My RLS is probably worse recently than it has ever been. This past few weeks have been terrible. Last night for example I took my Pregabalin 300mg at 7 pm and by 7.30 I was walking the floors with the restlessness in my legs. I took my Kratom, red borneo, about 8.30. It didn't ease anything. I continued walking to try get some comfort until 3 am when eventually I was able to go to bed to get 3 hours sleep before getting up at 6 for work.
This is really getting to me now, I don't know where to go to from here. No way will my GP contemplate giving me anything stronger, I had to see a consultant privately in order to get my GP to prescribe the Pregabalin.
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To be honest my diet has improved considerably this past couple of months. In order to shed a the weight which I blame Pregabalin for causing me to put on, I'm eating a lot healthier, I have cut out all sweet foods and high fat foods, cut down on alcohol etc. Really since augmenting on Pramipexil a year or two ago I had very little success with Gabapentin and now Pregabalin.
I’m on Pregabalin and although I’ve increased my dose to 2 x 100mg a day it’s not really working. I firmly believe taking Tramadol, initially for another condition and then being stuck taking it for 3 years as my RLS was hell without it, has caused permanent damage to the dopamine receptors in my brain. I’ve had RLS my whole life (now nearly 60) and it was only ever in my legs and had settled down to just troubling me for a few days a month. As I was weaning off Tramadol over 2.5 years ago I found I now had it in my left arm, neck and the base of my spine. So permanent damage as it’s still like that. Pregabalin has probably helped a little, but I still have symptoms most every night.
It’s interesting what you say about changing diet to lose weight and cutting out alcohol, as I find doing that make my RLS worse. Some people find alcohol triggers an attack, but I find it stops the symptoms about 95%. Someone on this thread has mentioned that augmentation can cause permanent damage so Pregabalin won’t really help. Looks like that might be what’s happening with you and me?
I'm reading the responses to your post with interest as your circumstances mirror mine almost exactly. I too have a fairly healthy diet and have been trying to loose a little weight (presuming Pregabalin to be the culprit here) although a drink in the evening while I'm in the kitchen is proving to be one thing I really look forward to! This isn't sensible .... but sometimes it's such a struggle to get through each day/night I feel doing without the one small pleasure is too big an ask. I'm trying to pluck up the courage to ask my GP for Targinact (or at least point me in the right direction for it) but I know before I go that the answer will be a big fat no. I'll be posting if I have any success - we've all got to keep trying. I don't know what I'd do without this site - I used to think (and was made to feel) I was the only one with this dreadful condition but the fellowship here has saved me from a very dark place many times. Anyway, good luck and very best wishes in your endeavor to get more help.
So sorry that you are going through this. Have you started any new medications for other conditions which may be triggering symptoms? And is your ferritin level stable? X
Have you had your iron levels checked? Ferritin needs to be well over 100. Normal for most people is around 50. We need a much higher level. If taking oral iron, take on alternate days or nights at least 2 hours after and 2 hours before food, with effervescent vitamin c. Have you tried reducing sugar in your diet? Try hot bath or shower spray on your legs then straight to bed. Compression socks help as does elevating your legs against a wall for 15 minutes or so before bed. Magnesium spray on your legs may also help. Good luck
It’s great to see your recommendation to elevate the legs against a wall for 15 minutes! I agree it’s very helpful! I find myself doing it in the middle of the night when I wake up with RLS symptoms and amazingly it stops and I can go back to sleep.
I’ve had my legs in a sling the temptation to put the sling around my neck is unbelievable got to be more please help us the only people who read this is the suffering
Yes great tips. I find stretching my legs out one by one behind me so the hamstrings are stretched and also raising and lowering on tiptoes seems to help as well. And like you I use a magnesium spray if it's early evening and it starts seems to help a bit. Mine is just a sprayer with some magnesium in and water
No medical knowledge but I share your pain I think 300mg of pregabalin is nothing, I would have thought it should be more? I have found a balance most nights now thank god!. Single meds did not work for me. But with very strict 8pm, 9pm, 10pm doses of 1mg ropinirole and 300mg pregabalin each of those times I find comfort most nights of I go at 11pm. So it might be worth asking your doctor about this mix? Pregablin supposed to be for legs but I use predominantly for sleep dosing up gradually for bed time. Ropinirole for legs during the evening and into the night (usually lasts till about 7am).
