HRT and RLS/PLMD experiences?

[HappyGreenBean]

I'd like to call on the community to talk about experiences with HRT and RLS/PLMD. I know some of you have very strong feelings about HRT - but I'd like to hear from you if you personally have:

1+ use/used HRT and found it made your RLS/PLMD worse, better, no change?

2+ found that Estrogen made your RLS/PLMD worse or Progesterone/Progestins? Perhaps it was testosterone?

3+ did you change the type of HRT you were on which eventually helped? Or did you give up on HRT altogether because of the RLS/PLMD?

Currently using topical estrogen and vaginal progesterone to avoid the liver and hopefully avoid negative symptoms of progesterone sensitivity. I'm hopeful I can find a way to continue to take HRT without the worsening of my RLS/PLMD.

Would really love to hear from others about personal experiences.

EDIT: I want to add how thankful I am for each of you sharing your experiences with me. It's very clear that we're all different but also that research is woefully lacking this area.

[Joolsg]

I had RLS and was prescribed DAs BEFORE I was diagnosed as peri menopausal and given equine HRT.I was on HRT for 15 years.

It didn't have much effect on my RLS at first. However, when augmentation hit in around 2011, I did notice that when I was taking the progesterone cycle of HRT, my RLS would play up for around 4 days.

I stopped Ropinirole in August 2016 and stopped HRT in October 2017 as they stopped my brand. My RLS wasn't particularly worse between 2016 and 2017 and stopping HRT in 2017 didn't improve my RLS.

So, in conclusion, I would say that progesterone DID trigger a worsening of RLS for around 4 days each month.

[Greenseagirl]

I’ve found that my RLS worsens every time I change my oestrogen dose (whether up or down) but then settles again. I tried coming off hrt altogether to see if my RLS would improve but it didn’t. After 6 months I went back onto HRT but increased my dose very slowly - I’d get one night of worse legs & then it’d settle. Be interested to hear others experiences too.

[HappyGreenBean in reply to Greenseagirl]

Thanks for sharing this. My experience so far is somewhat similar. If I tinker the RLS gets worse. I'm holding on for now because I can also feel the benefits of HRT outside of the RLS. I do everything else possible to keep it under control.

[Greenseagirl]

I’ve found that my RLS worsens every time I change my oestrogen dose (whether up or down) but then settles again. I tried coming off hrt altogether to see if my RLS would improve but it didn’t. After 6 months I went back onto HRT but increased my dose very slowly - I’d get one night of worse legs & then it’d settle. Be interested to hear others experiences too.

[LotteM]

I started HRT (initially estrogen only in addition to my then Mirena which has some progesteron) which helped enormously for the hot flushes, extremely stiff and painful legs and need for repeated nighttime squat session, which I now know were to ease RLS.

RLS returned in full force a few years later. A while into my RLS I reduced and stopped the HRT. Soon after I started oxycontin and the hot flushes returned further worsening my nights. Opioids do reduce gonadal hormones, although it has been researched mainly in men (of course 🤨). Since, I have been on HRT (estrogen/progesterone combined continuously), and have tried twice for some 3-6 months to do without. The hot flushes/ sweats return/intensify during stop times, worsening my sleep importantly. Hence I still take HRT. Fortunately knowledge on its use has grown and HRT is now thought relatively safe when not overweight or having a heart condition.

I am on buprenorphine 5mcg/h 7 d patches and have only RLS when I have been overactive (physically and/or mentally/socially).

[HappyGreenBean in reply to LotteM]

I'm so sorry you've had this up and down. I understand. It sounds like Greenseagirl has also experienced this, as have I. I'm on both continuously. And, have found that's been more helpful than the fluctuation of hormones. Thanks for sharing this with me.

[LotteM in reply to HappyGreenBean]

The up and down was not at all due to the HRT, but due to my go who wanted me off it.

[HappyGreenBean in reply to LotteM]

I understand. We're certainly not helped in many ways by the Drs charges with helping us! Think most of have experienced this with RLS treatment alone.

[Frustrated-RLS]

I am peri but have not tried HRT for fear it will worsen RLS (which has been flaring up quite a lot because peri can also worsen RLS). Dr Jen Gunter has written that gabapentin, which I take for RLS, helps with hot flushes and I believe this to be true because I don’t struggle with those.

[HappyGreenBean in reply to Frustrated-RLS]

Some of us can't take gaba sadly. I had exactly the same fear and on one hand that's rung true on the other I've found some benefits to the HRT outside of the RLS. This is what makes it so frustrating. But any playing around with doses causes a flair, pretty immediately.

[Guitarpickin]

I don’t have experience with HRT but wanted to chime in to say that the liver still has to process things applied topically. We ask a lot of that organ. lol PS your user name is adorable!

[HappyGreenBean in reply to Guitarpickin]

Ha, thanks re user name!

[Ticki]

I have been taking hormone replacement therapy for eight years now and it does not affect my restless leg thank goodness. I Have severe RLS and I take Buprenorphine.❤️‍🩹

[HappyGreenBean in reply to Ticki]

Thanks Ticki, this is good to know. I'm happy you're happy! Thanks for sharing.

[Birdland]

I have had RLS to some degree since I was a child. I’m 71 now. I experienced mild symptoms on occasion, especially when I had coffee. For that reason I never became a coffee drinker. Fast forward, when I was about 50 I started HRT and my RLS became constant and severe almost immediately. Day and night. I was very uninformed about triggers at the time and didn’t want to believe the HRT could be causing this. HRT was changing my life positively in other ways. After doing my best to endure these much increased symptoms for some time I saw a television commercial advertising Requip (ropinirole) to treat RLS. I asked my doctor to prescribe it. One of the worst mistakes of my life. Lead me down a very long dark rabbit hole for the next 16 years. But that’s another story. I was taking estrogen and testosterone regularly from the start so I don’t know which was causing more of an issue. When I added progesterone during part of the month my RLS didn’t change. Looking back, I feel I sold my soul to the devil by wanting so badly to stay on HRT. Of course if I was as informed then as I am now, I never would have continued with the HRT. Do I wish I could go back on HRT? Absolutely! Unfortunately not in the cards for me.

[HappyGreenBean in reply to Birdland]

Birdland I'm so sorry, you've been through so much. It's not your fault. Our bodies do what they do and we all try to do our best to help ourselves with the guidance of medical professionals. You were poorly treated and it's just not right. I'm glad you're here to share with me your experience and to help myself and others. Your contribution is appreciated.

HRT can be very tough for some, you're not alone in that. But I understand the frustration and concerns.

I hope you're doing better now with the RLS?

[BocaMom]

For me it seems directly correlated to testosterone. Anytime my testosterone has been on the higher side (for a female) my RLS is way worse. I did pellets for a year (wouldn’t recommend) and that’s the exact same time I started seeing a neurologist for RLS. That said, I seem to tolerate the estradiol patch and progesterone capsules, thankfully. I don’t sleep at all without hormones. It’s horrible.

[HappyGreenBean]

That's interesting. Testosterone is an 'excitatory' hormone so I wonder if that's what was happening for you. Only if you're comfortable sharing, no pressure from me, why would you not recommend the pellets? Specifically because of the RLS or for other reasons? I know I'm not fond of the vaginal insertions of HRT. I'm a simple person and this is an added layer to my bedtime routine I'm frustrated with adding -- or perhaps I'm just lazy! ha.

It's great that you're okay with just the progesterone and estradiol though. Thanks for sharing your experiences, appreciated.