Bumble34 profile image
Bumble34

Hi, I restarted Pregabalin last November after a break of a few Months having in the past had some success until tolerance, this time around absolutely no effect good or bad right up to the max dose 300mg that my GP would allow so I`m slowly coming back down 25mg fortnightly. I`m not sure what plan B, C or D is but I`ll have to think of something. The truth is as is often said we are all different and there is no Golden Pathway.

Rangers52 profile image
Rangers52 in reply to Bumble34

I really hope you find something that works, im really worried that the pregabalin has stopped working for me because I've no idea what to try next

SueJohnson profile image
SueJohnson in reply to Bumble34

Did you give it the 3 weeks it takes to have full effect? Have you tried a low dose opioid like buprenorphine?

Bumble34 profile image
Bumble34 in reply to SueJohnson

Hi Sue, Do you mean three weeks at 300mg? as for an Opioid, wishful thinking with my Gp at the mo, but I`m getting desperate so might have to have another go at him.

SueJohnson profile image
SueJohnson in reply to Bumble34

I meant 3 weeks since you started taking it.

UpsideDownInsideOut profile image
UpsideDownInsideOut in reply to Bumble34

Sorry if I’m hijacking but I wanted to say my GP gives me 600mg pregablin for my rls but the prescription is 150mg morning, 150mg lunchtime and 300mg at night. He said he couldn’t prescribe that amount for rls so he’s giving it to me off label for anxiety and I take all 3 pills together at night. Touch wood so far it’s working really well.

Bumble34 profile image
Bumble34 in reply to UpsideDownInsideOut

Thank you.

Rangers52 profile image
Rangers52 in reply to UpsideDownInsideOut

That seems like a hell of a lot

UpsideDownInsideOut profile image
UpsideDownInsideOut in reply to Rangers52

I know but it works for me.

Nikos64 profile image
Nikos64

I am on both oxycodone and gabapentin and I still have good and bad nights.

Honestly, I have not been able to identify why this is the case. Even my sleep specialist warned me of this. The brain is a complicated machine.

Here’s some things I empirically found that help me:

1. Eat healthy nutritious food with lots of fruit and fibers. Avoid sugar! Take a complete multivitamin daily ! Minimize salt and

2. Be consistent with your sleep schedule! Go to sleep and wake up at the same times every day we much as possible.

3. Absolutely no caffeine ! It’s not just in coffee! Also, alcohol is not your friend if you have RLS. Gotta minimize that

4. Do mild exercise every day and wind down in the evening! This requires consistency too! If you exercise too intensely you will not have a good night.

5. I’m not a fan of pregabalin. Caused me to have poor sleep quality, weight gain and excessive sleepiness during the day which itself exacerbated the RLS for me.

Good luck and hope you find restful sleep!

Dotmowatee profile image
Dotmowatee

Talk to your GP about a low dose opioid, Targinact is licensed for rls, works for me.

joker826 profile image
joker826

You need to see a neurologist for help.

Madlegs1 profile image
Madlegs1 in reply to joker826

If you can find a knowledgeable one!!🤔

joker826 profile image
joker826 in reply to Madlegs1

When you call the neurologist, ask if the treat RLS.

Bantamdyno profile image
Bantamdyno

Hi, when you say it's come back what's your symptoms🤔

Rangers52 profile image
Rangers52 in reply to Bantamdyno

20 minutes after I go to bed I get an incredible urge to move my legs and arms a horrible crawling feeling

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