On a previous point I just noticed : yes for me pregabalin and ropinirole do sometimes trigger RLS but generally the Meds kick in after an hour and the annoyance stops. Different for everyone though which is what makes this so difficult to treat and control
Although a combination of meds is recommended for "refractory" RLS when single first line meds have failed, it's usual for the doses to be less than if taking each med alone.
So the combination dose of pregabalin would be less than the dose of pregabalin you would take on its own. The same for the ropinirole.
If I've correctly interpreted what you've written then it appears you are taking 3 X 1mg of ropinirole = 3mg. This is quite high for a dose of ropinirole on its own, the maximum being 4mg. At this level of dose, the risk of augmentation is quite high.
The dose of pregabalin you're taking is actually quite worrying.
Again, if I've correctly interpreted what you've written then it appears you are taking 3 X 300mg pregabvalin = 900mg.
This is a twice the maximum of 450mg i.e not just a high dose, a massive dose.
I think it irresponsible of any doctor to prescirbe or allow you to take such a dose.
It is of course your choice if you wish to do so, but I would never suggest to anyone else that they take such a excessivey high amount. Saying 300mg of pregabalin is "nothing" is grossly misleading and what you're suggesting is dangerous.
If 450mg pregabalin were not sufficient for somebody then I'd say the drug has failed.
I tend to concur with Madlegs, if your RLS has recently got worse then there may wll be some aggravating factor that has made it worse.
There's quite a few things that can make RLS worse Some of them are fairly obvious and others not so obvious.
The most obvious thing would be if you've recently started taking any new medication you've previously not taken.
It's a little ominous that you say you've "improved" your diet as diet can be a factor in RLS. Improving it in respect of one thing, e.g. losing weight, may mean making things worse for RLS.
What changes exactly, have you made to your diet?
Another factor is, I wonder if the pregabalin has ever worked for you. I note that 300mg is a relatively high dose. It's certainy not the dose you'd start on so I imagine it has been increased possibly several times. After augmenting on a dopamine agonists it can be found that pregabalin isn't effective. This may be becasue augmentation causes permanent damage.
Another possibility is that for some reason your iron levels have dropped. Iron deficiency can be a cause of RLS. However even in the absence of iron deficiency a ferritin level of less than 100 is associated with RLS. So this is worth having investigated.
The recommednation is that if your ferritin is less than 75, then you staret taking an oral iron supplement.
Although not as significant a factor but low vitamin B12/folate and low vitaminD can also be a factor in RLS.
I hope you are aware that 300mg pregabalin is quite a high dose. The official maximum dose is 450mg. Any amount above that is not at all advisable.
Note that when first line medications have failed (i.e. prmaipexoleand pregabalin) thenh this is known as "refractory" RLS and it is well acceptedinternationally that an opiod can be used.
I woudn't think of this as being a "stronger" med, it is simply different. Pregabalin is a controlled drug in some countires.
Your problem woulod be of course persuading a doctor to be willing to prescibe an opioid. You may be able to convince them if you can give them sufficient evidence.
Also note that the drug licensed for the treatment of refractory RLS is known as targinact which contains an opioid.
Guidance for the prescribing of this drug can be found in the British National Formulary, used by doctors in the UK. Of course, this may be different in Ireland.
I am so sorry to hear of your pain. I was in your shoes some 20+ years ago. My primary doc sent me to a neurologist who diagnosed my RLS. I was prescribed the usual RLS meds, which didn't help me. Months later, my doc finally put me on tramadol. It was amazing. One pill took all my pain away, and gave me restful sleep. An answer to my prayers. It kept me from losing my job, and allowed me to live a semi-normal life. Today I'm retired and am still taking tramadol. I am careful not to take too much, and am always trying to cut back my dosages, and it still works for me. I agree with the others that diet and exercise are important, but at some point the "pain" becomes overwhelming. I hope you can convince your doctor to prescribe an opioid. It is a tried and true pain reliever for centuries. God bless.
