my rls is back worse than ever

[Ronniebongo]

Not been on here for a while as my rls calmed down abit but last few months it’s back worse than ever , tonight I had one hour sleep and my whole body is all over the place , restless legs arms stomach , I’m up and down at least five times a night ,it’s also worse this time in the mornings so I’m up at 5-6 am as it gets worse .. tonight I’ve had enough .. I’ve had the advice on here about different drugs but have been reluctant, might be time to try now .. I started the iron the last time and it affected my stomach so I stoped but re started it hoping it would help but doesn’t seem to .. pregabalin and gabapentin have been mentioned ? Should I give it a go 😳 I’m 55 possibly in menopause as my severe headaches have decreased.. that’s why I didn’t want to try prescription drugs incase it affected my head ..

[SueJohnson]

Yes. The hrt can make RLS worse. If going off that doesn't help, beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...

[Madlegs1]

What has changed in your life around the onset of these symptoms?

Change in diet or medicine?

Just to illustrate-- I had terrible RLS the other night-- hitting the wall, biting my lips- just awful. Out of the blue.

What had I gone and done?

Oh- just had 6 malteser balls. I can't resist that chocolaty malty taste.

But ,boy, did it come back to bite me.

Raising agents in the crunchy bit.

😭

[Ronniebongo in reply to Madlegs1]

I’m on the highest HRT at he minute due to severe headaches which seem to be subsiding as the years go by so I may try to reduce it from next week , I’m eating really healthily at the minute trying to lose weight, maybe I’m missing some nutrients 🤷🏼‍♀️Mine gets worse if I have something to do the next day , like we’re off for the weekend this morning and my whole body was haywire in the night 🥴arms legs stomach mad dreams …. It’s rubbish when you’re so tired at bed time then wide awake an hour later

[Madlegs1 in reply to Ronniebongo]

Sorry- I missed the bit about hrt - that would do it.!

[SueJohnson]

Your ferritin was so low at 41, you really need to increase it. You should eat iron rich foods and try taking your iron tablets, I assume you are using iron bisglycinate which is easier on the stomach, with food but not milk or coffee and with Lactobacillus plantarum 299v as it also helps its absorption. Taking it with a small amount of food won't be as effective but is better than not taking it at all. Also take a lesser amount of iron, cutting the tablet in 2 if necessary.

Better yet try to get an iron infusion. If your doctor won't prescribe one you can get one privately for around £800. Let us know where you live in the UK and we may be able to tell you where you can get it.

[michou]

Sue Johnson is the expert here - so cannot add more save that I would just say that my GP swopped me from Gabapentin to Pregabalin as was not working so well anymore. I got a headache that lasted 10 days and I never ever get headaches - not major but there so if you suffer from headache maybe go on the Gabapentin instead. It stopped as soon as I got off the Pregabalin. Me I swear by Codeine but that has its side effects - we are all different is the mantra

[joker826]

Sorry to hear about your discomfort. See your doctor and ask about trazadone and gabapenten. Taking this at bedtime for more then 3 years has helped me.