Hi there (newbie): Well, here I am led... - Restless Legs Syn...

Restless Legs Syndrome

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Hi there (newbie)

simplysal profile image

Well, here I am led in the bath…..at 00:09am!

And I’m utterly shattered for these regular (nightly) twilight baths to help my legs from constantly moving in the bed, no matter what my ‘sleeping’ position (sleep, what was that again?).

My restless legs joined my body a couple of years ago but would annoy me in the evening when sat downstairs but as soon as I’d come up to bed and lay flat, it seemed to disappear.

Fast forward the last four months where restless legs aren’t happy to just annoy me in the evening. It’s now joining me when I’m led out flat and desperate to sleep.

I have an under active thyroid (last twenty years) so I’m familiar with feeling fatigued by day. I go for annual thyroid function tests to check my thyroid levels.

My under active thyroid has always resulted in me sleeping well at night. Could literally ‘fall on my nose’ and would be asleep almost as fast as turning off a light switch.

Those days feel long gone and now only a distant memory!

I’m soooooo sleep deprived right now it’s unreal! And I work in the NHS by day full-time so I feel I’m suffering.

What may have changed?

Well I needed a cardiac stent fitted in November 2021 to treat a 90% blockage in my LAD artery. I was placed on both aspirin and anti-platelet Med Prasugrel for twelve months to avoid any clots from forming around the new stent.

I do not smoke, only drink a glass or two of wine on weekends and drink decaffeinated tea and coffee.

GP wants to check my iron levels given I’m on these blood thinners. But even if they find I am, they can’t stop the blood thinners and the risk of heart related problem becomes a bigger health risk than my restless legs.

Last night I woke at 12:30am and didn’t drop back off until 4am. Had to then wake at 7am, for work.

Many nights every week resemble this one!

Have never experienced insomnia before ever. It’s horrid! When I’m tossing and turning in bed and unable to keep my legs still, I know I have to run myself a bath. Yet feel physically sick at the thought as I’m soooooo overly exhausted I feel like I could pass out when in the bath or immediately afterwards.

Any advice? Huge thanks to you all, Sally (45yr old female, UK).

33 Replies

oh, god, you poor thing. I just had to write back in sympathy as you are probably still sitting in the dang bath! I am in the US and sending you big hugs across the pond! Insomnia and rls are absolute TORTURE.

More than likely, your ferritin is low. Also, certain drugs you are taking and some of your habits (wine is not ideal) are often triggers and make things much worse.

Do you have a massage gun? Many of us find that using one does help-see posts on here. I had one and rarely used it until I saw a post from a woman in the UK who swore it worked. It does! It is not perfect but might be better than having to get in the bath.

Also-I would order some Kratom straight away (how is that for British slang?!). It works within minutes and you need something to get you through this immediate hell. It has saved me many times, thanks to posters on this forum.

Also try a THC and CBD product-others in the UK are doing so with success.

If you haven't taken RLS drugs before-start gabapentin when you can get an appt. Search on this forum for doctors who actually understand RLS in the UK. Don't waste time waiting for the wrong doctor and a bad appt. as all the rest of us have done many times.

Get your ferritin tested immediately and work on getting that into the 100's, 200's or 300's. That alone may stop your symptoms-if you don't have a big drug or food trigger going on.

Ck the list of drug triggers asap!

There is a ton of great info on this site. You are going to get the right help!! Your fully sleepless nights will be over soon, I hope!

Many sympathy hugs from Chicago!!!

simplysal profile image
simplysal in reply to TeddiJ

Huge thanks for such a wonderfully supportive message. It’s great to hear from others who have ‘been there’. As you can imagine I’m beyond cream crackered today. I’ll ask GP to check that Ferritin level (is that different to Iron? I have no clue lol) when I have my bloods done on 26/05.

I’ll also try a massage gun - anything than putting up with this incredible insomnia!

Good sleep is so important for heart health….yet right now I’m soooo sleep deprived.

