I have quite bad RLS (every night) for the last 12 months - had it sporadically before for maybe 15 years. I am in the UK (England)
Been consuming all the info on this forum for the last 6 months.
The point of this post is to seek feedback on Prof Evangelou (Notts) who is mentioned on here as RLS aware and a good person to see.
A bit of background first, feel free to skip (to FEEDBACK section) if you just have opinions/feedback on Prof Evangelou
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My GP surgery is pretty useless. I’ve seen 5 GPS in the last year, 4 of them are no longer working there. The practice owner GP is known as a bit of a tyrant and from experience he is totally dismissing of RLS (doesn’t really know about it) suggested Magnesium Citrate. I know it helps some but not me. I’ve tried to educate myself (here) and had made my mind up to seek a consultation with an RLS aware Neurologist
I also currently have massive anxiety issues for a situation that I’ve been in for nearly 2 years. This has led to a number of SSRI ‘tests’ which have been terrifying (they all make you worse before better) I never got past the first week other than I I tried to stick with but side effects too nasty and never helped my underlying anxiety so weaned off over a few weeks
I have had iron panel tests, but lengthy to go into details but have been taking oral iron supplements for the last 4 weeks, currently 75g of Iron Bisglycinate and hour or so before bed, with VitC + apro-bio and on empty stomach, every other day (I have a question on that which I may post separately.)
My RLS & Anxiety are a source of major stress at home. I did make an appointment with Chris Murphy at Manchester but a) that’s a long way from me and b) I mentioned to her he’d likely recommend “Gabapentin’. My wife has heard very negative things about it ( no doubt on daytime TV) and with the distance and this, was very anti me going so had to cancel. My home life is far more important to me and after my horrors with SSRIs (I know not the same) she didn’t want me taking any more pills. I can’t say I’m overly keen BUT do need some relief.
I have started taking 2 x 8/50 cocodamol in the evening (last 3 weeks) can’t say any real difference but that’s only 16mg codeine so very low (I always used to take 2 x 500mg Paracetamol anyway for some time.
FEEDBACK
So Prof Evangelou. I’m sure I read a post that essentially said he was limited in what he does & recommends, I did search but of the (only) 2 posts that came back someone didn’t recommend him as ‘he doesn’t know much/anything about RLS’. I think he recommended a drug with name sounding ‘like’ Duroxitine’? Which they didn’t take
Sorry for the long ‘back story’ but PLEASE could anyone who was seen Prof Evangelou give me some feedback.
The other thing my wife is very worried about is if my legs are not RLS but the beginnings of MS or MND and wants me to ‘get tested’ for these.
Does anyone have any comments on RLS not being RLS but MND/MS/Parkinson’s
many thanks
SORRY for the clunky post, am typing in an old phone with very small screen (compared to many today)
I suppose what I’m looking for is someone who is very knowledgable and open to the various ways of tackling RLS - Iron, opiates, bupr, even if it has to be gaba
Also, to put my mind at rest, able to discount other conditions such as MS/MND & Parkinson’s
I do meet 100% the recognised criteria for RLS
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MaxxRLS
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I hope you're not still on quinine. That does NOT work for RLS and causes serious heart issues. If still on it, slowly reduce.
You are clearly extremely anxious and your GP surgery is not helping at all.They are supposed to follow NHS and NICE guidance! Despite many reports about magnesium, there are no studies that confirm it helps. All the anti depressants and nerve pain treatments you've been prescribed are KNOWN triggers for RLS. NICE guidance points this out and your GP should know this or at least read NICE guidance.
So, the first 2 steps in effective RLS treatment are
1. Take full iron panel blood tests and raise serum ferritin above 100ųg/L preferably 200ug. And raise serum iron above 60ug.
Pills can take months /years to work so an iron infusion may be an option. I'vejust seen that your % saturation is very high and you are awaiting a referral. How is that going?
2. Review and safely replace ALL trigger meds. The biggest culprits are anti depressants. If you are on SSRI/SNRI/tricyclical anti depressants you need a review and safe replacement. Amitriptyline is the worst for RLS. Trazodone and wellbutrin and Vortioxetine are safe options or diazepam.
I suspect your RLS has flared up in the last 2 years because of the anti depressants you have been taking. Switching to Trazodone, wellbutrin, Vortioxetine or diazepam may settle the RLS completely.
