How strange my doctors have put me on HRT to help with my server RLS, I've had it for 4 years which is when I was in peri I'm now post, my rls is so bad I'm on ropinirole and it can start from mid day, I actually do sleep as the med knock me out it's the day time I struggle. Cannot sit it's horrendous, been on hrt and it's helped a wee bit, knocked my pills down from 8 to 6 sometimes 5 a day. Now gone upto q pumps of gel to see if that helps due to drop in estrogen levels it can kick rls off, funny how mine started on my menpause journey. I also now have muscle spasms which could be links or just another wonderful thing to add to my rls. I want to try some vitamin, so advise on what to take, iorn, magnesium etc? How much How strong, also if your iorn is normal can we rls people demand an iorn infusion?
Rls and Hrt: How strange my doctors... - Restless Legs Syn...
Rls and Hrt
MikkiWhat you are describing is classic augmentation. Ropinirole is miraculous for the first year. But then it starts to worsen the disease by up regulating your D1 receptors.
The muscle 'spasms' are leg jerks caused by Ropinirole worsening your symptoms. The RLS becomes more severe, starts earlier in the day and moves to hands/arms/back.
The ONLY solution is to get off Ropinirole.
Here's all the information you need on RLS-UK WEBSITE.
Read everything. Your GP knows nothing. Otherwise he'd realise the Ropinirole is the problem.
So get full iron panel blood tests asap and raise serum ferritin above 200ųg ideally via pills/infusions.
The withdrawal schedule sets out how you get off Ropinirole and the Iron therapy sets out how to raise brain iron.
Start pregabalin or gabapentin around 4 weeks before your last dose of Ropinirole.
And report drug-induced worsening to the UK Yellow Card Scheme so doctors will stop prescribing these dangerous drugs.
Did your GP warn you about the very high rates of Impulse Control Disorder (ICD) on dopamine agonists?
You know what I did think of this but the neurological doctor I am under it's rubbish just kept increasing my dose everytime. I have managed to decrease it but I've got to be honest I cannot go one day without it or I would be in torture mode it's the worse feeling ever and I could easy chop my legs off sometimes. My docfinnaly listened to me yesterday and is trying new things etc hrt, so how do I get off them 
without me going cray cray. Infusion and these other meds so scared. Will these not cause arumentation and why the hell is the neurologist just increasing my dose. Honestly I thought I jad Asl last year with the spasms had test all clear but no one is getting g to the root of it all. Feel helpless
Increasing your dose when you show signs of augmentation is medical negligence and breach of duty.I'll message you about taking legal advice.
Would you also mind sending me info about taking legal advice? My sleep doctor continued to increase my dose with signs of augmentation. My symptoms went from evening and occasional day time, to 24 hours a day Thank you
Sadly, as you are in Australia- the advice will be different.This is a UK website, run by RLS-UK and the legal advice is based on UK law and the legal firm that wants to bring a case is based in the UK.
However, Australian law is based on UK law (although there are significant differences) so do visit a local medical negligence law firm.
Tell them that in the UK there have been hundreds of successful cases against UK GPs and neurologists for failure to warn about ICD and NOW a UK firm wants to bring a test case against a doctor for failure to warn/recognise/treat augmentation.
Find a law firm that acts on a No win No fee basis.
Good luck.
What is ICD and no my doctors have no idea what to do with me and the neurological doctor just fobs me off on emails 😒
As you have also posted on the British Liver forum I assume that you're in the UK: as Sue says, it would be good if you could complete your Profile as she suggests.
ICD = Impulse Control Disorders: shopping, eating, gambling etc, which can be triggered by dopamine agonists.
While NICE/NHS are out-of-date regarding RLS, your doctors should be aware of the following on NICE and have warned you:
cks.nice.org.uk/topics/rest...
Your doctors should also be aware of augmentation:
cks.nice.org.uk/topics/rest...
Follow advice from Sue and Jools, as very few UK doctors or neurologists know anything about RLS (and in many case don't really care, considering RLS as a minor inconvenience rather than a major issue for many)
Read everything on RLS-UK for further info, particularly the Understanding RLS menu:
Impulse Control Disorder. Gambling, impulse spending, overeating, hypersexuality. Loads of legal cases against UK doctors for failure to warn about this very common side effect.Where are you and who is your current neurologist?