Thanks again for reaching out 🥰, Sal.

TeddiJ profile image
TeddiJ in reply to simplysal

Hi. You're welcome! Yes, ferritin is a separate test and I have to ask for it to be included.

When you say to us, "I'll ask my GP" we all shudder; they will not know anything. YOU need to provide the info discussed in this thread.

BUT, much better to go to the docs that Julesg and other UK folks have mentioned on here. Otherwise, it will just slow you way down, having to constantly manage your doctor and/or be refused help by them.

Tons of fantastic advice here-I hope last night was your worst and things improve tonight.

Take iron with C an hour before bed, on an empty stomach-it might help. Take a bunch of magnesium citrate and D3 with K a few hours before the iron-also may help.

Dash out to find kratom powder or get THC from someone to get through the immediate future with sleep! (if they can be mixed with what you are taking, of course).

Hang in!!

I'm so sorry. It's a horrible feeling. You wouldn't be taking anti-depressant would you.? Just wondering as it a huge antagonst.

No. My current meds are Levothyroxine (for thyroid), Aspirin & Prasugrel (for stent), Omeprazole (to protect my stomach from damage due to blood thinners) and Propranolol (to help with irregular heart rhythm). Oh and Atorvastatin by night (for cholesterol).

The Thyroxine and Propranolol I’ve been on for years. The Aspirin, Prasugrel, Omeprazole and Atorvastatin were only started in November 2021 since they found the heart issues 👍

Joolsg profile image
Joolsg in reply to simplysal

I'm so sorry to hear what you're going through. RLS is a horrible, sleep stealing thug. And you've really been through a rough time with your heart problems.Omperazole and atorvastatin both worsen RLS unfortunately and that is probably why you're now suffering.

Can you discuss other possible meds with your doctor? If the Omperazole is to avoid stomach issues, ask if gaviscon or a magnesium based product would work as those are safe options for RLS sufferers.

The statin may not be replaceble but please discuss in detail and explain it has triggered RLS and no sleep.

As others have mentioned, your serum ferritin is probably low so get your blood results and if it's below 100, ask your cardiologist of it's alright to start supplements. Ferrous bisglycinate every other night raises levels faster than once a day as it fools hepcedin.

An iv iron infusion of injectafer would be the fastest way to raise levels so ask your cardiologist to discuss with the haematology dept.

If replacing the meds that are triggering the RLS doesn't help, and raising ferritin above 100 ( sometimes 300) makes no difference, you may then have to start RLS meds.

Gabapentin and pregabalin are now first line options and low dose opioids work well.

You will clearly need a detailed meds review with the cardiologist. Sadly, he or she will be unfamiliar with RLS so explain how little sleep you're getting.

I really hope they can find suitable alternatives to the Omperazole and the statin.

Sending positive thoughts your way.

lorri214 profile image
lorri214 in reply to Joolsg

I have been taking omeraprazole for years. I never knew it could have an effect on rls. I'm going to ask my dr. about that.

Joolsg profile image
Joolsg in reply to lorri214

Your doctor won't know. As it's not taught. But look at the post by Jules on meds that worsen RLS and many meds are listed. As doctors aren't taught about RLS or meds that worsen it, I doubt your doctor will be aware of this.Try probiotics or gaviscon or milk of magnesium.

lorri214 profile image
lorri214 in reply to Joolsg

if the drs don't know what drugs affect rls, how does Jules know?

TeddiJ profile image
TeddiJ in reply to lorri214

The people on this forum, especially Joolsg and Jules-haha- know far more about RLS than most doctors. Yet all anyone has to do is google.

Joolsg profile image
Joolsg in reply to lorri214

Teddi has answered your question. Doctors are not taught RLS at medical school and therefore they have no idea what drugs worsen the disease. My neurologist prescribed Amitriptyline and my RLS became 1000% worse. Even neurologists have very little knowledge of RLS or the complications of RLS meds.If you read the posts you'll see how bad it can be. Some doctors prescribe 16mg of Ropinirole and tell their tortured patients that RLS is psychological.

