at wits end!

[Magpie88]

Feeling at my wits end with this currently the worst bout ever and sleep is almost impossible. Finding reading others and their advice helpful. So many folk do not realise how delibarating this is, often still get the 'it's phycological' remark. If only they knew!

[LotteM]

Hi magpie, sorry to read about your currently uncontrolled symptoms. What do you do to combat them? Please read around on this forum, loads of experience, and loads of medical and non-medical approaches to quell the symptoms.

[Lambretta175]

I recently joined this group to hopefully get some sort of help or ideas as I have been suffering for about the last 10 years.I'm nearly 68 and after seeing teenagers saying they have it I dread to think I would have to go most of my lifr with this.I have been on ropinirole but have also now been put on gabapentin.These helped but still struggle to sleep and since retiring I'm getting it during the day.I tried all the ideas of pillows under legs,lying on my front,going to bed same time but nothing has succeded.I'm waiting for this virus to subside to see my doctor again.There appears to be big discrepencies as regards how many of these tablets to take.All I can suggest is see your gp as I was amazed after seeing that this problem is recond to be suffered by 1 in 10 people world wide.Good luck!

[Hidden in reply to Lambretta175]

Generally speaking you may need at least 900mg gabapentin a day for it to be effective. Some people need 1200mg or more.

If you need more than 1200mg, then it may be better to switch to pregabalin. This is because pregabalin is more potent and more consistently absorbed.

Hopefully you've had your iron levels screened as Brain Iron Deficiency is a major factor in RLS, even if there is no iron deficiency anaemia. A blood test for ferritin is appropriate for this. 50% of RLS sufferers benefit from raising ferritin levels to at least 100ug/L. This is above "normal".

Vitamin B12 and especially vitamin D supplements can help if you're deficient in these.

Some people find magnesium helpful.

[Lambretta175 in reply to Hidden]

Thanks.My gp only put me on one or two gabapentin before bedtime.They are only 100mg so I'm only on 200.It sounds a huge difference to 1200.Thats 12 tablets a day unless you can get higher dosage ones?I've also heard that they are using gabapentin because ropinirole is a lot more expensive.I find ropinirole makes me very sleepy but still have rls sensations.Maybe because I'm relatively new to this treatment my gp will build it up over time.I've also seen that you cannot just stop these medications.You have to ween off them.

[Hidden in reply to Lambretta175]

Gabapentin also comes in 300mg capsules or even 400 and 600mg. The effective dose is considered to be between 900 and 2400.

200mg is basically absurd! The usual "starting" dose is 300mg a day, then it can be built up by 100mg a day.

Unfortunately many GPs aren't particularlly knowledgeable about how to treat RLS.. It sounds as if your doctor is one of these.

Gabapentin is NOT being used because ropinirole is more expensive. Gabapentin has some advantages over ropinirole.

Ropinirole is a dopamine agonist (DA). DAs were the first medicines to be used specifically for RLS, but it's now recognised that there is a high risk of augmentation with them. That is, they not only stop working, they actually make RLS worse.

The most up to date advice is that DAs are NOT the first medicine to be tried for RLS, the alpha 2 delta ligands, gabapentin or pregabalin are.

In addition, whereas DAs can cause insomnia and restlessness, the ligands can relieve anxiety and promote sleep.

Cost is irrelevant.

Myself, I consider myself very lucky as I only need a low dose of gabapentin. However, it's still 3 times what you're taking. I also take the same dose every night, at the same time.

Here's a link to some information about gabapentin and RLS.

uptodate.com/contents/treat...

Assuming you live in the UK, here's a link to the prescribing guidelines for gabapentin.

bnf.nice.org.uk/drug/gabape...

Note that gabapentin is not licensed for RLS. The doseage is similar to that for seizures, but ONCE a day, not 3 times.

As regards ropinirole, if you are also taking this and want to stop it, then yes, going cold turkey is actually dangerous, withdrawal symptoms are reduced by weaning off it slowly.

[Hidden in reply to Lambretta175]

PS the cost of ropinirole is apparently less than half the cost of gabapentin.

[Hidden]

Hi, sorry to hear you're suffering. As Lotte asks, what are you currently doing? Particularly if you're currently taking any medications at the moment they may not be effective or may actually be making your RLS worse.

If you aren't doing anything then there are both non-medical and medical remedies.

Although I agree that RLS is not just psychological, as a sufferer myself I'm fully aware of it's physical nature, but I I'm also aware it has psychological elements to it.

There are psychological factors which can make a significant difference to your experience and your ability to deal with the condition.

Unfortunately, although you'll find a lot of "physical" remedies for RLS on this site, the psychological factors receive little mention.

This is probably because a lot of sufferers have reacted to being told "it's all in the mind" and have excluded everything but the physical.

Apart from.that, if you give more detail, more help can be offered.