As for gabapentin and pregabalin, they aree now first line medications for RLS and like all meds they have side effects and lots of people abuse them. Pregabalin has a sedating effect and can actually help anxiety.
There are many people who do very well on them and side effects settle after a few weeks.
RLS-UK website sets out treatments and average doses and how to take meds.
Whoever you see in the UK will probably try to persuade you to take dopamine agonists ( Ropinirole, Pramipexole or Neupro). These drugs are no longer prescribed by experts because of the inevitable drug-induced worsening (augmentation) and high rates of Impulse Control Disorder. The American Academy of Sleep Medicine has recently issued guidance and DAs are 'NOT RECOMMENDED" & relegated to end of life scenarios.
So you need to stand your ground when you see a UK neurologist and make it clear you don't want dopamine agonists and want gabapentinoids or low dose opioids.
You may not need meds if you start a safe anti anxiety med and raise your serum ferritin.
There is only one doctor in the whole UK who is up to date on RLS. Dr Jose Thomas in Wales. All the others are STILL prescribing dopamine agonists.
As for MS , Parkinson's etc. I know it's easy to think you might have these, but it's unlikely. RLS is extremely common. It affects 7.5% of the population.
Thanks for your reply Joolsg, I probably shouldn't have included all the background stuff when I really just wanted feedback on Prof Evangelou as it may have come across that I was looking for more general advice. I've read every post and reply on here since Jan 2024 so am familiar with all the do's and don'ts, at least those mentioned since Jan 24.
I'll respond to each point. No, I am off quinine and have been for over 6months. This was prescribed by one of the 'here for a short time' GPs, in fairness to him he did listen and helped me a lot with my anxiety. If he had stayed around I'm sure he would have been open to reading more and trying to help more. I then saw the next 'here for a [very] short time GP (once, she only there for a few weeks) who did at least put me in for an Iron Panel test and did the referral to haematology. This has yet to happen but a few months later I quizzed another GP who looked on the system and found a response from Haematology that there was no signs of Hemochromatosis (excess Iron stored). I never progressed this but have since been taking iron supplements (as in my post). I actually did ask for another Iron Panel test but when I got it back it wasn't, no ferritin figures shown, no TSAT etc. I do plan to ask for another one shortly. I do feel that my Iron supplementation has made a small but significant difference .. and still early days I know.
Not in the post but in my profile (recently updated) it does say that I am currently on 40mg of Amitriptyline. I have been on 20mg for around 20 years following a 7 year battle with ME back in 2000-2007. This was a massive help to me as a major symptom was Neuropathic pain which effected my entire body (all my skin), arms/legs/trunk/face etc. Even at this low dose it reduced this significantly and I was able to function, start 'some' work and eventually 'come out' and recover from the condition. I was in my early 40s, had to be helped up steps (thankfully lived in a bungalow) and spent long periods bedbound, was very bad and likely coupled with severe depression. Other than a few very short relapses in the first couple of years I have been free of ME symptoms since. I have on occasion run out of Amitriptyline (when on holiday) and whether it's 'mental' of 'physical' I have felt signs of skin sensitivity/pain so I'm at great pains to come off fully. 20Mg is very low dose and my very occasional 'restless legs' over this period (maybe 1 day a months) never really prompted me to look into RLS further, so no knowledge of a link.
I'd never suffered from anxiety, knew people that did but thought it was just 'being very worried and probably a bit psychologically weak'. I was in for a huge shock when something happened to me that plunged me deep into anxiety and this situation is still ongoing. Am hoping that this may be resolved in some way in the coming months but don't know.