That's why RLS patients do their own detailed research, follow the few RLS experts like Dr Buchfuhrer and help each other on this forum.

lorri214 profile image
lorri214 in reply to Joolsg

Thank God for this forum!!! I have an appt. with my neurologist next month. I will ask him about omerprazole and see what he says. Will let you know. Thanks for your help.

simplysal profile image
simplysal in reply to Joolsg

Huge thanks Joolsg 🥰

SueJohnson profile image
SueJohnson in reply to simplysal

Unfortunately 2 of your medicines can exacerbate RLS symptoms - Levothyroxine and Atorvastatin, both of which you need. NEXLIZET is a cholesterol lowering drug that is not a statin, but I don't know if it exacerbates RLS symptoms. Or a more drastic solution, but a healthy one: My husband lowered his cholesterol from 221 to 131 by going on a vegan diet.

I really want to empathise with your situation. It's hellish coping with work and RLS. You must be drained.Your iron levels will be crucial to improvement. Ferritin needs to be at least 100.Don't be fobbed off by being told it's satisfactory. Ask for the numbers.Most GPs know little about RLS.Search the Mayo Clinic algorithm for treating RLS and armed with this information you can be proactive in asking for the treatment you want.Gabapentin is the usual first line medication. Others on here will.give you advice on dosage etc. Be aware that certain drugs can trigger RLS symptoms eg anti depressants, anti histamine,anti nausea drugs.

Huge good luck.

Xx

simplysal profile image
simplysal in reply to Jumpey

Huge thanks for responding. So I’m not on antidepressants, antihistamines or anti nausea meds but I take on board that my other meds (as listed above) may be playing a part.

I’d take a hammer to the head, just to have a good night’s sleep lol!

Cheers for the advice. I’ll ask GP when they do the bloods to check the Ferritin levels. I have to be careful when introducing new meds in case of contraindications with my heart meds. But they surely would know if Gabapentin would be alright. Huge thanks again 🥰

I’ve been where you are: ugh! Getting up and taking baths in the middle of the night, especially when it’s cold, is torture! Here’s another suggestion: compression socks with the sock bunched up under the arch of your foot to apply extra pressure works for me. However, be careful not to fall asleep with the socks on as it could effect your circulation if left on like that for a long time.

Thanks for that great suggestion. I guess that would help when awake. Not sure when I then take them off before falling asleep whether having worn the compression socks would allow my legs to rest then during the rest of the night?

I can have a bath, fall asleep say 11pm. Wake at 1am with restless legs….have another bath….then sleep for another few hours before tossing and turning again.

From around 5am onwards I sleep lovely lol! But then loathed to wake up with my alarm at 7am. Huge thanks for reaching out, Sal 🥰

First off, have you been diagnosed with RLS. From what you said, it may be PLMD, But they are both treated the same. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. To elaborate on what others have said. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead have him prescribe gabapentin. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks to be fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 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. Most of the side effects of gabapentin 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 daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. 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...

simplysal profile image
simplysal in reply to SueJohnson

I’ve done a fair bit of reading on both. It’s definitely Restless Leg Syndrome, I’m sure of it. From what I’ve read, RLS occurs when awake and asleep. The other usually only during sleep. Preceded by an awful sensation in the legs that drive an urge and a desperate need to move them. It can begin in the evening and during the night. No problems in morning or by day. Symptoms are eased with movement.

I won’t make a note of the numbers you’ve mentioned as you’ve kindly placed them here. But whereas before I would have trusted a response ‘your bloods look normal’, based on what you’ve suggested, I’ll be asking them to give me the numbers and I’ll write them down. I’ll then come back to this thread and compare them to your suggestions. Very helpful indeed!