[Lambretta175 in reply to Hidden]

Because of my age I get a yearly check up by my gp nurse.They do all normal checks,blood pressure lung check,blood tests.kidneys,cholesterol.All my results are near enough perfect,I'm not sure if that includes iron checks.The only problem I had previously was gall bladder removal.I do also suffer a lot with arthritis.When my symptoms started I thought it was my arthritis as I'd never heard of rls.At present I take 2 ropinirole at about 8pm then 2 gabapentin and one ropinirole at 10pm before going to bed.I started taking tumeric pills for the arthritis but up to now havent noticed any difference whatsoever.I do take naproxen as well for my aching joints and prolapsed discs in my back.I do find also that when its really bad(rls)I get my anti-inflammitory rub out and put this on my legs.It helps a lot but I'm not sure if its the anti-inflammatory action or the massaging of the legs putting the rub on which is helping.?

[Hidden]

Hello again. Great to hear all your tests are normal.

Just a word about the "normal" tests. These possibly include a test for iron deficiency anaemia. This is usually a Haemoglobin test.

However RLS sufferers tend to suffer Brain iron deficiency (BID) and this can occur in the absence of iron deficiency anaemia and a Haemoglobin test will not detect it.

A better test for BID is a ferritin test and your GP may not actually be doing this one. Additionally, even if you are being tested for ferritin and it is at least 12ug/L, they may be telling youi it's "normal".

If that's the case then this isn't helpful. 50% of RLS sufferers benefit from their ferritin being at least 100ug/L.

I'd say then, that you need to ask if your ferritin is being checked and if it is, what is the actual result. In this case "normal" isn't good enough for someone with RLS.

As regards the ropinirole, presuming that the tablets you take are 1mg each, its sounds as if you're on quite a high dose.

I don't know how long you've been taking this, but the high dose puts you at risk of suffering augmentation and the longer you've been taking it, the more this is likely to happen. Your GP should have warned you about this.

If your GP is the same as all the GPs at my surgery, they may have never even heard of augmentation.

The fact that you're suffering RLS symptoms earlier in the day and that you have to take the ropinriole earlier strongly suggests you are already suffering augmentation. In this case, the gabapentin is not really going to help much. If you should further increase the ropinriole or take it eartlier in the day, then this will make things even worse for you. Because of augmentation, your RLS will improve overall, in the longer term, if you reduce the ropinirole, it may be doing you more harm than good

I'm afraid it seems that although you have a good GP who is looking after you in all other respects, they are NOT doing what's best for you in terms of your RLS.

I suggest you get the GP to increase the gabapentin to at least 900mg a day, then start to wean off the ropinirole with the aim of stopping it altogether or at least cutting it considerably.

The gabapentin, incidentally, may help with your arthritis pain. I use it for neuropathic pain as well as RLS.

In view of your doctors apparent ignorance of RLS, if they tell you how to wean off ropinirole, it might be better to ignore what they say. They will possibly instruct you to wean too quickly. Under no circumstances should you stop it suddenly, this is dangerous and could also lead to terrible withdrawal symptoms.

If you do decide to do this, I suggest you come back to this forum for more advice on this.

.

Here's a link to some information about augmentation

rls-uk.org/augmentation-reb...

Here is an exceprt from the UK national guidelines ion the management of RLS

"What drugs should I consider to treat restless legs syndrome?

First-line recommended drug options for people with frequent or daily symptoms are either:

* A non-ergot dopamine agonist (pramipexole, ropinirole, or rotigotine), or

* An alpha-2-delta ligand (pregabalin or gabapentin — both off-label indications)."

Concerning dopamine agonists -

"Before commencing drug treatment, ensure the person is aware:

Of possible treatment complications. In particular, augmentation, loss of efficacy, and the risk of impulse control disorders (ICDs)."

Here's a link to the guidelines.

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

[Lambretta175 in reply to Hidden]

Thank you very much for your replies.I have found them very informative.My background was as a maintenance engineer in a large factory which involved a lot of walking,I also did 3 different shifts which highlighted the problem when I was on nights or late afternoons.This results in eating,sleeping at different times each week.This prompted me to see the gp who was only a locum(no disrespect).She put me straight onto 1x 1mg Ropinirole before bed.As I was still struggling she uped it to 2.The problem is that ropinirole makes me very sleepy and couldn't take at work due to machines and driving home.I went back to gp and she then prescribed 1 or 2x 100mg gabapentin as well as the ropinirole.I must say nothing was explained to me about possible repercussions from the ropinirole.Also I didn't have a clue about what augmentation was/is.You have described exactly these symptoms and what is happening very closely to my experiences.I cant wait to see my gp again with all this information I now have.I dont know if your a gp or have been through all this yourself.I really appreciate the replies and inside info.Just for the Magpie,I assume your in Newcastle cos I'm a mackem from Washington.

[Hidden in reply to Lambretta175]

If you sometimes did nightshifts (and sometimes didn't) having RLS would have been a distinct disdvantage for you and doing this would have a distinct disadvantage for your RLS.

RLS is a "circadian" related disorder. Various regular changes take place in our bodies over (roughly) a 24 hour cycle. These circadian rhythms are regulated by being exposed to light and dark. Originally the levels of many substances in the body, including neurotransmitters rose and fell according to when it was night or day. Since the invention of the electric light bulb, this has changed somewhat. It's now when we CHOOSE to expose ourself to light or dark.