"Opioids" are a particular class of drug according to the way they work.
Other classes of drugs, e.g. dopamine agonists or NSAIDs work in different ways.
There is no class of drugs called "painkillers."
It just so happens that opioids can relieve pain. It also so happens that alpha 2 delta ligands can relieve pain.
The way opioids do it is act on opioid receptors and they raise dopamine levels.
However the ligands block glutamate and don't raise dopamine levels.
Because of this opioids can relieve some kinds of pain, but not others. They're quite poor for nerve pain. Ligands however are good for nerve pain.
Other differences, opioids used to be used for diarrhoea, but ligands would have no effect. Ligands can be used for epilepsy, but opipids would be useless.
And so on.
It just so happens that both can relieve RLS. However they do this different ways. It's not because they're painkillers.
To imply that "painkillers" can treat RLS because they relieve pain is misleading.
Not everyone with RLS has pain. Not all meds that relieve pain help with RLS.
Does it matter? Yes it does. There's at least two reasons.
One is that confusing the treatment of pain with the treatment of RLS can end up with people buying devices or treatments that relieve pain believing they will treat RLS. E.g. TENS and acupuncture, great for pain, useless for RLS.
The other. In the UK now the national guidelines state that opioids should NOT be used for chronic pain. Pain lasting over 3 months.
People who've never had an opioid for chronic pain before will be refused one. Those who already use one will be asked about stopping it.
Opioids are STILL recommended for RLS however.
What you write implies you're taking tramadol for pain. If so this is against guidelines. You make no mention of RLS.
For RLS tramadol on its own is not recommended for RLS, only as an adjunctive to other meds, e,g. DAs or ligands. Tramadol also has a risk pf augmentation.
For opioid monotherapy high potency opioids are recommended e.g. methadone, oxycodone or buprenorphine.
If you're happy that tramadol suits you for your chronic pain then no problem, but suggesting anybody uses it for RLS is misleading.
Hi!My RLS was horrible in the summer and I took all of my medicine, nothing help. Then I start-too take iron tablets, and after two weeks I dont have any Rls at all. Mybe it just for now and mybe it will come back. Sorry for may bad english , I am from Sweden.
Kerste, please continue doing exactly what you’re doing. It’s working, that’s all that counts. If you find the RLS creeping back then, and only then, would I try another form of iron called ferrous bisglycinate and I would think about taking it an hour before bed. This has worked for me for nearly 20 years, but for me it MUST be bisglycinate and it must be before bed, every night, not every other. Keep up the good work.
I agree with you LonePine and slightly disagree with some of what Elffindoe has written - over 7 years since I have had RLS I had two periods of few weeks when it was really bad - i..e getting no more than 1.5 or 2 hours of sleep at night and less than 5 in total -. On every occasion I was advised to take a high dose of iron i.e. 3 tablets of 67mg each = nearly 210mg in total (I got also tested with levels of ferritin below 20 as well as aneamia). Every time my symptoms went down dramatically within 2-3 weeks and whilst never completely gone, I just manage to get 6-7 hours sleep with some interruption but still 6-7hours in total.
Now I take the same dose of iron but I follow the advice by Elffindoe and others to take it only every other day and on an empty stomach in the evening with Vit C etc. It's just manageable without taking any medicines (never took any, especially after what I read from people on this forum who have much more experience of RLS and medications than I have). I used to spray magnesium but not anymore as my symptoms are also different now (more like burning feeling) and in the last two months I have started to also sometimes apply arnica oil or arnica gel and at times I can feel the relief instantly.
Well, check out my profile page. We need to get you feeling great and sleeping 8 hours EVERY night. The first step is the ferrous-bis and if that doesn't get you to full throttle we'll take it from there, ok.
By the way I get all my iron supplements without a doctor's prescription (although initially advised by a doctor and a neurologist to take them) at £3/pack of 84 tablets.