Silly question but I have no clue, they are testing me for iron deficiency. Will Ferritin and transferrin be done automatically? My basic understanding is they are checking iron levels. Are Ferritin and transferrin saturates part of that? Or do I need to ask them to check these as well as Iron (I’ve clearly not read up on that lol! But I can of course).

My Cardiologist asked me to not take vitamins. There are some that can be a contraindication of the heart meds I’m on so any medications suggested will have to be agreed by my cardiologist first but I’ll ask for Gabapentin. Yes whilst I’m not taking vitamins, if iron deficiency is causing my restless legs causing horrid insomnia, that can’t be left untreated.

Thanks so much for your very comprehensive and helpful response. I’ll refer to it again when the figures to my blood test is known.

Worth noting, both my mother and daughter have a diagnosis of RLS. Unsure if it’s hereditary or mere coincidence.

Take care, Sal.

SueJohnson profile image
SueJohnson in reply to simplysal

RLS can definitely be hereditary, and since your mother and daughter have it, it is obviously the case with you. As far as testing for ferritin and transferritin saturation percentage, they are not done automatically which is why you need to ask for a full iron panel and perhaps specifically state you want your ferritin tested.

simplysal profile image
simplysal in reply to SueJohnson

Huge thanks, I’ll ask that it be included 👍

Good morning...at least here in the States it's morning...lol. I am soooo very sorry to hear how much you are suffering right now. I can't offer any medical advice, but I know that for me, once I started having RLS, I could no longer have ANY alcoholic drinks. So even the occasional glass of wine would set me off no matter what time of the day or night. And, believe me, I was never a big drinker. I would maybe have a glass of wine or margarita with supper when we would go out to a restaurant to eat which was only maybe once a week. It eventually got to the point where if I just had a couple sips it would cause my RLS to act up right there in the restaurant! It's sooooo frustrating!! Anyway, I'm sorry I can't offer you any more advice. Since you mentioned that you drink wine on occasion, I thought I would share my experiences with that and how it affects my RLS. Good luck and I hope you find relief soon!!

simplysal profile image
simplysal in reply to LanaCSR

No, this is very helpful indeed! Thank you for sharing your experience. Losing a glass or two of wine during a weekend is a small sacrifice to afford myself a better night’s sleep. I’m more than happy to forego the wine if that’ll help. Huge thanks, Sal.

LanaCSR profile image
LanaCSR in reply to simplysal

I know for me I notice it immediately after drinking alcoholic beverages. So if you don't notice an increase in your RLS symptoms immediately after drinking, then you're probably safe continuing to drink your few glasses of wine since it sounds like you don't drink a lot. Then you can still enjoy the occasional glass of wine. It helps to try one change at a time when trying to figure out what is causing your RLS to act up instead of cutting everything out at the same time. Then maybe you will find the culprit somewhere else and will be able to still enjoy other things in your life (🍷)...lol.

Hi Sally, welcome, but I wish you didn't need to be here. Others, especially the very experienced Joolsg have given you good advice. I just want to stress that you should try to go without meds for as long as possible. That doesn't mean putting up with sleep-interrupted nights though. Trying to do without the meds that exacerbate RLS would definitely be your first step together with assessing iron levels. Nite cholesterol can be controlled with diet. More difficult, but... well...probably better for your RLS.

Have a look at the recently updated Guidelines for the treatment of RLS in the Mayo Clinic Proceedings. mayoclinicproceedings.org/a.... Edit: I just noticed Sue also posted this link. Sorry for the repeat. It is hopefully worth while to bring/give the paper to your gp and cardiologist. The fact that your gp wants to check your iron levels may indicate that s/he is somewhat knowledgeable about RLS.

One other thing. An old and not too good blood thinner, dipyridamole, has recently surfaced as a fairly effective medicine for RLS. I'll give you this link to a blog at the US patient organisation website with further info and background: rlsfoundation.blogspot.com/.... The original papers by Ferré are very difficult to read, even for scientists like me.

