3rd attempt…. for a good reason!I have added important facts.

[Kakally]

3rd attempt.. but only because I feel sooo strongly about the subject… I will not be doing it again any time soon unless I get helpful responses or alternatively get arrested…!😱

———————————Dear Dr. Davenport ,You kindly saw me today in order to help me with advice for my RLS for now and for the future.

I also asked you for general advice for my future treatment in case certain drugs are forbidden to be prescribed.

I particularly went to you as you are an eminent neurologist and head of the Association of British Neurologists and therefore your opinion would have ‘clout’ if I needed help in the future.

I also asked you about

1. please would you encourage inclusion of RLS in the RCP core curriculum ? And

2. Please ask for inclusion of iron therapy as first line treatment for RLS ?as both these questions are important for my personal RLS treatment journey too…

Fortunately:

1.You agreed with me that RLS should be included in the core curriculum.—However it wasn’t completely clear as you said “it already is included” , though I cannot find it in the Royal College of Physicians core curriculum.

Or only if it is being ‘lumped together’ with movement disorders e.g. PLMD , periodic limb movements disorder. Of course, RLS is so much more than night time PLMD . There is an association, but RLS has at least 4 more other genetic associations, plus so much more than limb movements, which for most of us are just reaction to the discomfort, namely the torturous , sensory discomfort which can be DAY and night and continuous for many hours and causes desperation and suicidal thoughts in so many sufferers who have moderate and severe symptoms.

It is disingenuous at the least to flippantly say RLS is a movement disorder as we know it falls between classifications of Sleep disorder , Pain Disorder and Movement disorder.

To say it is ‘included’ in the written core curriculum simply by the one word movement disorder is blatantly unfair . I’m sure you will agree with this.

Interestingly RLS IS included BY NAME in the curriculum for the Royal College of Paediatrics and Child Health.So mentioning it by name in the adult, RCP version would be very helpful if indeed it isn’t genuinely there already……

2.You said that iron therapy IS first line treatment, which is fantastic but doesn’t seem to be backed up in the RCP, NICE or ABN guidance for treatment.

I’m not sure if you were meaning the algorithms mentioned below, or something different.These fortunately are clearly included in Dr. Jose Thomas’s Gps’ guidance as the‘Aneurin Bevan Healthcare algorithm for treating RLS in South Wales’.

My bottom line view is the following and I hope you would kindly write back to me and give me your view as to why this should or should not take place

:-Doctors please can we stop wasting time , money and suffering…

Yes, definitely try oral iron for those whose ferritin = < 50ug/L for 3 months or possibly a bit longer.

Use iron infusions first line for those whose ferritin is = or >75ug/L (plus other parameters are ok TSATs etc)

TIME because we will relatively quickly find out who are the 60% ‘iron responders’. If you are one, then great, get on with iron plus any adjunctive treatment that might be required if iron doesn’t remove symptoms completely .If the person is one of the 40% non-responders, then don’t waste time taking oral iron for years and years pointlessly.

MONEY… because iron infusions are are relatively cheap and safe, so other more expensive drugs may not be required constantly!

SUFFERING…because all these years of oral iron , other drugs. Dopamine Agonists and possible torturous augmentation caused by the DAs, are reduced and a more suitable treatment is found more quickly .Yes there will always be the person whose RLS is refractory to treatment but then the secondary care doctors can really use their expertise, brains, knowledge and hearts to work out how to help these people.

WHY DOES IT SEEM SO HARD FOR MANY OF US DOCS TO UNDERSTAND THIS?

Anyway, I am much encouraged by your positive comments and it gives me confidence for my personal, future RLS management journey

I would really hope you would find the time and courtesy to respond to my very valid queries about RLS as I am a colleague who has 2 recent good publications about RLS.

If you are unable to help with the above, please let me know who I can contact to get the very necessary job done,

Thank you again for your help with this.

I shall forward my hopes and comments and your helpful responses to XXXXXX XXX a director of Education at the GMC, who is interested in putting forward RLS for the MLA map etc next year .

Kind regardsXXXXXXXXXXXXp.s. I have written to you 3 times before but received no response from you .

I am sure that this time my email will reach you so you will be able to write back,Thank you again

[Joolsg]

I can feel your frustration and anger.I completely agree with you. We lost one member in April because of appalling lack of knowledge. Her neurologist felt 'helpless' and referred her to a sleep clinic when she was augmenting on dopamine agonists. She died from a bleed on the brain after a fall while exhausted, walking off the severe RLS.

