RLS returning after initial success.

[Doghorse]

I have got off ropinirole, using pregablin & increased my iron levels, everything seemed to getting better with little or none RLS but suddenly its returning & not stopping despite me increasing pregablin. Particulary at night. I am desperate not to go back to the constant RLS attacks but apart from increasing pregablin I wonder if its now acting against me.

[Madlegs1]

Pregabalin won't go against you like with augmentation.

However, triggers may be affecting you.

Have you started any new medications or eaten something/ drank something new??

What times are you taking the Pregabalin?

[Doghorse in reply to Madlegs1]

I am taking 250mg, 150mg 8-9pm them another 2, 100mg at midnight as RLS attacks.

[Doghorse in reply to Doghorse]

The regime seemed to be working but is now stopping, I haven't really done anything to change.

[DesertOasis in reply to Doghorse]

Hi there. I think what Madlegs is asking is about ALL non-RLS meds you are on? Especially things like HRT and SSRIs. By chance, did you stop taking the iron? RLS is less about ferritin and more about something called serum iron, which plummets at night, and we get RLS. So you should always take oral iron at night about two hours before bed on an empty stomach. The iron may very well give you a good amount of relief within an hour, as it does me, and many on others on here.

[Doghorse in reply to DesertOasis]

I am taking iron bisglycinate as my iron was low, I am awaiting a test result to see where I am now, I was told to take it morning am with vitamin C to help absorption, I haven't taken it at night. I take blood pressure tablets but nothing else. I will try taking Iron at night as well.

[DesertOasis in reply to Doghorse]

Taking the iron at night should make a nice difference. Read here:

healthunlocked.com/rlsuk/po...

[Doghorse in reply to DesertOasis]

Thanks for you advice.

[SueJohnson in reply to Doghorse]

This is the normal advice: If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice as you are doing since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. If your ferritin is 50 or below take 100 mg. You didn't say what it was.

Take it every other day as more is absorbed that way, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.

Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

[SueJohnson in reply to Doghorse]

what blood pressure medicine are you taking as many can make RLS worse and I can give you some safe ones to discuss with your doctor.

[Doghorse in reply to SueJohnson]

I take Amiodipine 5mg, Ramipril 2.5mg

[Doghorse in reply to Doghorse]

My Iron reading before I coomenced taking Iron suppliment with vitamin c was 78 so really low, but GP told me normal, I haven't accepted that I am taking 112mg Iron in morning, I will now increase in evenings. I neet a bloof test to see my current Iron level as I have been taken it for 3 months

[SueJohnson in reply to Doghorse]

Amlodipine makes RLS worse for some but not all. Ramipril is probably OK.

[Doghorse in reply to SueJohnson]

thanks

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Congratulations for getting off the ropinirole. I know that must not have been easy. How long have you been off it?

Normally you would take the entire 250 mg 1 to 2 hours before bedtime. It takes that long to be fully effective.

I agree with Madlegs. Have you started taking any new medicines or OTC supplements, changed anything you eat, changed your life style in any way?

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

You say you have increased your iron levels. What is your ferritin ?

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

[Doghorse in reply to SueJohnson]

I have put my profile where I live in UK and I am a woman

[Cookiebum24]

Hi this is happening to me too. Came off Pramipexole and have been on Oxynorm and Gabapentin. Both have worked well until the recent weeks and I’m now waking at least twice a night with RLS.

I’ve not started any new meds and my diet is the same as always. The pain the other night was awful and I ended up taking oramorph in the night to then wake up feeling groggy.

I’ve been waiting 4 months to see a neurologist and still haven’t got an appointment!!!

[Doghorse in reply to Cookiebum24]

Serum Ferretin seems to be a vital part in reducing RLS mine was incredibly low & I am hoping the increased attention in this area will show results.

[Cookiebum24 in reply to Doghorse]

My levels are good and I take iron every night.

[Doghorse in reply to Cookiebum24]

Above 200 ug/l ?

[phantom388]

I find RLS cyclic, I can manage it fine for 6 months to a year then it comes back with a vengeance with absolutely no change from my end. Then over a couple of months it starts to wind down again. Never figured why and just do my best to ride it out rather than swap or increase medication - hope it's the same for you

[Doghorse in reply to phantom388]

Better since getting off ropinerole