We may be able to direct you to a doctor that has bothered to read the latest research and treatments.
Lancashire I'm am preston hospital
See Dr Christopher Murphy Consultant Neurologist at Manchester privately. He does phone or zoom appointments . He charges around £250. However don't let him prescribe the Neupro patch (rotigotine) as it is another DA.
Found all his details and going to see if I can go private for a consultation as I need to get off these meds asap and need help advise and what to go on etc amd them tell my doctor so I have a plan. I think you are all completely right my neurologist have been really bad by not listening to me and just increasing my dose. You know I emailed his secretary 6 month ago as I started last March with muscle twitching, started in my legs and had moved all over my body to the point where I thought I had MND or MS his response was you do t have any off these you have anxiety and saw I was prescribed flouxine which I had just been due to a stressful time however he never saw me never did tests and told.me it will calm down. I emailed several times afterwards and told him my rls was very bad, he eventually called me after a 4 month wait to say here's another pill that will help with the spasms and we will send u for a nerve test. The twitching has calmed down a bit bit I have decreased the ropinirole slightly myself after going on HRT. Anyone ever have muscle spasms where u can see the muscle moving. I honestly believe it's the ropinirole nowadays it's not as severe with a slightly reduced dose. I was taking 8 0.25 a day now down to 5 or 6 so if I get off it completely they should disappear He's really done me over hasn't he and best thing is he never replied to me for 4 weeks in my desperate email I said my rls was so bad I wanted to throw myself off a bridge. I think he thought stupid woman in menopause and has anxiety. How did he k ow I wasn't being serious.
Thank you to everyone for all your advise and support
Who is the doctor that prescribed ropinirole and thought HRT would help?
Impulse Control Disorder..Which may manifest as the following.
.Over eating or impulsive eating
.Hyper-sexuality - online dating & meeting people you know little about when normally cautious, or not having 'protection',
.Over spending - buying online excessively, gambling, being unable to budget, investing without doing due diligence
.'Throwing 'caution to the wind'.
In short making impulsive decisions when you normally wouldn't do so, or have had no previous history of doing so.
What a stupid doctor. HRT makes RLS worse! You need to wean off the HRT slowly.
As Joolsg said you are suffering augmentation and need to com e off the ropinirole. You say you knocked your pills down from 8 to 6 sometimes 5 a day. I assume you are talking about ropinirole. Is that true? How many mg in a pill? Reducing that fast is part of the reason you are suffering.
Go back up to what controls your RLS and let the symptoms settle for a few days. But don't be tempted to stay there as you are probably taking over the maximum of 4 mg.
Ropinirole, pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.
First off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole (pramipexole) because the slow releases ones can't be cut if needed.
To come off ropinirole , reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks.
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 1-2 hours before bedtime as the peak plasma level is 2 hours. 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 divide the doses on pregabalin)
Most of the side effects 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 of pregabalin)."
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).
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 ask your doctor 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist 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(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
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 any other health conditions you have.
Hi, apologies for jumping on this thread but could you explain why HRT makes restless legs worse? Thanks so much.
It contains estrogen and estrogen is known to make RLS worse which is why for many people they first get RLS during pregnancy and it often goes away after pregnancy although may then appear when they get older.
Estrogen is thought to interact with the dopamine system in the brain
It didn’t make my RLS any worse or better so for anyone who wants to try it for their menopause issues I would encourage them to trial it still
It hasn’t made any difference to mine either.
It didn’t make my RLS worse either, actually it helped quite a bit. There is only evidence that estrogen on its own can -but doesn’t have to/always- make RLS worse. In combination with progesteron there is no (scientific) evidence of worsening. Enough evidence to give it a try, especially the estrogen-progesteron combi. And monitor for yourself how your RLS behaves. Note: the HRT takes some 2 weeks to build up to an effective level. As per my own repeated experience and back-up-ed by my menopause top specialist-gynaecologist .
HRT hasn’t seemed to impact my RLS or PLMS either. And I am definitely sleeping better on HRT (though I still require gabapentin+THC for the PLMS symptoms, despite the general sleeping improvements with HRT).