I've seen 2 clinical psychologists and an NHS counseller but tbh this made things even worse. I was given very short prescriptions (3 days) of Diazapam which is great, really helped but of course it is massively addictive and no GP would prescribe more. Then I was prescribed Citilapram, made me massively worse and ditched in 3 days. I was told that all SSRIs make you worse before you feel better and not all work for everyone so was then advised I could up my Amitriptyline, up to 60mg if i wanted but settled on upping from 20 to 40. This (as far as I recall) did not make my RLS worse. Still having issues 'another GP' prescribed Sertraline. Same things, 3-4 days later I came off as was unbearable. Over the period (of around 6 months) I was allowed a couple more 3 days of Diazapam. I found these settled my anxiety and I could be 'ok' for a few weeks so tried to manage this way rather than take any more SSRIs. Unfortunately in late Aug/Sep 2023 I contracted shingles, it was a very bad attack, worst my GP had seen (and likely bought on by stress/anxiety) it was extremely painful. It was suggested I up my Amitriptyline which I did to 60mg, along with Naproxen/Codeine over a few weeks it did subside and I reduced back to 40mg. I recall very little problem with RLS whilst I had shingles but certainly that was the start of the DAILY RLS. It is highly likely that increasing the Amitriptyline pushed me 'over the edge' but could also have been the aftermath of shingles, or the Lanzoprozal that I had to take daily for 2-3 weeks in order to tolerate the Naproxen (I know this is also an RLS trigger med).
This was late Sept 23, RLS wise things got really bad, would happen every night, sometimes, if I could fall asleep very quickly I might make it through the night but, being 68 and with an enlarged prostate I would be getting up 2-3 times a night, if I didn't get straight back to sleep the RLS would kick in.
Xmas/New year was horrendous and in Jan 2024 I joined this forum and started to learn about RLS. Around this time I also became aware that my RLS started in my feet with a burning/tickling type sensation, this increased in severity rapidly until it was a bigger issue than my RLS. At night (usual RLS time) my feet would get very hot, be BRIGHT RED and feel like they were burning and itching and sometimes as if worms were burrowing into them. My RLS would start very quickly afterwars. I saw my GP (a decent one in that he was not dismissive, but not knowledgable) it was he who suggested quinine. I took that for about 8 weeks, never felt any real benefit and since dropped.
All of this time I was still suffering quite severe anxiety, I would be fine for weeks but would then get an attack. I was able to get a few more 3 days 'hits' of Diazapam. This GP then suggested I should try Citalopram again and try and 'ride it out'. He did allow me a 5 day course of Diazapam to help with the 'worsening anxiety' in the first weeks of the SSRI. It was horrible for up to about 4 weeks, it then settled but I was no better than before and really did not want to be on an SSRI ( I did start on 10mg but then upped to 20mg). It was also indicated that a possible side-effect of them was like a itching situation in the extremities so I 'hoped' this was where my 'burning feet' came from and stopping then would stop that. Burning feet is a recognised condition (syndrome). I was also now aware of the possible relationship with SSRIs making RLS worse. I have been off SSRIs for 6 months now. I do still get anxiety 'attacks' and have been able to get a few more 'short hits' of Diazapam (actually now Lorazapam which is similar but more instant).
Currently, as mentioned, I am on an Iron supplementation routine. I was alternating days between doing the Iron 'properly' (no conflicting meds, empty stomach, all the great advice on here) and on the other days taking the Magnesium Citrate which has been mentioned on her by those taking it as helpful. As I said, I've not found that but you 'live in hope'
Max in addition I see you had some relief with diazepam as do I Professor Evangelou wrote to my GP explaining I needed 28 days of 5mg on repeat to use as and when
Hence my comment in my other thread about make a list of what you want him to do for you and write to your GP about
He will dictate the letter into his audio app on his laptop in front of you so you will know exactly what the letter to your GP is going to say he will also do you a private prescription to tied you over
CONTINUED (seems I reached max'd characters in previous reply.
I have for the past 3 days taken IRON every evening as again on here some have suggested it helps THAT NIGHT. I understand it is better for raising levels to take every other night so that eventually it reduces symptoms but thought I'd try it.
Too early to tell if it works yet but am interested in any comments on that approach?
Going back to Amitrytaline, after I had read on here it makes RLS work I did try and reduce (very slowly). I got down to 25mg and had a short spell of taking it in the morning rather than at night but a) my anxiety seemed to increase [may have just been external factors' and b) MORE IMPORTANTLY I struggled to drop off at night and woke very early and couldn't get back to sleep. Both things actually made my RLS worse as I know if I CAN get to sleep before it kicks in I stand a good chance of getting a decent nights sleep. Also, if I wake early and can't get back to sleep quickly then again the RLS kicks in and I've no chance of getting back to sleep.
Gabapentin, I'm not phased on going this route but my wife is so against it currently, even though she suffers badly from my RLS and I do have occasional PLMD (2-3 nights a week maybe). It may also be that it helps my anxiety and as it's also sedating may enable me to reduce my Amitriptyline, or maybe one day eliminate it completely.