Shumbah had set up an Instagram account because 3 or 4 of her RLS contacts committed suicide!!!

The brick wall is being built higher and stronger by Neurologists and GPs.

They won't listen.

They bristle when challenged.

Augmentation is a ticking time bomb and many more RLS patients will die because of the lack of training, teaching and the refusal to update the NICE and NHS guidelines.

[Pippins2 in reply to Joolsg]

Joolsg ,I am going back some years but doyou remember the post by Admin about a lady who went abroad for legal euthanasia and her reasons were she could no longer live with severe restless legs and arthritis? -Pipps x

[Kakally in reply to Pippins2]

Oh my goodness…. Though it doesn’t entirely surprise me 😔😔😔

[Bramble2000 in reply to Joolsg]

With respect, please don’t use the term, “committed suicide”. Suicide isn’t illegal so she didn’t commit anything, rather she took her own life. Thanks

[Joolsg in reply to Bramble2000]

Point taken.

[Cobobay in reply to Joolsg]

This is so sad and does make us angry. I am so so lucky as I told my lovely GP on Friday. Thanks to the help I've received on here and the support my GP has given me supporting what I am telling I have been advised to take and when, I feel I'm looking at the light at the end of the tunnel. I wish you all had one like her, but I suppose in a very small way we are teaching her too perhaps about RLS maybe.

[Kakally in reply to Cobobay]

Yep you are teaching her 👏👍👍

But so glad she is listening 👍🥰

[SueJohnson]

I assume by the XXXX's that you haven't already sent this. If not can I suggest that you say try oral iron for those whose ferritin = < 75ug/L. Also that you add iron infusions if TSAT is < 20%.

[Kakally in reply to SueJohnson]

Hi Sue,

It is sent… the 50-75ug/L are ‘in between’ levels and can be discussed on individual patient basis . Infusion should be allowed on anyone if their ferritin is reasonable (and that needs to be discussed at the Mayo clinic who are otherwise ~faultless). And as long as the TSATs is <45% then it is safe to do so (assuming other parameters are ok). That seems to be the case to me anyway. <20% just means they’re in an even more iron deficient state so wouldn’t/shouldn’t be questioned by the docs

[Baz33 in reply to SueJohnson]

What is TSAT please ..my ferritin is 32 no meds are responding, I'm.convinced my iron is driving my symptoms

[SueJohnson in reply to Baz33]

TSAT is shorthand for transferrin % and is the ratio of serum iron to total iron-binding capacity.

[Kakally in reply to Baz33]

your extremely low ferritin could well be driving your symptoms!

TSATs measures Joe much iron is bound to a carrying molecule. If it is >45% then it is beginning to move towards being saturated:swamped with iron. If this happens then iron overload can occur and iron is deposited in the liver, heart and brain. This would be bad obviously and needs to be monitored with the blood tests.

[Kakally in reply to Kakally]

TSATs measures how much…. (Not Joe much) sorry

[Baz33 in reply to Kakally]

Thankyou .

[Hidden]

I commend you and shumbah for all the effort both of you are doing for us all. I recently referred to an out of hrs doctor at my hospital as no one was available to speak to at my surgery. I need some advice as my meds were not working. I got told to take Tonic water or Piriton we have a long way to go in educating doctors if that what we get as a suggestion still in this day and age. God forbid. 🙁

[Kakally in reply to Hidden]

Dear oh’ dear . It is so soul destroying when you ring when you’re in dire straits and they just cannot give ANYTHING… I do hope you are having a better time with your RLS now🤗

[Joolsg in reply to Hidden]

Oh God, it really is dreadful.That doesn't surprise me, sadly.

You are highly sensitive to so many meds, but I'm sure an iron infusion would make a huge difference.

I really hope you manage to get one soon.

X

[Hidden in reply to Joolsg]

Still need to get my bloods done yet. Was trying to stabilise my meds first so i can actually get to a doctors. I had a panic attack the other day everything had got on top of me lack of sleep meds not working etc. I eventually got to talk to a doctor at my surgery she has prescribed me Lorazepam first night i slept almost all night woke up twice. Can’t remember the last time i slept that much a night. Also i am getting off the codeine that wasn’t working

[Kakally in reply to Hidden]

I’m so glad you got a really good night’s sleep. It is such a rare and wonderful luxury . I don’t know much about lorazepam except that it would probably be wise to take them only occasionally in order to avoid some dependence. Getting rid of the codeine is brilliant though 👏👍

My very best wishes 🤗

[Hidden in reply to Kakally]

Only got 14 of them. and to take half a pill at night. After that i will have to find out where i go from. I have been through all the meds available and had to come off them all i have a low tolerance to them all which is why jools suggested a iron infusion never know it might help

[Kakally in reply to Hidden]

What is your ferritin level?