As others have said, please get your iron checked out. I have suffered with RLS for almost 30 years on & off with it getting really bad in the last 12 months or so, to the point it was happening every night without fail, starting early evening & had actually started in my arms as well. Was just about to start down the Ropinirole. Started on Ferrous Fumarate (for a totally unrelated issue) & it's helped immensely with the RLS. Chuffed to buckets but also extremely pi**ed off that something so simple seems to have sorted this for me. Picked up a lot of info from some members on here, including Elffindoe & have started looking into things myself . Some useful info on this thread healthunlocked.com/rlsuk/po...
Taking it twice a day now at the moment; one in the morning when I get up & one a couple of hours before I go to bed, with some vitamin c. If the GP takes me off the iron I'll buy some "Gentle Iron" & continue to take that.
No way Jose. Nice try though. It’s not better for people with nightly RLS to take iron every other day. We’re talking apples and oranges and I think you know that already so save that little speech of yours for Marlayna healthunlocked.com/rlsuk/po...
You don’t believe that iron can have an immediate effect and I think raising normal levels of ferritin ever higher is more or less an act of futility. Yet when you recommend that to members I don’t countermand you and tell them it won’t work. You consistently do that to me, however. Omg, even when it has clearly worked for them you try to talk them out of it and say it’s only placebo and they should stop doing what’s working for them and instead do it your way
As a matter of fact, I would say that given the opportunity, iron will provide immediate relief to close to 100% of drug-naive patients with RLS and no extreme inflammatory type disease, ie MS. 100% my friend, 100% 😁 I think there should be a banner at the top of this site stating so.
Wish I could say the same is true for people who are, or have been, on DAs. 25 to 50mg of nightly iron is like whistling in the wind for most of them. They may need 4x that amount to get relief for the night as I do and as Marlayna does and GillRLS and now Sher and Kerste and about a dozen others that have come and gone.
Tell GillRLS that it is all in her head and that of her daughter and that they must stop taking it every night and must instead take it every other night and that it will only begin to help after a minimum of 3 months. Give it up Elfin, iron works immediately. Just get over it. healthunlocked.com/rlsuk/po...healthunlocked.com/rlsuk/po...
Looking at the date of that post, it seems like the iron worked for you within a day or so and has continued to do so for 22 days except for a 30 minute blip one night?
Exactly! I started off on 3 a day (one in the morning, one in the afternoon & one in the evening) & it just seemed to take effect immediately. Not wanting to jinx things but that 30 minute blip has been the only one so far. It's worth a try, I was seriously at the end of my tether with it.
Of course not, I'm just talking about MY experience. I did mention in a previous post (I believe it was on my thread) that it very well may have just been coincidence but so far, it seems to be working for me.
I am afraid it has had that 'immediate' effect for me on two occasions when my RLS was really severe. Everytime the severity disappeared within 2-3 weeks. Since then I have dropped down the frequency of intake to every other day as I read about hepcidin etc. but I won't get the intake lower, I still take 2 or 3 tablets at a time. I can have decent night sleep most nights even with one or two interruptions.
I take pregabalin alongside codeine phosphate which brings me some relief have ok days and bad days at moment bad days where nothing seems to work as I said I take 2 PREGABALIN at 15,00hrs and 22,00hrs when I also take 2 codeine phosphate then its a waiting game as to when I fall asleep I never get more than 3 to 4 hours sleep a night so I know how hard it is to get up for work im a postman and leave home at 05,30hrs its a long night walking the floors waiting for time to get ready for work and thats the time when your body telling you it could sleep now !!try asking doctor for codeine phosphate but I think there reluctant to hand out opiates but worth a try
It is a highly bio-available form of iron that you can get on Amazon and the like. For some reason drug stores in the US only carry ferrous sulfate which I feel is a waste of time unless you’re under 18. One night when your usual regimen hasn’t worked try taking two on an empty stomach, preferably. If you’re not fast asleep in one hour then I suggest talking to your doctor about still taking the iron long term to get your stores up and see if you can get some improvement in your RLS that way.
