RLS and HRT

[Ronniebongo]

I’ve always suffered mild rls in the evenings but some leg lifts and going to sleep stopped it , last few months it’s severe , I was up every half hour all last night walking the floors with restless legs , arms and stomach , my mind going haywire 🥴I think it could be linked to HRT and menopause but doctors have not seen a link before 🤷🏼‍♀️Any one having anything similar ? I’ve tried most non medical solutions and am reluctant to go on meds as I’ve just got my migraine and headaches under control ….

[Madlegs1]

There doesn't seem to be a clear scientific relation between HRT and RLS. One very small research report.

However there is clear support for it in anecdotal evidence.

There are many blogs giving advice on nutrition and stuff for helping

A quick internet search will throw these up and you may choose whichever pitch you find attractive.

Hopefully you will find something that helps.

Have you had your iron levels checked and keep a food diary to check for triggers.

All the best.

[SueJohnson]

HRT contains estrogen and it is well known that it can make RLS worse in most people.

[SueJohnson]

When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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 ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels you need it. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 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. 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 of gabapentin and pregabalin 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) daily." 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 uptodate on it at Https://mayoclinicproceedings.org/a...

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.

[Ronniebongo in reply to SueJohnson]

I bought a leg massage compression gadget , put them on when my rls was bad the other night and it irritated it more ! My legs were jumping all over the bed and the horrible sensation going up into my stomach 🤦🏻‍♀️

[Birdland]

My experience was same as yours. I had mild RLS most of my life. Nothing chronic. I went on HRT and my RLS went through the roof. Constant horrible RLS. This was almost 20 years ago. I knew nothing of triggers. I made a crucial mistake, I stayed on the HRT and began taking Ropinirole. I, as well as my doctor, was clueless about dopamine agonists and the havoc they can create. Unfortunately after 16 years on Ropinirole, with major augmentation, I finally got informed and stopped HRT and came off of Ropinerole. My RLS never went back to mild probably due to dopamine receptor damage from all those years on a very high dose of Ropinirole. So I would hate to see you have to go down the route of taking meds for RLS when stopping HRT would do the trick. Not easy though. I sure would like to go back on HRT. But having RLS makes that impossible for me.

[Jukebox55]

i have just convinced my gp to try me on HRT. I had a relatively early menopause at 47 and back then, HRT had a very bad cancer reputation. So in my 30 plus years of insomnia and RLS, never considered it. When i looked at the symptoms of post menopause, i had loads inc insomnia. I have come off DAs, over six months, plus crucial iron therapy, and dont tell anyone, but i think my legs have finally stopped giving me hell! I couldn’t get on with pregabalin- worse symptoms than RLS, So talked the GP into giving me oxicodone 10 mg and after three weeks, i am starting to sleep again!!! Amazing!!! So dont give up! Good luck, Ronniebongo!!

[Typicallygaslit]

Yes, I believe HRT has made it worse for me. Things really got out of hand when I went on it and I’m currently trying to adjust the dosage and see if I can find a compromise with a reasonably low dose HRT. Coming off it altogether isn’t great from other points of view and didn’t cure the RLS so didn’t seem like a good solution either.

[Ronniebongo in reply to Typicallygaslit]

Thanks for all the replys ! I am away camping in a field in my bongo with Ronnie ⛺️🐕😬 I didn’t have one second of rls last night 😵‍💫🤔I know if I have something to do or on my mind my rls is ten times worse even though I’m not stressed or worrying about doing it , I was up most of the night with horrendous rls the night before going away .. maybe I need to go live off grid 🥴I don’t eat meat or drink caffeine , I’ve had my bloods done came back at 41 ? I take iron and magnesium supplements now so we’ll see 🤞🤷🏼‍♀️Doctor said iron was slightly low

[SueJohnson in reply to Ronniebongo]

If you are saying your ferritin is 41 as opposed to your iron, take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other 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. 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 or at least take it in the morning if you take your iron at night. 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. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Ask for a new blood test after 3 months.

[Ronniebongo in reply to SueJohnson]

Thanks Sue , some helpful tips .. I am taking my magnesium and iron at the same time so I’ll separate them ..

[Ronniebongo in reply to Ronniebongo]

Hi all .. so I’ve reduced my HRT from 100 to 75 evoral patch and started changing it in the mornings instead of evening , been taking iron and magnesium for maybe couple of weeks now (I started the ones Sue recommend in previous message ).I’m not a big user of my phone anyway but I don’t look at it after 8pm and try not to watch tv either after 8pm,I haven’t had rls for 6 nights now ! I still wake in the night about 3 times and get out of bed probably expecting rls but I go back to sleep almost straight as away .. not sure what has helped but I’ve gone from horrendous rls for 8 hours a night to practically none at all ! 🤞Been trying also to keep my mind calm and as un stimulated as possible in the evenings .. who knows but it’s helping .. hope these simple tips may help .. 🙏