You have a 60% chance it will improve things significantly. Even if it doesn’t get you almost completely better , it might help enough to let you take another medication (preferably NOT a dopamine agonist!!!😱) which could then help . All the best 🤗🤗

[Hidden in reply to Kakally]

Thank you. 😊

[Kakally in reply to Hidden]

And I mean a very low dose could help. I too can only take the lowest dose of everything else I’ve tried in the past. I fortunately am helped significantly by the iron infusions.

[SueJohnson in reply to Hidden]

I wouldn't worry about dependence. After all if it works, who cares. And you can always come off them slowly. I took it for 7 months for something else (2 tablets). Lunesta which is what I take every night now is less likely to lead to dependence or tolerance.

[Grammieof4 in reply to Hidden]

Is there medical marijuana where you are? I alternate a gummy of CBN/THC one night with the lorazepam on the other. I get up once in a while to go to the bathroom and otherwise sleep all night.

[Kakally in reply to Grammieof4]

I’ve tried the stuff available in U.K. shops plus smoked pot medicinally with my son as an experiment for a while specifically for my RLS . We had a lot of fun but none of it helped my RLS at all which was a shame 🤪😃.

[Grammieof4 in reply to Kakally]

I don’t smoke marijuana- my husband died of lung cancer so any kind of smoking is a no no for me. These are gummies with the cbn/THC or CBD/THC infused in them.

[Kakally in reply to Grammieof4]

I am sorry.

I will try again with the gummies that you recommend

thank you 🤗

[Grammieof4 in reply to Kakally]

I don’t know if you will be able to get the medical dosage.

[Hidden in reply to Grammieof4]

It’s illegal here in the UK. 🙁

[Grammieof4 in reply to Hidden]

It’s been a lifesaver for me. Wish you all could.

[Kakally in reply to Grammieof4]

Gosh! If you don’t mind, please tell us more about how it went for you sat the start, side effects, dosage etc. snd who prescribes/gives it to you… and is it one month’s supply at a time ,

I really would like to try very low dose methadone in order to get rid of my other meds…

I’m actually going to bed now and if you reply I will read it and reply in the morning.

[Grammieof4 in reply to Kakally]

In Maryland you apply to the Maryland Medical Cannabis Commission and your physician has to certify that you qualify/need it. They issue you a cad. There are dispensaries that you walk into and they keep your Card & certificate on file. You can get pretty much any quantity you want of the gummies. You have to pay cash. I get gummies called “Snooze Bites” which are 20 in a bag for $30. I’ve never had any side effects.

Unfortunately I also have very bad nerve pain due to another issue and take a lot of Gabapentin for that which is also for RLS. I’ve had iron infusions too because my ferritin drops annually but because I have such inflammation in my body the iron mfusions don’t help as much as they should.

[Kakally in reply to Grammieof4]

Gosh! Thank you for that.. wow!

[Grammieof4 in reply to Kakally]

Welcome

[Kakally in reply to Hidden]

I know and it shouldn’t be . Given in the correct way , even if it means you can only get one goes a day which they watch you swallow to prevent overdoses or abuse …

It can work well but can make people very dozy … plus once you find a good dose for you , tolerance doesn’t appear to be a problem…

There is this massive and mostly righteous fear of narcotics at present with so many young people dying😢

[Joolsg in reply to Hidden]

Elisse, it's no longer illegal. It's available from.private clinics, not the NHS.Sapphire Clinic prescribe it for RLS.

[Kakally in reply to Joolsg]

Really! Great, where are they please Joolsg? I must try to find them to at least chat to them in case things get v bad for me in future years… and it could become an option

[Joolsg in reply to Kakally]

app.sapphireclinics.com/pro... is the clinic I use. My sister also. Cannabis really helps MS spasms and improves sleep.

It didn't stop my RLS, but it did knock me into a deep sleep for 3 hours before the RLS kicked in. It also helped during withdrawal from Ropinirole.

I only use it occasionally now for MS pain and spasms because Buprenorphine completely covers all my RLS.