I’ve also not found HRT to worsen my RLS.
Many women (including myself) had RLS kick off big time when perimenopause hit so I think there must be a hormonal link. But estrogen is low in perimenopause and menopause yet it’s high in pregnancy so that’s weird too.
My first experience with rls was during pregnancy at 37 years old! I did not recognize it as rls then and believe it kicked off with doctor-prescribed Benadryl for sleep. Whew.
My God I have learnt so much in one message. Honestly the doctors have no idea they are clueless. I started to reduce the ropinale myself after the spams started I actually take upto 2mg a day and I think it's slow release as when I take it after on set symptoms it takes about 1.5 to 2 hours to kick in so I have managed to graduate it over weeks from 8 0.25 pills to 5 or 6 0.25mg pills so it's better than it was. My problems are it can start from midday now so I'm popping pills over the day rather than at night, I sleep well unbelievable but I think that's the pills as they make me sleepy. It's the day time mainly tea time when I sit down then he'll breaks loss and I pace until the ropinale kicks in. The spams started last April, after been on ropinale for about 2 years. No one has even said these could be the issue he's just updated my dose. Got a blood test money so will see what that brings. And read throguh all this to bring to my doc appoiment and see what the hell they can do for me before either jump off a cliff
As we've advised- your doctor is the problem. So do read RLS-UK website and follow the withdrawal schedule and the Iron therapy advice.And change neurologist. This one will cause you further unbearable, unnecessary suffering.
Until you get off ALL dopaminergic drugs, you will never be able to sit still in the day.
Thank you I've read the link you send and it sounds unbearable the withdrawal but I need to try and then get on gabapentin is this as affective? Will it stop the rls as good? I wonder why he never prescribed me this before and when straight to ropinirole. From my last conversation he said nothing compared and then prescribed me baclfen 2 x 10 mg a day to help with the spasms when I asked for an alternative to ropinirole he then prescribed me 0.5 of clonazepen at night which I never tried as he never spoke to me never advised to ween off ropinirole amd never acknowledged that I cannot wait until night to take pills to relive my symptoms.
Withdrawal is hell.But- you will be so glad you did it. The unbearable, severe daytime RLS disappears and the leg jerks.
Raising your brain iron BEFORE starting you on Ropinirole might have completely resolved the RLS. The benefits of Iron infusions for RLS have been known since 1953!!! 70 years ago. But knowledge has been lost & gone backwards.
Gabapentin and pregabalin work verh well for many people BUT years in Ropinirole can permanently damage dopamine Receptors and cause iron infusions and gabapentinoids to fail.
They failed for me.
But I pushed for low dose buprenorphine and after an initial argument with my neurologist, I eventually got it from my GP.
I have zero RLS night or day.
So there are better solutions and treatments.
Stand your ground. Read and learn all you can. The more you learn- the better you will be treated.
Your neurologist clearly knows very little.
Read all you can.
A private appointment with Dr Chris Murphy in Salford is probably your best bet at getting the correct treatment.
The good news is that Buprenorphine pills are green listed in Lancaster area formulary- So if Dr Chris Murphy recommends it, your GP should have no reason to object to prescribing it.
lancashireandsouthcumbriafo...
Thank you would an iron infusion be OK to have now even though my iorn levels are showing within thr normal range? I will definitely contact this doctor thank u so very much for all yiur help and advise. What tablets do you take and the dose?
Your serum ferritin will NOT be in 'normal levels' for RLS.I'll bet your serum ferritin is below 100ųg!
Look at the figures and post on here.
You can send your iron panel results to Dr Chris Murphy and he will arrange an iron infusion. But it may not help. 60% show improvement. But taking dopamine agonists can affect this.
I take Buprenorphine sub lingual pills. 0.2mg at 9pm and 0.2 mg at midnight.
Average dose for UK patients is lower than US patients because we can start on 0.2mg whereas US lowest dose is 2mg pills. The UK average is 0.4 -0.8mg.
careopinion.org.uk/services...
You may want to read these reviews of Preston Hospital Neurology.
Not good.