I am very much aware that if I can reduce or stop my Amitriptyline that my RLS would lessen but at the moment, staving off anxiety is much more important.
So, I'd rather see if there is an alternative route and if IRON therapy would work. To do that I'd need to get a proper Iron Panel test, then see a Neurologist (very familiar with RLS and treatment options, inc Mayo) who would then sanction an iron infusion, then obviously find a place that offers this (I have seen options on here). Maybe me oral Iron regime will work.
Which sort of goes back to my original query as to opinions of Prof Evangelou.
As mentioned my wife is very stressed and concerned that it is not RLS and could be something else. I should say she is registered blind (has some but very limited vision) so cannot read anything re: RLS etc. She really does only get her info from TV. I do try and explain what I have learnt but she is very single-minded and thinks I am too obsessed with it. She has NO idea how bad it is for me as I really do try and shield her to a degress as she, like me, is suffering the stresses of our current predicament.
I am personally 100% certain it's RLS and do not think it could be MS/MND, it is more peace of mind I'd like to get something official for me wifes peace of mind.
As I said, I've read everything posted on this forum since Jan 2024 so fully aware not to touch DAs (and very grateful for all the info here). I've read everything about peoples experiences, triggers, possible helpful 'things' vitamins, machines (I have a therapulse but sadly never did anything for me).
I think if IRON therapy is not going to work then i'd like to opt for the 'bupr' route as there are some success stories on here. As mentioned I am on a very small dose opiate in 2 x 8/500 cocodamols at night. Certainly nothing miraculous (not expecting it) but may help in some small way.
I will also look more into alternatives to Ami, seems that any alternatives have a period of 'worse before you get better' (Ami does) so in my current situation this is perhaps a no-no.
It does seem that you need to stay on something for your anxiety and if Amitriptyline controls it then it is a possibility.You say early on in your post that you ger RLS once a month. Is this still the case??
If so, staying on Amitriptyline to control anxiety would seem sensible.
Many people control RLS with clonazepam, a longer acting version of diazepam. That may be an alternative.
By the way, I also have MS ( had it for over 31 years & lots of permanent damage) but I can honestly say it's a minor inconvenience compared to RLS AND if you are newly diagnosed, there are excellent drugs to stop permanent damage now and it's taken seriously by doctors, unlike RLS.
Joolsg, thanks, thought I’d do a quick reply on my phone. Sorry if it was confusing but Noooo, RLS is EVERY night, even before bed (going back years was around once a month). I’ve been trying to monitor it, inc all foods and meds and for a while it was like clockwork between 21:40 and 22:20 (before bed) I would have to walk around for a few minutes to take the edge off. There would be very few days without some mild RLS before bed BUT I almost welcome it as the best nights I’ve had are when I’ve had it, walked it off and managed to drop off quickly before it came back. Even some of those I haven’t dropped off and have to walk, again not dropping off relatively soon and it’s back. My average night currently is 75% I will feel some RLS before bed, I always ensure it’s ‘gone’ before I lay down but often (40-50%) it will come back within minutes. The VERY WORST CASE is if I fall asleep but wake a few minutes (2-30) later and it’s really bad. We had the phone ring (wife’s phone, mines off, hers normally but a friend had some issues so took to bed) and it woke me, took 3 lots of walking (10m) to finally get off. With awake time between got around 4hrs sleep. I know that’s ‘not bad’ for some sufferers but wipes me out the next day and vastly increases my anxiety.
It’s only been 3 days that I’ve taken iron every night so too early to tell. I did have to have 2 x 0.5 mg Lorazapam yesterday as I had to deal with some issues relating to the reason I’ve developed the anxiety and it was the best night for ages some RLS before bed but got off straight away and slept for 8hrs
I know that Diazapam / Lorazapam help with RLS but just cannot be taken with any sort of regularity owing to addiction/dependency but no chance of that as just cannot get it prescribed in most instances.
The amitryptiline was never prescribed for anxiety and until Jan 2023 I’d never had anxiety. It was prescribed for nerve pain but also had a sedating effect and after 20 years it seems I’m reliant on it to get off to sleep and stay asleep longer. It is prescribed for peripheral neuropathy and some I’ve read are prescribed it for RLS (as is ‘seen’ as a ‘type of’ Neuropathy) by most GPS.
