RLS only when lying down

[mickeyrose]

I have been having horrible bouts of RLS within 10 minutes of falling asleep. I don't have them all day and then as soon as I go to bed I am jolted awake by what feels like little shocks in my legs. This can go on until 4am when I usually fall into a deep sleep. I am type 2 diabetic and on metformin, however I don't think its related as I am fine all day, I have put myself back on HRT patches which has helped a little but I am so sleep deprived I feel constantly fatigued, so strange that I can nap on the weekends fine as well. Really beginning to bug me big time now, any suggestions to help this would be appreciated.

[Hidden]

HI, this is RLS.

The RLS diagnostic criteria for RLS state that a diagnosis is confirmed when

1 a person experiences an urge to move often accompanied by an unpleasant sensation. I believe this is what you're describing.

2 This occurs or is worse when the person is relaxing e.g. lying down - as you describe

3 It usually occurs at night or is worse at night - as you describe.

You probably find that if you get up, it relieves it.

One of the main problems with RLS is that it prevents you getting to sleep because as soon as you lie down to try to sleep, the symptoms occur and wake you up.

In one way, I hope you find this is reassuring i.e. that there is nothong unusual about your experience, you are simply experiencing the symptoms of RLS.

Soime people may experience milder symptoms than this and it may be that your symptoms have been milder before. However, what you now describe, especially if this happens every night is now severe.

If you haven;t sought help with it before, it's good thst you're now doing that.

I will write more later, but as a RLS "first aid" measure. If you find you can't get to sleep, then get UP. Do not lie there struggling.

[Hidden]

What I would usually do is give an overview of all the things that can be done to help with your situation, but I'm not going to do this on this occasion as it does take a long time.

and, in addition

You also might find it a little insulting if I ramble on telling you things you already know.

So if you wish - you could give a little more detail e.g. how long have you known you have RLS, how long has it been like this and what are you currently doing to prevent or relieve the symptoms.

Then I can offer more information.

[mickeyrose in reply to Hidden]

Thank you for your replies. I have not yet consulted my GP as due to Covid they are only seeing urgent cases and I do not think I will get past the receptionist with this. I had RLS many years ago during both pregnancies (last 33 years ago) but it went away after, I would get the creepy crawly sensation sometimes when I was overtired but going to bed would stop it. The last year it has got so bad, I think menopause has had an effect, I am 59 and in a late menopause due to being on HRT since age 40 due to a hysterectomy. Now it happens every single night, I am so tired I pass out immediately only to wake every 20 minutes or so until around 4am. I have to get up out of bed and go play a computer game, diverting my brain seems to stop it, I am sitting at my keyboard now falling asleep as I type, my legs have calmed again and I will collapse back into bed praying I sleep until morning, but I never do. I have huge bags under my eyes and feel the need to nap every day, however I work so this is impossible. I have tried magnesium pills, leg stimulation machine, walking, ovaltine drink. A hot bath sometimes gives me a couple of hours.

[Hidden in reply to mickeyrose]

I hope you do get past the receptionist as I would have thought your case is rather urgent, Most GPs now only give telephone appointments. They may be restricting the numbers of patients actually going into surgeries, e.g. for blood tests, but otherwise you should be able to get a telephone consultation.

I'm assuming you live in the UK, sorry if I 've got that wrong. This forum is fairly international.

I hope I am wrong, but I'm afraid that you may find your GP like many, may not be particularly knowledgeable about RLS. This is something that some people find difficult to accept. So when you do speak to your GP it would be really helpful for you to know a few things. Your GP may be aware of some things, but not others.

Firstly, if you've previously been diagnosed with RLS and it's in your record then OK. If not, then your GP may first want to confirm the diagnosis. If this is a problem then you can refer them to the accepted diagnostic criteria for RLS. Here's a link to the criteria.

irlssg.org/diagnostic-criteria

You can see your symptoms match the criteria, so you do have RLS, there are no tests for it. You can give the web site address to your Dr.

As regards treatment, what I'm going to write is largely based on the UK national guidelines for the management of RLS. These are published by the National Institute for Health and Care Excellence, (NICE).

Your Dr may not be familiar with these particular guifelines, but they will know of NICE.

Here's a link to the guidelines

cks.nice.org.uk/restless-le...

