looking for tips

hi I’m new to this community but I’ve dealt with restless legs for as long as I can remember. I’ve done calcium/magnesium, iron supplements taken with orange juice, stretching, hot baths before bed, mirapex and lyrica. It’s daily and nothing helps. Looking for avenues that I’ve never tried. And yes, light exercise in the evening.

[SueJohnson]

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

Are you still on mirapex? If not when did you stop and how long were you on it?

Same question on lyrica.

Have you had your ferritin checked? What was it?

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

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, 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, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

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.

[Hidden in reply to SueJohnson]

Thanks for the thorough answer.

I’m a 55yr old female from British Columbia, Canada. As well as dealing with rls ( I feel like I have always had it) I have MS. The rls effects me much more than MS ever has.

I was on mirapex 3 years ago and only for 3 months as I augmented immediately. I have been on 150mg of lyrica for 2.5 years and I really don’t feel like it is doing anything.

In addition to lyrica I take Tecfidera for Ms, probiotic (6billion) B12, 3000 D3, ferrous polysaccharide (iron), vit C, magnesium glcinate, calcium. I have tried topical magnesium gel, and do have epsom salt soaks sometimes. Foods I avoid (like the plague) ice cream, late night sugary anything, alcohol, caffeine after 10 am. I never ever take cold medication of any type.

I have had my ferritin checked and it fluctuates between 10-18 even on Iron supplements. I have done iron infusions a few times … with no notable difference.

Exercise- I do yoga every morning and walk my dog 2x a day if my legs are bad in the evening he’ll get a short walk and hat tends to help a lot

There are a few other things you mentioned in your answer that I will look into.

[SueJohnson in reply to Hidden]

150 mg of Lyrica is a low dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 300 to 400 mg." I would request 25 mg tablets and increase by that amount every couple of days until you find the dose that works for you. You can take up to 600 mg.

Your medicines are fine.

I'm amazed the iron infusions didn't bring up your ferritin which is extremely low. On your iron supplement are you taking it with 100 mg of vitamin C or some orange juice since that helps its absorption. and taking it every other day , not every day, 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. Since you take magnesium and calcium or if you take a multivitamin with zinc or them in it, take them at least 2 hours apart since they interfere with the absorption of iron. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. It takes several months or more for the iron tablets to slowly raise your ferritin. Ask for a new blood test after after 3 months to check your progress.

[CalmRestPeace in reply to SueJohnson]

You really shouldn't be giving people advice on medications. Especially horrible drugs that were not designed to combat restless legs.

Possible side effects (from Cleveland Clinic)

What side effects may I notice from receiving this medication?

Allergic reactions or angioedema—skin rash, itching, hives, swelling of the face, eyes, lips, tongue, arms, or legs, trouble swallowing or breathing

Blurry vision

Thoughts of suicide or self-harm, worsening mood, feelings of depression

Trouble breathing

Side effects that usually do not require medical attention (report to your care team if they continue or are bothersome):

Dizziness

Drowsiness

Dry mouth

Nausea

Swelling of the ankles, feet, hands

Vomiting

Weight gain

This list may not describe all possible side effects.

[Elisse3 in reply to CalmRestPeace]

All medications can have side effects and not everyone gets them Sue has quoted from the Mayo Clinic on the dosage the Mayo Clinic has the latest up to date information on RLS. Sue has said nothing wrong and is one of the knowledgeable and experienced members on this forum.

[CalmRestPeace in reply to Elisse3]

What she did was very wrong. Unconscionable.

[nocturne in reply to CalmRestPeace]

We help each other on this forum based on information we glean from the latest medical research as well as from our own lived experiences. I, for one, am grateful for all the information I find here. Not everything I read here is applicable to me, but I use my own judgment to decide what to consider and what to ignore. If you find this free exchange of information and knowledge (which eeven many physicians woefully lack), "unconscionable," this is clearly not the right forum for you.