Good luck. Do some more reading on this forum, you'll get tons of inspiration. Never hesitate to come back for more advise, experiences or simply to moan, as we understand. We do appreciate updates, so keep us posted if you feel like it.

simplysal profile image
simplysal in reply to LotteM

Huge thanks! Yes you’re right. I’ve been taken aback by the finer details that you’ve all shared on here. I do understand a situation where one might be stuck against medical professionals who through a lack of knowledge on a particular condition may direct you to unhelpful meds and other unhelpful suggestions. I’m new to the world of RLS so unsure how knowledgeable medical professionals around me are. But I’ll soon put their knowledge to the test.

I trust the knowledge from those living with RLS. After all, medics gain their knowledge through case studies. We here are all living case studies! I feel I’m in very good hands on this forum! Huge thanks 👍

A mirror to my story! "Have never experienced insomnia before ever". My severe RLS was sudden onset, preceded by months of "sleep issues". After months - I discovered the iron connection (actually by taking Black Strap Molasses - contains iron). Then full-on supplementation with ferrous bisglycinate chelate eliminated the severe RLS - but ALAS not the insomnia! The first thing I read every morning is This Forum - still looking for THE solution and a return to my old sleep patterns - somehow.

Eryl profile image
Eryl in reply to DicCarlson

The trouble with blackstrap molases it that it's almost pure sugar and although it has a low glycaemic index (i.e. it's not aborbed quickly), over the day it will add to your glycaemic load. The best way to increase iron intake is to eat red meat wich will not add to your glycaemic load at all. In most cases of RLS the cause is inflammation caused by high blood sugar amongst other things.

simplysal profile image
simplysal in reply to DicCarlson

So sorry you’re a fellow insomniac! I always slept well…..as I’ve said with an under active thyroid, I could always sleep on my nose. I’ve read that an under active thyroid can cause RLS but I’ve had this for twenty years. It’s just interesting mine has become debilitating over the last few months. Seems to tie in with the start of the antiplatelet meds, which can cause iron deficiency which can cause RLS. It was also the time I was started on both the statin and Omeprazole so I guess they’d (GP or Cardiologist) would need to give thought to which one of these may have driven such a sudden worsening of RLS to hopefully make a change (if a change is possible) or to think of ways it might feel better managed. I certainly have emphasised my debilitating lack of sleep. I hope we both get answers soon. This forum is a godsend! 🥰

Hi simplysal, I know how you feel. I've got stage 4/5 CKD & on the national kidney transplant list. I work for Sodexo in an NHS kitchen. At first I had restless legs in bed occasionally, or maybe I was too tired and didn't notice. Now I get it every night. It either wakes me after a hour or so of going to bed - or it keeps me awake til 1/2 am Im in the morning. I have an appointment next Tuesday. Maybe they'll give me some tablets. One of the renal consultants tells me not to worry, but it's pretty dispiriting. I'm told tonic water is good. I'm trying some tonight, but with CKD I will have to limit fluid intake at some stage. I also have an iguirnal hernia. I'm told it's a 60 wks wait for that op, but that was in March. Hope u manage to find something..

SueJohnson profile image
SueJohnson in reply to Rambler64

See my long comment above about ferritin and medicine for RLS.

simplysal profile image
simplysal in reply to Rambler64

Sorry you’re experiencing it too. Yes my restless legs started again yesterday evening. Had a hot bath at 8:30pm. My legs felt settled after the bath. Went to bed around 10pm. Legs nice and relaxed. Yet woke after awful sensations in my legs and unable to keep my legs still at 00:30am. Had to get up and lie on sofa. Should have run myself a bath but felt sooooo tired was worried I’d pass out so didn’t. Instead led on settee until I fell asleep around 4am. The sensations in the legs that drive us to move them is awful. Fingers crossed I get answers from the blood results. Hope you find improvement too soon 🥰

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