I hope you live in the UK because this web page is only accessible in the UK. I will refer to the guidelines as "NICE".

Hopefully your Dr will know that blood tests for iron deficiency should be carried out. If they say this then ask if this includes serum iron, transferrin, ferritin and haemoglobin, (Hb). If they don't mention any test, then request these tests.

Iron deficiency is strongly associated with RLS and this is partly why many women experience RLS during pregnancy.

Briefly, it's your ferritin level that's important, not necessarily your Hb.

This is clearly stated in by NICE.

According to NICE, ferritin is only an issue if it's below. 50ug/L. Yours probably is. The point is, when you get the results you need to know the numbers, being told it's "normal" or "OK" is not enough.

NICE does not say this, but there is research evidence that 50% of people with RLS can benefit from raising their ferritin to at least 100ug/L.

It is possible but not quick or easy, to increase your ferritin by taking an oral iron supplement.

I suggest that irrespective of what your Dr may say, that you DO start taking an iron supplement now. You do not need a prescription. In some respects it is better to get an over the counter supplement. "Gentle iron", ferrous bisglycinate, is popular in RLS as it less upsetting to the digestive tract. The last GP I discussed my ferritin with did agree an otc supplement would be better than a prescription.

Research evidence also shows that taking iron is more effective if you do NOT take it every day. It is better to take it every other day and take double the daily dose. It's best to take it 30 mins before or 2 hours after eating and either drink a glass of orange or take a vit C tablet. Iron is not easy to absorb, but this will encourage it.

I'm afraid this will possibly take months to work, but it is well worth doing.

NICE does not state this but deficiencies in magnesium, vitamin B12/folate and vitamin D, if corrected can improve RLS.

The next thing to consider is if there are any "aggravating" factors making your RLS worse. If you're on any other medication then it may be making your RLS worse. If so then you'll need to discuss with your Dr if you can stop the medication or switch to an alternative, IF it's possible. NICE does state this.

[mickeyrose in reply to Hidden]

I am in the UK, I should add it is always only one leg and it alternates. The sensations are so strong it jumps me from the bed and is impossible to ignore.

[Hidden in reply to mickeyrose]

This sounds really awful, I'm sorry. However, again, it's not unusual many people with RLS experience the same.

You can start taking supplements i.e. iron, magnesium, vitamin B12 and vitamin D, but I would attempt to see your doctor. I can't see why you can't get a telephone appointment. If you're not sleeping, every night, then this is quite urgent. I think you need to be quite assertive.

If you do talk to your doctor then it might be a good idea to write down your experiences and ig necessary read them out to him/her. People, including Drs can be quite dismissive about RLS if they've never experienced it themselves.

Be prepared to mention the diagnostic criteria to the Dr and you can give him the URL if necessary.

If the Dr agrees with the diagnosis he/she may suggest a medication - that's what GPs tend to do prescribe something. If that's what you want, then that's OK, but you also need to discuss the metformin as well. i.e. it may be making your RLS worse, is there an alternative?

If they do advise a medication I think you need to be prepared to have made your choice before and be clear about your reasons for the choice.

Otherwise, I fear, the doctor will advise a dopamine agonist (DA) and you may find yourself just accepting this. He/she will say either pramipexole, ropinirole or rotigotine. If they judst say "something" ask what's the name.

My suggestion, based on my own experience is that rather than taking a DA you should try a "gabapentinoid" first.

You can choose, Drs have to give you a choice. Here's a comparison.

DAs can be very effective for relieving symptoms and helping get to sleep. They are usually effective the very first time you take one. They can totally eliminate all symptoms.

Gabas can also be effective and help get to sleep. They do not work immediately, it may take 3 - 4 weeks to start working.

DAs have side effects, the first you may experience is drowsiness. This will improve after a week or so. DAs can cause weight gain.They also have other side effects.

Gabas have side effects, the first you exoerience eill be drowsiness.

This should improve within a few weeks. You may have some dizziness and stumbling when walkinhpg. Your vision may be blurry in the morning. Gsbas can cause wreight gain.

BOTH you have to stsrt on the lowest dose snd buold up to an effective dose.

DAs you start on the lowest dose possible and if it works then stay on that dose indefinitely. If it doesn't work then and only then increase the dose. Fepending on which DA it is then there is a limit to how much you should take.