One of the cycles we go through is obviously when we sleep and when we wake. When you work nightshifts you are awake and in light at night and sleep in the day. Your circadian rhythms can adapt to this change, but it takes a few days.

If you work day shifts, all your circadican rhythms adapt to wake-day, sleep-night. When you change to night shifts, it takes a few days to adjust to sleep-day, wake-night. If after a few days you switch back to day shifts, you have to re-adapt to wake-day, sleep-night. Then you switch back to night shifts. In effect then, your circadian rhythms may have to be constanty re-adapting to your sleep wake pattern.

One of these rhythms is your dopamine level, which normally falls in the night - dark-sleep part of the day. Because a part of the problem with RLS being a dopamine dysfunction, RLS is at its worse when dopamine levels are low, i.e. usually at night.

If you adapt to doing night shifts, your dopamine levels may be at their lowest during the day, so your RLS may be at its worst then.

If you don't work night shifts, then, your RLS will be worse at night so it's appropriate to take an RLS medicine at night. (especially a dopamine agonist!) Preferably at the same time every day.

If you're adapted to night shifts then it's not appropriate to take an RLS medicine at night. However, it's not really appropriate to take it during the day either.

In other words - you're screwed!

Some people with RLS find it impossible to do night shifts, and if they do, it makes their RLS worse.

I suffered from augmentation myself, for a few years due to taking another dopamine agonist - pramipexole. When I found out what it was and saw a GP, she had never heard of it.

It wouldn't surprise me if your GP hasn't heard of it either.

I stopped taking the dopamine agonist and now only take gabapentin. Things are so much better.

[Lambretta175 in reply to Hidden]

Thank you very much Manerva.Sleep well!

[NellieK]

Definitely not psychological. Always wondered what rls was: neurological? All I know is that, for me, it feels like ants crawling on my bones. Here's proof it isn't psychological: I had a colonoscopy and was put under a "twilight" sedation (not completely out). When I came to, the anesthesiologist said to me, "You didn't tell me you had restless legs!" Apparently, I gave him a few good kicks!

[Zadoc]

I expect you have tried these but just I case..Bach Rescue Remedy Night, you can get the capsules in Superdrug...have a warm bath with added lavender essence, not a bubble bath, lavender oil or bath additives put lavender oil drops on your pillow. The idea is that these help the body relax...apologies if you know all this a,ready, I am a newcomer to the group

[Bftalbert]

Try 1/4 to 1/2 cup of coffee, or 1/4 to 1/2 tablet of caffeine. I know it sounds counterintuitive, but it works

[kirash]

Hi. I was at my wits end with RLS. I had some relief taking 30mg codeine before bed. I have tried 600mg if magnesium a day. The only thing my doctor suggested was ropinirole but I was very reluctant to start taking it. Ive tried cutting out gluten and dairy and clean eating with some success. Someone on the forum suggested CBD oil. I recently managed to get hold of some and it has been fabulous. Restless legs have pretty much gone. The odd little nibble. May be worth a try.

[Spudvar]

I was and still am, to a lesser degree a fellow sufferer. Jerking, twisting, pain not only at nights. Walking always stopped RLS so I was at nights in the streets, sometimes in the rain and cold. Tried various medication through the years which had very little effect. I then found Gabapentin and a doctor recommended starter does of 300mg three times a day, morning, noon and night. RLS stopped almost immediately. I am now taking 300mg at night only, to keep RLS at bay. I have been given by a doctor Lorazepam 1mg (lowest dose you can get) should I be unable to sleep. to be used occasionally . Doctor also said; if not asleep after laying in bed for about 30-40 get up make cup of tea and biscuit /nibble if required, don't sit down but walk around for a few minuets , then go back to bed.

Obviously that was my experience and I am happy to say after all those years of TURMOIL it works for me.

Good luck

[Midnight-Blue]

I definitely can empathize (I hope that’s the word I want!) with you. I have gone without sleep for 24hrs because of RLS. I hate having them & it’s not a psychological problem - its a physical problem that is prevalent with people who have MS as well as others. So what do I do when it prevents me from sleeping? I clean the kitchen, sweep floors, go through my magazines while doing leg exercises - anything to not only keep me busy but hopefully stop RLS do I can sleep. (I also take prescriptions.)

[finder1234]

Hi magpie and fellow sufferers, Everyone is different ...no one size fits all! What works for me ...said this before many times is... DONT EAT/DRINK ANYTHING SWEET BEFORE BED ,IF AN ATTACK COMES ON DRINK A BOTTLE OF INDIAN TONIC WATER by Schweppes (CONTAINS QUININE). YOU CAN ALSO TRY (IF AV) HIGH THC CANNABIS BUD OR MABY IN OIL FORM (WHATEVER WORKS FOR YOU). Keep trying different things until you win . Whatever you do try and not take the big pharma track....with anything. I WISH YOU HAPPY HUNTING ! from oz.