Ultimately I’d like to reduce/get off it but as it is likely helping with my anxiety AND more importantly helping me sleep I don’t feel I can yet.
I agree with Joolsg. Stay on the Amitriptyline. From your description it does not make your RLS worse, and although in general it may make RLS worse it doesn't do that for everyone.
The iron at night as suggested by DesertOasis should work immediately that night to stop your RLS, so in your case it doesn't seem to do that so go back to every other night.
Your probably already aware that PLMD is treated the same way as RLS.
I don't know why your doctors are so against diazepam since it works for you. It's not addictive per se but of course you can become dependent on it just like an opioid or any other medicine. It can be hard to come off it but can be done successfully if done slowly. I took it for many years. And it is very effective for anxiety which is what I took it for.
Clonazepam might work but it is mainly for sleeping. It also has a long half life of 40 hours so can make you tired the next day.
I would ask for the buspar and do see Prof Evangelou.
Sue, many thanks for again a very full reply. It’s hard to know if Ami is making my RLS worse. The only ‘link’ was that it became an every night thing (from odd day a month) following my very severe case of shingles where I upped it to 3 x as much as I was taking (before anxiety issue 8 months previous).
Up until Jan this year (found this forum) I didn’t know of a link between ami & rls. Reading up on Gabapentin I note one if its main uses it to treat ‘post shingles nerve pain’. Very tenuous link but could my worsened RLS be anything to do with my shingles? Never heard of any link. It was on one side of my trunk and I can’t say I have any residual nerve pain after it.
My GP surgery consists of the owner, who I’ve described as a dinosaur and his ‘mate’ (S assuming as he’s been there a couple of years now). Both have flatly refused to prescribe any sort of Benzodiazam. The ‘temp’ GPs (none lasting more than a few months!) have all been open to these v short (3-day v low dose) courses of Diazapam and seem interested to ‘listen’ and realise they may not ‘know everything’
There is another new one started now so may try and get to see him but frustrating to go through a few appts, get enough ‘info’ across and some rapport and they are then gone.
It looks like from Zenawarrior73's reply you will be able to get diazepam recommended to your GP from Professor Evangelou but if not the buspar should work.
also, whilst talking about my GP, the worst thing I could do is take any info I’d found on the internet or tell him anything I’d read, he is EXTREMELY anti. I had this many years ago with another little recognised condition. I know there is TONS of garbage out there but everything I read is from recognised knowledgeable places and would likely only be open to accepting it if in multiple such sources.
For your wife go to the Mayo Clinic article and the section where it lists the common symptoms of MS and read them off to her so she will understand that you don't have any of the symptoms. mayoclinic.org/diseases-con...
And for Parkinson's parkinsons.org.uk/informati... emphasizing the first 3 as the others could apply to many diseases or problems where as the motor symptoms are more specific to Parkinsons.
I’ve just read them myself, thanks for the links. I’ve never thought I had the early stages of these and it’s clear I don’t.
I don’t think my wife seriously thinks so either but she can’t understand RLS, how come it’s worse now than a year ago. What causes it? She doesn’t understand (like 99.999%) of people the ‘relative’ pain of it and that you HAVE to move/walk. Then it comes back. The usual quite ‘understandable’ misunderstanding.
We both saw the Ch5 doc on it years ago but probably both thought it was a bit ‘sensationalist for TV’ and only effecting a few dozen people.
We both saw a program recently (the last year) which discussed ‘the most dangerous drugs in the UK’ and pregablin came top, no 1 most dangerous, so that’s stayed with her. I’m pretty sure that was more ‘the most harmful if abused’ but it didn’t really say that. She also picked up on ‘fits’ and when we first discussed it as an option she said ‘no way, not having you having guts’. I’ve tried to explain but it is difficult for her, especially with my other issues and thinking back to my 7 years of no work, not a lot else because of ME/CFS 2000-2007 (think my profile mentions this)
RLS if not treated tends to get worse with time. That happened to me. Look at the NICE Guidelines for RLS that recommends pregabalin or gabapentin and tell your wife about that or the Mayo Algorithm. Ask her if they would recommend them if they were so bad.