Gabas you start on the lowest dose and build it up gradually until you reach the average minimum effective dose. If thst's not worked after 4 weeks you can increase it further.

DAs you may find after a while, if you miss a daily dose then that night your symptoms will reappear only much worse. This is dependency. Another thing that might happen is that they appear in the morning.

DAs after a few years, but possibly only months you may find that you start waking up early.

Gabas - a side effect of gabas is that they can help sleep and relieve anxiety.

DAs after a few years but possibly only months you may find that symptoms reappear and the DA is failing to work. If you don't increase the dose at this time then symptoms will slowly get worse.

If you do increase the dose at this time, symptoms may quickly get worse and this is known as augmentation. With augmentation your symptoms will be considerably worse, spread to your arns, shoulders and abdomen, happen earlier in the day, happen quicker, be more intense and 3 hours sleep or less every night.

Gabas can fail after a while. There is some scope to increase the dose. They do not cause augmentation. They do cause some visual pronlems in some people.

DAs if augmentation occurs, the DA has to be reduced or stopped this can cause severe withdrawal symptoms. Some people experience mental health problems for months. Sme are unable to withdraw. You may find yourself taking a medicine that is making you worse and you're not able to stop it.

Not everyone experiences augmentation, but there is a high risk with DAs, the higher the dose, the higher the risk. Gabas do not cause augmentation.

Gsbas some people have to stop taking these because of side effects. There are some withdrawal.effects.

If you want to try a DA it is a choice your Dr has a duty to warn you of the risks. If you want to try a gaba first,bthe Drbhas acdutybto mention this alternative but probably won't. In which case you'll have to ask for either gabapentin or pregabalin.

If the doctor asks why,then you can say because of the high risk of augmentation caused by DAs.

At this point you could refer him/her to the NICE guidelines for RLS which you ought to be familiar with.

It may be yoyr GP wants to refer you to a neurologist. According to the NICE you don't as yet, fit the criteria for this, it could take months andbit may not he any great advantage. they may just give the same choice.

[Hidden in reply to mickeyrose]

Part 2 : Metformin may possibly be a factor in lyour RLS.

NICE also mentions "underlying conditions" i.e. other health issues that may worsen RLS. Diabetes is one. In that case it is important fir your RLS to keep your Diabetes under control.

There are quite a few medicines that aggravate RLS.

What NICE doesn't mention is that food and drink can aggravate RLS. Alcohol and added sugar should be avoided. Any food with refined carbohydrates or monosaccharides in should be avoided. This obviously also helps your diabetes.

You might wish to discuss a low carbohydrate diet with your Dr or a nutritionist. This may hekp wuth RLS, but it may also be possible to control your diabetes without metformin.

In addition if anything you're eating is causing inflammation then this is a factor in RLS. You may be gluten or lactose intolerant. An "anti-inflammatory" diet may help.

Unfortunately, these measures, although important are not guaranteed to deal with RLS and they're not quick. Any benefit is not going to be immediate.

In which case you may wish to consider a RLS medication. I would urge you not to do this if you can avoid it, only if you feel you must. There are medicines which relieve RLS symptoms, but there are problems with them all.

It's when it comes to medicines that Drs potential ignorance really becomes apparent.

NICE states two classes of meds for RLS as a "first" treatment

1 Dopamine agonists, pramipexole, ropinirole or rotigotine.

2 Alpha 2 delta ligands, gabapentin or pregabalin.

Drs, still, commonly think of the dopamine agonists (DAs) first. It's still very common that they're not aware that these are no longer recommended as the "first" treatment. NICE is a little out of date

In addition, Drs seem largely unaware that gabas (2) can be used for RLS. This is partly because they're not licensed for RLS. My GP, at one time, was prescribing me a DA for my RLS and gabapentin for something else at the same time. Neither of us had a clue that gabapentin treats RLS.

The gabas ARE recommended to be tried first. So if you do want a RLS med, I suggest you ask your doctor for either gabapentin or pregabalin and refuse a DA.

Why? As stated by NICE the DAs have a risk of longer term complications. NICE state people should be warned about this, but I never was.

The main risk with a DA is "augmentation". It"s very common and it is a significant worsening of RLS symptoms, many times worse than what you experience now.

If your Dr asks, that's why DAs should be avoided if possible.