Hi Nick have you had ferritin level test at all ? If not then i suggest you ask your doctor for one and ask what the number is most doctors will say normal for RLS it needs to be over 100 or higher. It’s best to get that test done firstbefore taking any iron supplements.
Iron tablets are not a sleep aid or sedative. Iron has no such effect. That is misinformation.
The most common sleeping aid used for RLS is a benzodiazepine, clonazepam. Your doctor may be reluctant to prescribe that long term however.
I note you take "2" pregabalin and "2" codeine. Since these tablets comes in different doses this is meaningless.
What is your actual dose of the two?
Note that pregabalin promotes sleep. The starting dose is 75mg, a typical dose is 150mg and the maximum is 450mg.
Codeine come in 30mg or 60mg tabs. It can disrupt sleep.
Depending on what doses you are taking then there's scope for INCREASING the pregabalin and DECREASING the codeine.
Iron can be used as a treatment for RLS SYMPTOMS. This is because people with RLS suffer from Brain Iron Deficiency.
It has been found that this can be corrected by raising the level of ferritin in the blood to at least 100.
First this requires blood tests for serum iron, transferrin saturation, ferritin and haemoglobin.
You need these tests to ensure it's safe for you to take iron.
If these are all normal you need to know the exact result for ferritin. This is a number.
If it's below 75 then taking ferrous bisglycinate can help.
NOTE when you take the drug, pregabalin 90% of it is absorbed into the blood within 2 hours. This finds its way into the brain quite quickly and takes effect almost immediately.
Iron is a mineral, not a drug. When you take it only as much as 2% may be absorbed. No matter how fast it is absorbed it will not make its way into the brain, it is first stored as ferritin. This may slowly raise ferritin levels, e.g. in about 3 months. This may then help increase brain iron levels and relieve RLS symptoms.
It will not help you sleep, that's nonsense.
Please see my reply to kerste on the best way to take iron.
There are behavioural remedies for insomnia which you could try. Look up "sleep hygiene".
Really interesting reply which I take on board thank you I think I need to explain a little about my meds PREGABALIN I take for RLS the codeine phosphate is for pain relief I have had 7 operation on shoulders and have arthritis in my back etc etc and the codeine seems to make me drowsy thats why I work it that these are the last I take a day ! At the moment I am going through a bad patch with RLS and sleep deprivation lucky to get 2 hrs a night but at best I only get maybe4hrs a night and waiting to see a doctor about increasing dosage of PREGABALIN or any other med the doctor might prescribe but through covid a face to face appointment is as rare as hens teeth I know I can talk on phone to doctors but think talking face to face they can see what RLS and lack of sleep does to people
Sorry you are having a rough time after those meds were helping you so much. Hope your doctor works something out for you if you are not sure on what he has prescribed then run it pass the members on here they will know.
I will for sure I've had excellent help from the members on this site and whenever I have to see doctor concerning RLS I always take my laptop/tablet with all the information from site to quote to doctor
Absolutely!!!! I must admit that I generally peek at someone’s history before I make recommendations. I hope you don’t mind but I saw that several years ago you were taking iron so I assumed you didn’t have one of those rare blood iron disorders. Please keep me posted. You are in my thoughts. I hate that the Beast has gotten the best of you.
Well a lot can happen in 9 years which I see from your post may have been when you took iron last so always worth checking your ferritin level first I guess. healthunlocked.com/rlsuk/po...
To which I'm forever grateful and still remember the shoulders you all offered for me to cry on in my darkest hours and in the middle of the night ( according which part of the world you are of course ) im in the UK, The help in received was unbelievable and feeling lower than a snakes belly and suffering from sleep deficiency was life saving I think we all understand what thoughts go through ones mind when you've had months of rolling around the floor and pacing the lounge with little or no sleep and having to do a fulls day work again good people thank you x
I understand that you may be taking the codeine for pain, but it should also help with your RLS symptoms. It can however disrupt sleep, as I said before.