[CalmRestPeace in reply to nocturne]

Members of this forum should not be recommending to anyone that they should increase their dosage. I don't care what they read.

Let's examine what's going on here:

1. Drugs used to mask the symptoms of RLS were originally created to combat Parkinson's disease.

2. The doctors prescribing these drugs don't have a clue what the cause of RLS is. They are totally in the dark.

3. The drugs often have terrible side effects.

4. Augmentation can occur, making things worse.

So, a person joins this forum looking for help, and your idea of help is to jump in and say that he/she should take more of these drugs.

To summarize, your plan is to get rid of the guy that no longer has restless legs, while recommending that new members take a higher dosage of the drugs that 90% of the community is complaining about.

[nocturne in reply to CalmRestPeace]

It's clear from your posts that you're utterly unfamiliar with what's discussed in this forum. Please take some time and read the threads before getting on your soap box. Also, if you're "the guy that no longer has restless legs," why are you even here? Surely, you must have better things to do.

[CalmRestPeace in reply to nocturne]

Soapbox, good one. Irony.

Anyway, yes I've read a lot of the posts. It pains me to see so many people suffering.

I joined to learn, and that's what I'm doing.

[SueJohnson in reply to CalmRestPeace]

And in the process Pianomama has left the forum.

[Lynnygrl in reply to CalmRestPeace]

I agree with you totally!!!!!!!!

[SueJohnson in reply to Lynnygrl]

Just curious - who were you agreeing with totally? As your other posts would make me think it is not CalmRestPeace.

[Elisse3 in reply to CalmRestPeace]

No one is recommending increasing ANY dose of a Parkinsons meds. All the DA’s are not even recommended to take and are discouraged from taking them. Sue and other members spend time advising how to get off of them. The poster Sue was trying to help has now left the forum 🙁

[Elisse3 in reply to CalmRestPeace]

No it’s not. This forum works well giving help and support to those who asking for advice. All the advice is up to date. If you don’t like it then maybe find a forum that fits you better.

[Munroist in reply to CalmRestPeace]

On this forum members share what has helped them, often in the face of out of date and incorrect treatment from the medical profession. There are very few options for people with restless legs and while the side effects of the medications can be unwelcome they may be acceptable compared to the distress and harm of not sleeping. Some people do indeed find the side effects too much and consequently reduce dosage or stop taking drugs. Unfortunately it’s difficult to predict both the efficacy of a drug and how bad the side effects will be. I have taken pregabalin with relatively little side effect and if it had managed my RLS more successfully I would probably still be on it. One size does not fit all. Most people offering advice take trouble to establish what a person is currently taking and are aware of contra indications and there are many respondents who cross check each others advice. You are welcome to post your own experience and thoughts and other members will decide whether they are useful to them.

[Hidden]

my ferritin level went up to 120 after 3 rounds of infusions but just went right back down again. ( I’ve tried 3 separate times)

Interesting about iron every 2nd day. I take it in the evening with vit C as it is hard to time it properly otherwise.

Thanks for all your tips

[SueJohnson in reply to Hidden]

That is strange that your ferritin drops so quickly after your iron infusions.

One absorbs more iron in alternate day iron than taking it every day. Https://thelancet.com/journals/lanh...

[Amrob]

Hi and welcome. Your dose of pregabalin (Lyrica) is rather low. I too would suggest increasing it very slowly to find the dose that works for you. Just take care as the higher the dose, the greater the side effects. That's why you don't want to go any higher than you need to. I have taken pregabalin for nearly 10 years (between 150 and 300mg).

[Hidden in reply to Amrob]

Thanks

[Kaarina Administrator]

Welcome to the forum Pianomama. We hope you find the information helpful from SueJohnson and Amrob and we hope to hear more from you again soon. It may be best to start another thread as this one has got rather busy with members replying to each other and not directly to you.

[SurvivorD]

Lastly.......... your diet!!! I know for me sugar, alcohol, processed food and too many carbohydrates are "poison" for my RL. Keep a food diary.