[Kakally in reply to Joolsg]

Thank you

[Hidden in reply to Joolsg]

Of course yes private is the way to get it. Did you see the news on BBC about this. ? Only 5 people have been allowed to get it prescribed on the NHS. after 5 years of it being made “legal”.

[Joolsg in reply to Hidden]

Yes. So many children with severe epilepsy being denied the treatment that helps them. So upsetting. If you're wealthy, fine, but otherwise, there's no hope.

[Ronniebongo in reply to Hidden]

Hi .. I’ve started taking codeine this week with great results, I have had a few headaches though , I only took 15mg at 11pm last night and it kept the rls off til 5am but it usually stops about 6am so I didn’t take anymore, have you had a bad time on the codeine? I suppose like everything, some things will work for some and not for others with rls ..it’s really helping me so far to sleep 😴

[Kakally in reply to Ronniebongo]

Brilliant! I’m so glad you are having a much better time. Yes it is interesting how somethings work for some people but not for others. I guess my only concern is the possibility of some addictive properties of codeine . Yes it does also constipate and can have a few other side effects too.

[Hidden in reply to Ronniebongo]

The codeine had stopped working i was taking 15mgs x two before bed then it would wear off so would take the same again after 4 hrs but still didn’t work. I have just weaned off it the last few days

[Kakally in reply to Hidden]

It is so terrifying when you feel the options are disappearing. But as LotteM says we hope the iron infusion helps either massively or at least enough for you to then try something new or go back and revisit the previous medications , which then could work as the iron will have kick started the improvement and they won’t have to do the ‘whole job’…🤞🤞🤞🤗

[Ronniebongo in reply to Hidden]

Well it’s helped me sleep but again today I have a horrible headache, if you read my posts I’ve just got years of headaches under control with HRT , paracetamol and other tablets never clear my headaches only sumatriptan works but I’ll be spaced out all the time which I don’t want ! Can’t win ☹️If this continues I’ll have to re assess taking the codeine..

[Kakally in reply to Ronniebongo]

It’s so difficult as you become the expert on what helps you but at the same time there are the problems with side effects and interactions between medication and also the RLS . Have you asked to be referred to the ‘Pain Clinic’ in your area? They could be very helpful to rationalise the treatments you need at anyone time and they often seem to genuinely care…

Good luck with the minefield. I’m sure there is a way through 🤗

[Apricotjam in reply to Ronniebongo]

Codeine (8mg) works a treat for me too!

[Ronniebongo in reply to Apricotjam]

Yes I stopped the 15mg codeine for two days as awful headaches, as id had sumatriptan in the day my rls was bearable , last night at work my rls was really bad so I took the paracetamol and codeine combined tablet , 8mg and no headache today 🙏 and it stopped the rls for me to sleep .. I’ll have to stock up on those now 🥴I have a mini chemist in my kitchen cupboard at the minute 😬

[Kakally in reply to Ronniebongo]

👍👏🤞🤞🤞🤗

[Apricotjam in reply to Ronniebongo]

Great! Pleased to hear it!

[LotteM in reply to Hidden]

Dear Elisse, I am so sorry to read that yet again you have to adjust your treatment of the RLS. With uncontroled symptoms, additional panic attacks and just basic lack of sleep, I imagine you just entered and a steep downward spiral. Is indeed iron - by means of infusion, I am quite sure, but don't remember, you have taken oral iron the only 'standard' treatment option left for you? I hope not. But more so I hope you can get an iron infusion and that it will work for you! 🤞🏼🤞🏼🤞🏼 Meanwhile, stay sane!

[Hidden in reply to LotteM]

Aww thank you Lotte. I am

having a bit of a mare. right now. As soon as i can get to my doctors i will be getting my bloods done including ferritin one of the doctors i spoke to wants me to get them done. Jools suggested i ask for iron infusion and i will be asking for it just hope he agrees. It’s hard to prescribe a med for me as bern through them all and my tolerance to them is low In fact the last doctor asked ME what i can suggest to her what i want to take ! lol

[LotteM in reply to Hidden]

Hi Elisse, yes, I am well aware of your low tolerance to meds. I remember that well from your (much) earlier posts.

Make sure you bring what you think is the best summary of the iron advises for RLS. Either excerpts of the Mayo Clinic Proc paper (or the full paper, I like their boxes with summaries of each treatment step). Or maybe rls-uk has a good and concise overview? We just have to assume the doctors may not know about the treatment and/or its details.