You can tell if it is slow release by looking to see if the pills have ER or XL after them.
If you see Dr Murphy do not let him prescribe the Neupro (rotigotine) patch as it is just another DA like ropinirole. Otherwise he is very good.
To be fair I saw a doc yesterday and she's going to get me referred to another neurological doctor as I said I want happy unfortunately doctors don't have a clue what to do with us rls people
Ask to be referred to Dr Murphy as there are very few neurologists that know much about RLS.
Hello Mikki01, almost all of us on this forum have suffered from augmentation from being prescribed high doses of Dopamine Agonists, like you are. We have educated ourselves with the wonderful help from others here. And weaned ourselves off the DAs. It's a worthwhile and difficult process but you'll feel so much better after it's done. I'm on Gabapentin plus Tramadol, but each of us are different and you may need a single medication to control your RLS, or a combination of meds. You've found a very supportive group of fellow RLS sufferers, stick with us and best wishes! We understand.
It's so nice to hear from people in the same boat, honestly it's like you are trapped inside a 24 hour torture chamber, I had after 3pm as I know I'm going to start with the urge, it's bloody horrible then when I do pop a pill it takes ages to kick in and I go sleepy. I have a blood test Monday and then a follow-up appointment re medication next week. However in the meantime I will see if I can get referred to this Dr MURPHY, I'm absolutely scared stiff to do the weaning off as I don't know how I am going to cope .I have a plan to go to the gym at 5pm and sit on a bike and treadmill for a few hours, come home have a bath then pop a pill but decrease over 2 weeks but I will need something to take the edge off. When you all say you came off the DA is that because your symptoms started earlier and worse? When you have come off them what's the difference?
Yes we felt the same horrible twitching and squirming earlier and earlier in the day. I remember wishing badly that I could do 'normal' things like other people. Once you are off that drug you'll have a baseline for your RLS. I'm able to read in the afternoon, sit through a movie, not panic about being confined through the late day! It's amazing. My meds start at 6pm - i take 600mg Gabapentin, then at 8:30pm again, plus the Tramadol at 9pm. I'm getting around 7 hours of sleep a night. I'm just giving you an example of how you may feel once you come out of the horrors and get stabilized on a safer medication.
I feel for you. My advice: Get off ropinirole and get on Tramadol. It’s a Godsend.
BTW, If you’re taking HRT progesterone; that will make you extremely sleepy. Best of luck to you.
This is just my experience but HRT (estrogen only) is stimulating and in the beginning it seemed to help me feel more energised, however over time it became clear that it was increasing the RLS by a lot. If I hadn’t gotten on HRT, maybe I wouldn’t have needed an opioid to control the RLS. Then the opioid caused a heck of a lot of awful side effects that I can’t live with. It makes me speed at night and feel apathetic in the day. I’ve tried Tramadol but it’s nightmarish because it seems to cause augmentation over time.
I’ve had to work really hard to come off of HRT as well as cut down on the opioids, and try and find my baseline. I got to a point where I couldn’t tell when my drugs were making everything worse because they work in such sneaky ways, but it sure seems that way, and I’m still trying to come off of stuff and find some semblance of normality. The doctors that just keep adding more drugs are crazy and should be prosecuted. A lot of people don’t have good drug metabolism and the drugs interact in awful ways.
My experience with HRT was similar to Typicallygaslit. I’ve had RLS most of my life but it was mild and intermittent. When I started HRT it became very bad and constant. I knew nothing of triggers back then so instead of stopping HRT, I went on Ropinirole. Worst decision of my life. 16 years later and up to 8mg a day I learned about augmentation and started my long journey to come off ropinirole. Hardest thing I have ever done, but absolutely necessary. Since I was on such a high dose it took a long time. My advice is to go as slowly with your withdrawal as you need to. The important thing is to keep your sanity while you do this. I am now 4 years free of Ropinirole and my RLS has calmed down considerably, unless I take something that is a trigger.
no… no hrt for rls. Had nothing to do with it. I have hrt for 5 years. It makes no difference. You have augmentation.
I have Buprenophin, a very very low dose. Happy for years. Don’t need to increase.
But stay away from sugars. Big trigger.
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