Prof Evangelou does not know much about RLS but Zenawarrior73 said "I showed Sue's advice and his words were that's very solid advice." and he then followed them. So he is open to learn unlike most doctors. So I will make a separate reply of my usual advice so if you want you can copy it and show to him. For opioids print out the section on opioids on the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... You should also read the whole thing as it is the bible on treating RLS.
I don't know what your wife has heard about gabapentin but for many people, me included, it completely controls their RLS. Pregabalin is similar. They can have side effects that some people can't live with but it is easy to come off it if one does so slowly without withdrawal effects.
I already recommended buspar (Buspirone) to you for anxiety. Did you try it?
Sue, many thanks for your reply, just did a huge on to Joolsg, just to reply to you specifically. As mentioned in that reply, I'm not totally averse to the Gabapentin route but I've never been able (yet) to go the PROPER Iron route (raising to 200-300) and also perhaps try the 'bupr' option but to do any of that I'd need to see an RLS aware Neurologist. My GP is not only NOT RLS aware but completely dismissive of it, when he said he thought (from a 3min session, just asking a few questions, no examination, nor knowledge of my interaction with his (he owns the practice) that I had 'peripheral neuropathy'. He did refer me to Neurology saying 'they will only put you on Gabapentin and you'll be like a zombie' - as mentioned I think, he got a letter back saying they couldn't offer an appt as he'd not given them enough info and done relevant tests. This was July 11th, I chased this and eventually he sent me for a blood test to check for B12 and folates. (this was 2 weeks ago). I have been taking B12 for some time based on my own research so B12 actually higher than 'normal'. My burning feet are less severe though so may be helping.
I have also read the Mayo stuff, a while ago now but quite familiar with that philosophy. I don't stand a chance in hell of my GP taking notice. In fairness he's late 60s at least and a bit of a dinosaur. I'm sure he is very good at 90% of things that come through the door but just not open to anything else IMO.
"I already recommended buspar (Buspirone) to you for anxiety. Did you try it?"
I'm sorry that didn't ring a bell, I may have missed it or got sidetracked and not remembered. I generally have to read this forum on a phone (and old, small one at that) and find it difficult to track replies, not just me own posts. I will search for it and look into it. If it's prescription only I will no doubt struggle with my current GP. He does have 'another new one' but how long they will last is hard to say, none have lasted more than a few months.
Thank you again for your reply and all your other posts helping everyone on her who suffer from this horrendous condition.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. 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 to 2 hours before bedtime as the peak plasma level is 2 hours. 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 will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin).
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 up-to-date on it at Https://mayoclinicproceedings.org/a...
Sue, sorry to throw even more questions at you but as I recall you posted the ‘de facto’ guidelines in taking oral IRON to raise Iron/Ferritin levels. I understood fully what you recommended about alternating days and have read up elsewhere why this would result in more iron actually getting into your ‘daily levels’ system and raising levels to 200-300. I did mention mine was (just) over 100 but TSAT was 53% so too high and was warned off supplementation (by GP)
I’ve since been told my TSAT level is ‘not a problem’ (nothing else, no explanation and no appt from the referral I had months before. So have embarked on an iron supplementation routine. I have Iron Bys (sorry hard to look up full spelling when working on a phone) 28mg pills. I’ve been taking them (x2 so 56mg) as described by yourself and others, vit C empty stomach, about an hour before bed, every other day, last few days + a pro-bio that was recommended. I upped this to iron 3 pills (84mg) after a week or so (I think the rec was 75mg)
I’d read great feedback from someone ‘Desert?’ who found that daily iron intake stopped RLS for that night. Anecdotally I’ve had slightly better nightS on my IRON NIGHTS so a few days ago (last 5 evenings) I’ve taken the IRON REGIME every night. Too early to give any indicative feedback.
So, to my question, what is your view on this?
I understand it might take ‘longer’ to raise my base levels? But any other downsides IYO?
I do intend to try and get a PROPER Iron Panel test from my (new) GP but this will be a few weeks away as away from home until mid-Oct. Will be interesting to see my IRON LEVELS and TSAT.
Also, whilst thinking, was Turmeric noted as a negative in relation to Iron Supplentation?
With at TSAT of 53% you do NOT WANT TO TAKE IRON. sciencedirect.com/science/a... Iron can build up in your organs and injure them over time. Look up Hemochromatosis. You may want to check with a hematologist. UNLESS you didn't fast before taking your test or you didn't stop taking iron even in a multivitamin 48 hours before the test or you ate a heavy meat meal the night before.