Hope you will get to your doctor soon and get a positive and helpful response.

[Hidden in reply to LotteM]

Thank you Lotte yes i will be letting the doctor know if those details on iron.

[FlintHills in reply to LotteM]

Good luck getting in to the Mayo Climic.

[Hidden in reply to Joolsg]

I have had 2 iron infusions and my ferritin level is now 900, but it has made no difference to symptoms......very distressing. Have had another couple of days from hell with no sleep since saturday night and I want to chop my right leg off.....I can't see a future for me. My grandchildren that I haven't seen for 3 years are coming over after xmas to stay with us and I can't get excited about it....instead I am panicking about how I am going to cope with them in the house as I cry and wander around and want to die.

[Kakally in reply to Hidden]

Dear dear Kathandkell,

I am so so sorry you are having such a terrible time . I cannot imagine how you are feeling. I cannot remember or maybe just don’t know if you are in the U.K. . If so , maybe it would be worth trying to see Dr. Jose Thomas in Newport who apart from having an interest in iron for RLS, which unfortunately is no help to you, but I think he sounds to me like a genuinely empathetic, forward thinking neurologist who might think of some possible magic for you. Perhaps methadone could work for you or something else. I know doctors are very afraid of methadone because they come into the ‘addict’ conversation. But actually they can be a fantastic drug when used properly in a medicinal, common sense ,low dose way .

I urge you to keep going and fight for real ‘care’ and some HELPFUL treatment . Please let me know how you get on and when you eventually have a wonderful time seeing your grandchildren in the near future We are all 100% with you and send our real LOVE 🤗❤️

[Hidden in reply to Kakally]

I live in Tasmania Australia........very backward in treatments here.....the pain specialist I saw recently just sent a letter to gp saying I was a drug addict because I requested trying subutex......I am desperate for something to work.....if I can't find something soon I'm afraid I can't live like this

[Kakally in reply to Hidden]

Oh dear, yes I did read your story but forgot to save it and couldn’t quite recall your name.

Are you able to Google pain specialists in Australia and/or find someone in this forum from Australia who knows of any empathetic doctors ? . Are you able to afford at least one private consultation either face to face or online ? I know that some of us, or at least me would give something towards you getting to speak to a good doctor.

Also do you have the Samaritans organisation or similar in Australia? They have helped me in the past when I was at my lowest ebb . Even though they didn’t have a clue about the condition , they listened so well and lifted me just enough to keep me going to fight another day 🤗❤️

[Kakally in reply to Hidden]

or maybe even go and visit a drug centre and tell them your story and discuss whether they would help you with methadone —- even if it means only being given 1 pill at a time given to you by them or your family doctor

[Hidden in reply to Kakally]

Have tried asking for methadone, they won't do it......the specialists are too busy looking after their own arses instead of looking after their patients......I give up

[Kakally in reply to Hidden]

if there is a private way you can call me , I would give you my number for another idea I have…

[Hidden in reply to Kakally]

You can talk through PM on here

[Kakally in reply to Hidden]

Oh I must work out how to that. I have to go to bed now:/helping my daughter who has some problems t now. Tomorrow morning I will try Kathandkell xxx🥰

[Hidden in reply to Hidden]

Hang in there. i don’t know how many members on here are from Australia i do know Shambah is. If you do a post a d ask if any members are from Australia you might get some one who can give you a name of a doctor near you that can help. Worth giving it a try.

[Hidden in reply to Hidden]

Shumbah is helping me.....she is marvelous

[Kakally in reply to Hidden]

Oh ! That is great xxx

[Hidden in reply to Hidden]

Wonderful 😊😊😊

[Joolsg in reply to Hidden]

I am so sorry to hear this. Iron infusions don't help 20% of us. I'm one of them.Did you contact the sleep specialist in Hobart I told you about?

Dr Brendan Yee, an Australian researcher on RLS has suggested you contact Dr Gaurie Palnitkar in Hobart.

I don't know if she practises there full time, but you could look up sleep clinics in Tasmania.

[Hidden in reply to Joolsg]

will do it today

[WideBody in reply to Hidden]

I got a prescription for quinine! I never filled it or even considered filling it.

[Hidden in reply to WideBody]

And so it goes on 🙁

[Baz33 in reply to Hidden]

Tonic water for the quinine...no idea how much you have to drink .