I'm sorry to hear of your situation, it sounds dire and I have been there myself before.
I don't know if it helps but I recently needed an increase in my gabapentin, (for RLS). With my GP I phoned with the request and the medicines manager rang me back, the same day. He OK'd the increase and issued a prescription.
I gather that GP surgeries vary a lot though.
I'm sorry, I know nothing about your surgery or your arthritis. It might be worthwhile, when you can, reviewing your medication.
I don't think codeine a very good option for arthritis. A NSAID or steroid injections might be more appropriate.
I wonder if you've been offered physiotherapy or referred to a pain clinic.
You might also consider consulting an osteopath, especially one who uses acupuncture. This is for your pain/arthritis.
I apologise if you've already considered these, but I hope the suggestions give ideas.
The other thing I neglected to mention is if there are any factors aggravating your RLS.
This is usually some other medication such as an antidepressant or a sedating antihistamine.
tried or have had all of the above unfortunately its pain in so many words that I'm having to live with and manage and find codeine phosphate works to some extent I have to be aware of heavy meds because I start work at 6 being a postman and need to be alert if you get what I mean I'm well into double figures in cortisone injections from knees to shoulders they only masked the problem for a few ( I played football at a decent level in my younger days ) under physio at moment. A little confusing my health wouldn't you say ,
I'm really sorry to hear you're in this position. My initial response is always to try and suggest solutions.
Sometimes, unfortunately all the solutions I can think of aren't enough.
In which case I can only offer my sympathy. I do hope your situation improves with the pain.
I'm not sure how much your sleep is disturbed by pain and how much by RLS symptoms, but as regards the RLS symptoms it may help to increase the pregabalin.
If you read this link below you will see another option is to add in a small dose of a dopamine agonist and a benzodiazepine. Look under the heading "Refractory RLS".
You can also read the guidance on iron therapy in this link.
I think it is a real shame that iron therapy is actually the first thing to be tried for all RLS sufferers and yet doctors don't seem to be aware of this.
I always recommend it.
Also see what Goldy700 says about medical cannabis.
Nick, I am the woman who recommended iron to GillRLS many years ago now. healthunlocked.com/rlsuk/po... I also recommended it to you about 5 years ago, however, a member by the name of Nightdancer talked you out of it much the same as Elfin is doing now. If you like I will dredge up the dozen or so other people for whom this approach works. I did not make this up myself. I read about it 20 years ago on a site very similar to this one. The iron at night thing works very poorly, if at all, for people augmenting on the DAs, so I doubt that 5 years ago it would have been of much benefit to you. You are far enough past that point such that I am hoping it might work for you now.
I recommended the iron for his RLS which is what sounded to me was the reason for his pacing and inability to go to sleep. No where did I read about him suffering from insomnia as well.
I am so sorry for you . I tried Gabapentin with no success. A possibility for you is to try medical cannabis. It has been wonderful for me as it is almost non addictive and provides the most remarkable relief. The strongest relief comes from medically prescribed cannabis bud vaped. There are strains of the Indica variety that are specifically bred to help with sleep and relaxation. It almost instantly sends a calming effect through my entire body including my legs. If you have tried all the other medications and they haven't worked you might want to explore this option. I feel great the next day with a clear head and the only residual effect is a sense of calm.
Hi from Shropshire. I know where you are coming from. Tell you my experience of RLS. I found 300mg x 3 Gabapentin when it started coming on. This really did stop the RLS in its tracks. However, my memory was really affected. I now take Pramipexole. Seems to work.Try the 300mg x 3 of Gabapentin. If you find it is no good ask gp for Pramipexole.
Hope you get it sorted. I know its torture. But its not painful.