If your Dr does prescribe gabapentin or pregabalin, you may need more information on doses. The normal UK prescribing guide for the medicines (BNF), does not mention RLS. The difference is that for RLS the daily dose is not split, i.e. 2 or 3 times a day, it's once a day. It doesn't really matter, my prescription says twice a day, but I take both doses at the same, i.e. 2 - 3 hours before bedtime. This is quite safe accirding to the BNF.

I suggest you read NICE. Hopefully it will give you more confidence in asking for appropriate treatment. A UK doctor would be unwise to ignore NICE guidance once they're made aware of it.

I hope this helps, you're welcome to post any questions you have.

You may get other responses, some may mirror what I write, some may add further detail. Some may suggest other things which it might be safer to be sceptical about.

If you're not in the UK, what I write is still applicable, I just can't support it be referring to NICE.

Phew!

I hope you're asleep now!

[Micafe]

Hi!. I suffer from RLS and my experience with it is quite peculiar. We know that it happens when we are lying down, something people normally do at night.

I have several health problems and sometimes during the day I need to lie down to rest. You would think my RLS would start bothering me when I do that. Well, it does not!. It starts in the evening when I go to bed but it seems it can tell what time it is! When I go to bed early, let's say 9pm, not to sleep but to watch TV or read, it usually doesn't bother me. But... around 11pm the horrible monster never fails to show up! It's crazy.

[Hidden in reply to Micafe]

This isn't at all unusual. Unpleasant, but not crazy. RLS being worse at night is one of the diagnostic criteria. Sometimes people say their symptoms are constant, all day, in which case this is suspicious and may not be RLS at all.

The scientific explanation for this is that symptoms get worse when dopamine levels ( a neurotransmitter), get low. Naturally, dopamine levels normally rise and fall in a 24 hour cycle. This is called a circadian rhythm.

The level of dopamine and some other neurotransmitters and hormones are normally at their lowest about 2 am. This is why RLS is classified as a sleep - movement disorder. Sleep is a circadian rhythm.

This is also why any medicines that lower dopamine levels, e.g. sedating anti-histamines can make RLS worse.

Circadian rhythms are regulated by external "cues", one of which is light. We tend to be sleepy when it's dark and awake when it's light.

Circadian rhythms can be disrupted by various things. Crossing time zones disrupts them, i.e. "jet lag". The development of electrical lighting has possibly been a major factor in sleep disturbances.

Somebody with RLS, particularly with sleeping problems should then observe "sleep hygiene" measures e.g. always go to bed and get up at the same time. Ensure you get as much exposure to natural or full spectrum light during the day and avoid it in the evening. Using backlit devices,ve.g. TVs, laptops etc should be avoided in the evening unless the display has a night mode where the blue light is tuned out.

Some people do experience RLS symptoms during the day, but even then they may be worse at night.

If symptoms which initially are only experienced at night start happening earlier for someone being treated with a dopamine agonist, then this is a sign of augmentation.

If you lie down during the day and you have no RLS, this isn't peculiar at all.

[Micafe in reply to Hidden]

What I call peculiar is the time of the day my RLS starts bothering me. It's always at or close to 11pm. Not 10pm, not 9pm.. just 11pm. It's not really important. I find it strange.

[Hidden in reply to Micafe]

As I say, it's not really that peculiar, a lot of RLS sufferers find it "kicks in" at a patciular time.

[mickeyrose in reply to Micafe]

Mine always start around 11 to 12pm as well

[Eryl]

What's causing your rls is most probably what's causing your type 2 diabetes, ie a high carb diet. rls is most often caused by inflammation of the nerves due to insulin driving the mitochondria in the cells to consume the high blood sugar caused by eating large amounts of carbohydrates. When the mitochondria can't process the blood sugar (glucose) fast enough then you become diabetic.

The answer is to avoid foods with added sugar eg biscuits, cakes, deserts and confectionery. Also avoid fruit juice and bread, especially white bread, as it has a higher glycaemic index than pure sugar because the gluten is easily broken down by saliva, and a breakdown product is gliadin, which causes you to absorb the carbohydrate high up in the small intestine, instead of it getting to the microbiome in the duodenum to be broken down further.

[Hidden in reply to Eryl]

Hi Eryl, can you clarify please, gluten and gliadin are proteins, not carbohydrates.