[Hidden in reply to Baz33]

Tonic water is not used for RLS unfortunately some doctors still thinks it works for RLS. They think the quinine works for RLS. where as it works for cramps. The FDA has banned quinine only to be used for malaria quinine has a health warning against it think it’s heart problems?

[Jumpey]

Thank you for your advocacy on behalf of our community. Can I ask where you located Dr.Jose Thomas' guidelines?Do you have a link? I'm on the waiting list to consult with him.I'm so lucky to live near his clinic.

[Kakally in reply to Jumpey]

I cannot find the link but hopefully Joolsg will send it to us all.. pleeeease.. dear Joolsg.

I’m having a bit of a meltdown with my computer just now.., I am sorry

[Joolsg in reply to Kakally]

I'll sort it when back in London. Driving back from another emergency visit to the Midlands.

[Kakally in reply to Joolsg]

Thank you dear Joolsg

[Joolsg in reply to Kakally]

I can't seem to attach the files here Kakally. I can send them by email but my phone won't let me copy and paste or copy the link to this site. My macbook is playing up, but I'll keep trying.

Jools

[Kakally in reply to Joolsg]

I had exactly the same problem

[Joolsg in reply to Kakally]

I will ask someone I know with better computing skills how to attach a pdf to this forum. Oh to be younger and computer savvy!

[Kakally in reply to Joolsg]

I know…🤪🤪

[Helthom]

Hi. I have found the information above very helpful thank you.

I have recently started taking Ferratin. I am on 2.5mg Ropinerole at night which causes my RLS to become really bad when I first take it but after a couple of hours it works, but only for a few hours. I am permanently exhausted and am unable to rest during the day to REstless legs and sometimes arms. I am aware that the maximum dose of Ropinerole is 4mg daily and am worried about having to increase my dose and also about augmentation. Is it possible to stop taking Ropinerole if ferratin levels increase. I am desperate for a resolution as my RLS is becoming more severe.

Thank you in advance

[Kakally in reply to Helthom]

Dear Helthom, it is a tightrope sometimes having to treat ourselves and balance what the docs say with what we are going through and what expertise they have or haven’t got. Plus it is a very tricky disease anyway. I think SueJohnson and Joolsg are the masters of weaning off or changing treatments in particular when Dopamine Agonists are involved. I’m sure they will help you on your way with the best plans… genuinely best wishes🤗

[WideBody in reply to Helthom]

If your iron is low. It certainly won’t help. A couple things you probably already know.

Take iron at night about 90 minutes before bed. Take iron on an empty stomach, iron binds with the proteins in your stomach. Take iron with Vitamin C to aid absorption.

Low iron and low vitamin D are correlated. Vitamin D blocks Hepcidin. Hepcidin blocks iron absorption.

It has been harder for me to raise my Vitamin D than to raise my iron levels. I tested last week at 64, up from 26. I have been taking 20000IU almost daily for years. I also spend hours outside everyday in the sun, but I live on the 45 parallel.

Here’s a good link if you can’t sleep

sciencedirect.com/science/a...

[SueJohnson in reply to Helthom]

Welcome to the forum. You will find lots of help, support and understanding here.

It sounds like you are already suffering from augmentation if you are having it in your arms. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

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. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). 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. 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 split the doses with pregabalin) Most of the side effects of gabapentin or pregabalin 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. 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 don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." 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...

You say you are taking ferritin - I suspect you mean iron. But 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.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. 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, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse

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.

Gabapentin also helps fibromyalgia.

[Joolsg in reply to Helthom]

I do know several people who are med free after augmentation on Ropinirole and after receiving iron infusions.However, your issue now is augmentation. You clearly have it. Do NOT increase the dose, it will make your symptoms much worse.

Reduce Ropinirole by 0.25mg every 2 weeks. Wait for increased RLS to settle, then reduce again. You may need a low dose opioid and/or cannabis to deal witj withdrawal symptoms.

Just search SueJohnson and click on replies. All her replies contain detailed reduction schedules and advice on iron trsts and supplements.

