Restless leg syndrome.

[Ailbat70]

I have had RLS for more than 35 years. At first I was told to take paracetamols, which did nothing for me. Over the years I have had various medications, none of which helped much. I am now on Ropinarole and find it to be relatively successful, having breaks from my Rls lasting a few weeks at a time. I am grateful that I get some relief from sleepless nights, I hope a cure can be found for this distressing condition soon. Can anyone tell me if it is hereditary ? My young sister had it and now my niece has it.

[Joolsg]

Welcome.Primary RLS does tend to run in families.

Have a look at RLS-UK website and, if you're in the USA, rls.org website.

They set out everything you need to know about RLS.

The latest, best treatment is set out in the Mayo Clinic Algorithm.

First line treatment is now iron ( pills or infusion) & replacing trigger meds like anti histamines/anti depressants/ statins, beta blockers and PPI meds.

Pregabalin and gabapentin are the now first line meds if raising serum ferritin ( by iron pills/infusions) & eliminating trigger meds don't help.

You will find that most people on this site have been on either Ropinirole or Pramipexole for many years and are now very anti these drugs because of the very high rate of drug induced worsening of RLS (augmentation).

Can you tell us what meds you have been taking over the past 5 years and the full list of meds you are currently taking, including any OTC meds? Has your GP arranged blood tests recently?

[SueJohnson]

Yes it can be hereditary. If you want to find out if you have the genes for it you can join 23 and Me and then join 23 and Me+, but in your case since you have it in your family, it is obvious you have those genes.

To elaborate on what Joolsg said:

Up to 70% of people will eventually suffer augmentation on ropinirole (or pramipexole) according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.Https://mayoclinicproceedings.org/a... ,

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. Be aware of these and if they occur post back here for some advice on how to come off it.

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice. And improving your ferritin is one of the ways to help avoid or delay augmentation.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, 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, using a standing desk, listening to music, meditation and yoga.

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.

[Svengolly]

Odds of eliminating RLS are pretty good ! …

Studies at John Hopkins have shown 50% of rls sufferers get total relief ,

and another 25% partial relief by raising their Ferritin Level (stored iron) !

I had unbearably horrific rls until i raised my low Ferritin levels.

But note some sufferers have "normal" Ferritin levels and only

benefit when they raise them to HIGH levels.

Sometimes as even as high as 400 to get relief.

There is a small chance a person can have dangerously high iron levels so iron and ferritin blood levels should be tested before piling on Iron .

It took me 8 (horrific !) months taking expensive Heme Iron supplements to raise my Ferritin levels ..

but then i got total relief.

I took one of each of these a day …

amazon.com/Proferrin-ES-Pol...

amazon.com/gp/product/B005C...

Five years later my rls came back strong :(((

& no surprise .. my ferritin test came back low .

I was also anemic.. so i was (thank God & Dr. ) ordered iron infusions, and within 2 weeks my rls evaporated , as well as 30 years of insomnia !!!

This whole nightmare (as well as a dozen gut and other health problems)

were surely caused by my stupid choice to be a vegan/vegetarian .

Two years ago i went on the Carnivore diet

(which fixed my 5 decades of gut & nueroligical issues in months) .

I ate tons of grassfed beef , plus some mega-iron rich beef heart monthly.

Meat iron is way higher & more bio-absorbent than plants ...

needless to say my iron/ferritin levels are 5x higher than my veggy years !

If you fear saturated fat or meat or think it’s unethical like i did …

imo we have been grossly misinformed or worse disinformed .

Watch the movie Fat Fiction … Google MeatRx …

and bear in mind our the mainstay of our evolutionary diet was fatty “grass-fed” animals .

Google eatwild to find local humanely raised grassfed meat

[Eryl]

The thing that makes it seem hereditry is eating habits. High consumption of processed carbs and refined seed oils is most likely to be tbe cause.

[Legquake]

People throw stones at me because I take Ropinirole but I can tell you this: it works. I was prescribed the drug by my primary and two neurologists, one at the Mayo Clinic, and all supported continuing it. Studies tend to change from time to time, the FDA is a joke, and not all are right. For example, oncologists will make chemotherapy the first line of defense against cancer despite many now coming forward to say it kills too many to be considered. Some now warn against taking it altogether and direct people to Europe for a chance to live. You can try Gabapentin if you like but life is too short to go deal with RLS without trying something and everything. I wish you the best.