They are involved with celiacs disease or gluten intolerance which causes inflammation.

I'm still learning about these factors in RLS.

[Eryl in reply to Hidden]

Gluten is broken down by saliva into Gliadin and Glutenin. The Gliadin is what causes the allergic reaction in Celiacs. In non Celiacs it still causes a problem, because it causes the Villi on the wall of the intestine to open up and cause leaky gut. This allows absorption of components of food to be absorbed in the small intestine instead of travelling to length of the gut to be processed correctly.

If you want to learn more about this process look for videos by Dr William (wheat belly) Davies on youtube.

[Hidden in reply to Eryl]

Thanks Eryl, I couldn't see what this has to do with carbohydrates. Are you saying that gliadin causes carbohydrates (CHOs) to be absorbed prematurely?

Also, if CHOs aren't supposed to be absorbed in the small intestine, where are they supposed to be processed correctly?

Also, since all CHOs have to be broken down into glucose before they can be absorbed, why does it matter where they're processed or absorbed?

[Eryl in reply to Hidden]

Yes, as Dr Davies explains, they're absorbed by the small intestine instead of the duodenum following being processed by the microbiome which would make use of some of them. That's why white bread has a higher glycemic index than sugar, though it's a shorter spike. The height of the sipke is what triggers insulin release and the following dip in blood sugar.

[Hidden in reply to Eryl]

Thanks again,

Sorry to be a bother, I'm trying to understand this theory.

Please clarify "they're absorbed by the small intestine instead of the duodenum ",

Is "they" carbohydrates?

Please explain "instead" as the small intestine has three parts from first to last - duodenum, jejunum and ileum. How can the dudenum be instead of the small intestine if it's actually a part of it?

[Eryl in reply to Hidden]

Sorry, I'm not a medic, I got my names mixed up. Instead of duodenum, read large intestine.

Dr Davis explains it all.

[Hidden in reply to Eryl]

I'll try and see what Dr Davis says.

The large intestine's main functions are to absorb fluids and process waste. Glucose, i.e. digested carbohydrate is absorbed in the small intestine. That's the correct plae for it to be absorbed.

You may have possibly got this mixed up.

[dlr222]

this is what I did before starting the low oxalate diet. sometimes I could sleep awhile then get up and do this. now no v-8 or melatonin

take iron pills. 1

natural sleep tabs, 2

(no antihistamine)

low sodium V8 juice with potassium (salt substitute)

cookies with sugar, 2

, and part of banana

theragesic on legs and leg warmers

massage legs

vicks on feet and socks

exercise

liquid magnesium on stomach

Aleve if needed

melatonin, chewable

Donna

[wildlegs]

Welcome to the world of RLS. I’ve had it for 30 years and what you describe is how it is. I have taken many things to try and help but nothing is perfect. For the last three years I’ve taken Tramadol and that’s about 90% helpful. Don’t mean to sound like a pessimist but that’s the way it is. Good luck and if you ever find something that works please let the people on this site know.

[cat-a-tonic2]

Hi, and sorry to hear of your torment I had the same problem, as part of having fibromyalgia and chronic fatigue, or ME. The RLS happened only when I was lying down, though I had muscle spasms in other parts of my body. It felt like an electrical current was running through my legs and building up a charge in my muscles. I had to kick to relieve the discomfort.

I heard a tip from a fellow sufferer that magnesium can help to alleviate RLS, so started taking a high dose daily, years ago - about 1.5 g. It makes a world of difference! While I still have some discomfort and muscle spasms, the problem has improved enormously. Occasionally now, I have a feeling like the RLS is still trying to happen, but doesn't quite.

I had a horrible problem too with spasms in my jaw muscles, which caused my jaw to shoot forwards and catch my top teeth on my bottom teeth. As a result, all of my front teeth are chipped and cracked. I would even wake in the night with chips of tooth on my tongue. Thankfully, that has improved too.

[danamias]

I'm in the UK. Have had RLS for about 5 years - I'm 63. My doctor put me on ropinirole - and yes, I did augment. I'm now on gabapentin and ropinirole which seems to work at night. But still can't nap during the day. I know some people take gabapentin during the day too so my next step is talk to my GP about this. Definitely contact your GP. Even though they will be extra busy for obvious reasons they continue to do their 'day job'. You can book a telephone consultation 👍