[Perhapslove]

Dear Kakally,

As we say in the USA, Kudos to you for your efforts to get to the heart of the RLS problem which is the education of the physicians. Here in the US, most people see the primary care physician, our equivalent to your GPS I believe. My RLS treatment was sadly treated with the DAs for too many years before the augmentation kicked in and it was like hell on earth. To make that worse, my current PCP did not believe me that Gabapentin should be used to relieve the aumentation. She was completely ignorant of the need to check iron levels. I was finally blessed to find a Sleep Medicine Specialist whose training is in Pulmonology. She was treated me successfully using the Mayo Clinic Algorithm with tremendous success. I have asked her to please, PLEASE, hold a continuing education forum for the PCPs in my region to bring them the same information. I will be following up with her next month and I hope to find that this is already happening. If it has not yet been initiated, I will take further action. I am a retiree with a lot of rime to devote to this. I truly hope to bring this issue to the attention of the PCPs who are usually the first to encounter RLS sufferrers. Hopefully, we can get the to avoid augmentation by testing iron levels initially and to treat avoid DAs where possible and prevent the nightmares of augmentation. In my career as a medical technologist, I worked with a pathologist who frequently reminded us that the Hippocratic Oath charges physicians to "Do no harm". So my approach is to point out that the PCPs are not fulfilling that oath with the current RLS treatment protocol. I an encouraged by your post and hope to achieve something similar here.

[Kakally in reply to Perhapslove]

Dear Perhapslove

I totally agree with all you have said . As someone who had similar experiences (probably) with the long torture of augmentation, the docs should definitely pay heed to your paragraph including …

‘…I worked with a pathologist who frequently reminded us that the Hippocratic Oath charges physicians to "Do no harm". So my approach is to point out that the PCPs are not fulfilling that oath with the current RLS treatment protocol…’

As a medic myself it was always in my mind to “do no harm” and subsequently to be treated so badly as a time waster , drug seeker, hysterical woman, ‘heartsink’ patient was mortifying to the extent that I paid a lot of my hard earned savings to put myself into drug rehab to stop being a mad druggie… it was actually a very special experience being with people who have been treated in many bad ways during their lives and were now trying to help get themselves better . However It did nothing to help my need for some medication, as I had not had iron infusions at that time. I am very fortunate to have benefitted significantly from such infusions since then .

I am so pleased that you have found this excellent Sleep Medicine Specialist👍👏.

I often quote Prof Chris Earley and the wonderful late Prof Allen and of course the Mayo Algorithm to anyone and everyone who will listen… and wish that the U.K. had such interest and research going on.

Fortunately there is a fantastic neurologist called Dr. Jose Thomas at Newport in Wales who , I think , always assesses and sorts out iron status , either with oral or I-v iron as appropriate.

Plus there is an anaesthetist called Dr. Andrew Klein in Cambridge, who will give iron infusions for RLS, I think they are being used more frequently these days for people with cardiovascular problems and preoperatively.

It seems that the most senior neurologists in the U.K. don’t believe in iron at all except for serious iron deficiency .

And worst of all.. they don’t believe it is a disorder worthy of being taught to medical students, GPs or trainee neurologists.

Adding RLS to the core curriculum HAS to be where any solution begins….

It is very interesting hearing your experiences and your views across the water and I wish we could rise up as a World RLS Community!!!

Please excuse my rant..

Best wishes🤗

Go WRC..! 😂👍👏👏

[Greekstudent]

A splendid letter, which one can only hope may elicit a reply. Fortunately not all GPs are as resistant to the learning process as this one. My own GP was quite glad to prescribe a switch from Pram to Gaba, and was aware of the significance of my Ferritin level (133, as it turned out). But we do need all the support we can raise from a fully aware medical profession. Have you thought about publishing your letter (and any reply) in the RLS Soc newsletter?

[Kakally in reply to Greekstudent]

That letter was not to my GP but to one of the top 3 or 4 neurologists with an interest (🤪) in education in the U.K. !

I have certainly sent it to him and cc’d in a few other top guys (yes , mostly men, though one female I know of has already demonstrated disinterest to one of our medical RLS champions in the country ,

So disappointing. I am awaiting reply and discussion…..

I do hope your RLS is a lot improved on the GABA or moving in the right direction at least 🤗

[RLSLADY]

Wow ! What a letter, fantastic.

Your descriptions of the utterly horrific symptoms we endure nightly gave me goosebumps,reduced me to near tears, it's so very true and fantastically worded.

I hope you get a response.

Thank you.

[Biscuitface]

Hi KakallyShumbah is trying to contact you. Please see her recent post

[Kakally in reply to Biscuitface]

Thank you

[Kakally in reply to Biscuitface]

I have replied 🤞😃 (but wasn’t able to be much use I’m afraid 😔

[Biscuitface]

Brilliant letter