I’ve said the same on this site before siceage 10 it statarted it got so bad in my arms fingers so bad public travel was out the question lucky break , after botched surgery they started me on OxyContin then more botched ops left me in conic pain that all started 18 years ago now I’m still on OxyContin not sure if I’m taking for chronic pain or rs the thought of going back to rls The point is the morphine based does hold it back but the worst thing is do they appreciate the misery of rls in USA the suicide rate through the roof that’s got nothing to d o with the fact people live in so much pain there is no release People die of many things but the wish to stop this is not recognised sleep deprivation leads to misery it doesn’t just go away after awhile it destroys you and your partner just because it’s not heard or doesn’t mean it doesn’t exist I hear people on this site and I cry for them . Because no one hears them there’s more way to die than Covid ive prayed for you live to sto just how bad does it have to get not just for me but for the thousands out there and there families people don’t understand the misery attached given a few hours they wold be begging as we all do it’s not just a giggle as some people think thy have rel it’s destroying god bless all of you out there ish I could magic wand for you all the world has no idea of the suffering sorry to go on but today is a bad da bless you all
I have really bad pain in my legs when lying down at night and I use a tens machine,I also have fibromyalgia and have pain all over my body ,I use the tens and it really really helps but you MUST follow instructions and keep it on for hours, and then you will have relief from pain , be open minded and give it a go if you have pain, I would highly recommend it ,take care
Thank you everyone for all the replies and suggestions.I paid to see a consultant in March this year. This was the results of the tests he done,
"Dear Colm - your ferritin level was 442 which is slightly high so iron supplementation would not be a realistic option for you. Your B12/folate, Full Blood Picture and HBA1c were normal too."
So Iron is not a problem in my case.
I've augmented on Pramipexil after taking it for 20 years, I've tried Gabapentin and now Pregabalin. I can't see any other route for me other than opiates, or possibly medical cannibis might be worth a try.
Not to be a nervous Nellie here (which I essentially am), but that ferritin is way high…to my way of thinking. I would insist on a complete liver panel. A rare side effect of Pregabalin is liver injury - very rare - so please don’t let me make you neurotic the way I am. This might also explain the immediate RLS upon taking it. Your body does not like it. Please don’t stop it suddenly. Besides, if your liver was in severe freak-out mode there would likely be gallons of hepcidin circulating in your body and you would have severe, all day long RLS.
Hi, just an update on my situation. I consulted via telephone with my GP describing my plight in detail and asking what my next step should be. I was told that unfortunately they were unable to prescribe anything else but suggested I get my bloods checked again, which I have now done. Blood tests shows all as normal and my ferritin level at 485. I then contacted the consultant that I had seen at the start of the year and explained that the Gabapentin and then Pregabalin weren't working for me and asked him outright if he would consider prescribing an opioid as nothing else seemed to help. His reply was opioids are in the guidelines and can be very effective and he'd like to see me again before he would prescribe them. This sounds very encouraging. I have booked an appointment for 3 weeks time and will post how I get on at that.
I had a private consultation with my Neurologist tonight. After discussing how ineffective Gabapentin and Pregabalin were for my RLS diagnosing me as having refractory RLS, he prescribed me with 30mg Codeine a night. I have to update him on how it is working in 2 or 3 weeks.
Fourth night of taking 30mg of codeine and I'm still walking the floors at 3.30am. Should I not notice a quick reaction to the codeine or does it take time to build up in my system?
Most likely is ia not strong enough. Painkillers, and codeine is one of the weakest, usually work straight away. Have a look at the updated guidelines for average effective doses of all types of medicines for RLS: mayoclinicproceedings.org/a...
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I think 300mg of pregabalin is nothing, I would have thought it should be more? I have found a balance most nights now thank god!. Single meds did not work for me. But with very strict 8pm, 9pm, 10pm doses of 1mg ropinirole and 300mg pregabalin each of those times I find comfort most nights of I go at 11pm. So it might be worth asking your doctor about this mix? Pregablin supposed to be for legs but I use predominantly for sleep dosing up gradually for bed time. Ropinirole for legs during the evening and into the night (usually lasts till about 7am).
Contour Legacy Leg Pillows ended my RLS nightmare (really!)
Nightmare
Interested in opinions. RLS for me is a nightly nightmare. Been on Pregabalin up to 300mg. GP said I have depression...
Nightmare/hallucinations 
RLS Medication Recommendations