Turmeric can interfere with iron absorption even if taken in the morning.
Thanks again Sue, I did fast and didn’t take any iron / multivitamin 2 days before the test. The iron I did take was just a small amount in a multi vitamin and minerals.
As I mentioned, I was referred to haematology but heard nothing. At a (much) later date I asked about this (to my dinosaur gp) who said he heard from the haematologist there was no evidence of hemochromatosis. So no reason to not take iron (this was ‘in general’ and not any specific level. I didn’t get ANY figures or copy letter. This was a while ago (May/June) and did not take any additional iron, it’s only that with my RLS getting worse and causing more stress & anxiety I started it at the beginning of Sept. I did ask for a full iron panel around the same time (a few weeks earlier) but what I got back only mentioned IRON, no mention of ferritin or TSAT % so no real use. As I say I just went ahead anyway.
Clearly I need to get something done, hence my original question.
Thanks Zenawarrior73, I am going to reply to everyone later this morning when I can get on my laptop (struggle in this phone) but great to hear from someone who has seen the professor.
hi Max I arrived at my appt earlier so can continue my post
If you search all my previous posts you will see my history
I basically have restless legs syndrome in my legs arms and abdomen and I have benign fasiculations widespread throughout my whole body.
I saw prof Evangelou in March this year for the first time and due to the muscle twitching and right arm weakness he immediately referred me for nerve conduction and EMG which were thankfully negative. So I’ve been down the MND rabbit hole and it’s a dark place. I stayed in this hole for a further 4 months!!
Fast forward to the next 2 appts with prof evangelou
Appt number 2 he tried to prescribe me Duloxetine which for the muscle twitching would have been great but would have caused my restless legs to get worse
So back I went for appt 3 where we actually discussed my restless legs
Partly my fault I think I was so fixated on the twitching and MND MS Parkinson’s I lost sight in my first appointment because I was an utter mess.
Sue, Jools, Amrob, Desert and a few others armed me with advice which I took and showed him
He listened and I mean truly listened I showed him Sue’s stuff and he says that’s solid advice.
He prescribed me Pregabalin I’m on a v v low dose as I also take Topamax for the muscle twitching
I take codeine for my hip which also helps with the RLS
He also prescribed diazepam 5mg as and when needed but told my GP I should be allowed it on repeat 28 tablets at a time
I also take iron bisglycinate EVERY night with vitamin C one hour b4 bed.
In a morning I take 800mg of magnesium malate and vitamin E vitamin D calcium fish oil a good probiotic a b complex turmeric and a methylb12 and a co Q 10
In the afternoon around 2pm I take a magnesium threonate or citrate in a smaller dose I think it’s 375mg
I’ve cut out most sugar from my diet
I’ve reduced my walking and have started a strength training routine as all this started after double hip surgery and my walking was exacerbating it.
The last 2 weeks I’m finally turning a corner after 8 months of hell
Prof Evangelou will listen and is a decent consultant with a friendly manner but go armed and get him to write to your gp demanding all the blood tests that Sue and Jools recommend my iron was 27 and had dropped from 54!! He’s also lead consultant at notts hospital or was at some point I believe but his speciality is MS.
Decide what route you want to take however before you go and if you do mention buprenoephine and have any luck with that with him you please let me know as I’d be interested.
I also understand your partners concerns my other half has been to hell and back with me!!
Thanks Zena, really appreciate you taking the time to write that. Am very interested that you take IRON every night. As you know the advice to raise levels is to alternate each night which I have been, the last 3 days I've taken it every night, in accordance with advice here in that, empty stomach, with VitC and I also just started taking a pro-biotic which was also mentioned on here to aid absorbtion.
I'll look into your Magnesium routine also, I did used to take it every night but have been alternating at night with Iron, I'm sure I read on here advise to take it 1hr before bed. I've never really felt Mag worked for me but will look into poss taking in the day.
I have to go out now but may reply more later. I have done a MASSIVE reply to Joolsg who, along with Sue has been a massive help so far.
Oh, and yes, as you mention, this is also a HUGE issue for the partner, and for me the effect on my partner with disturbed sleep is the main motivator to get something in place to reduce this condition. Total relief is just unimaginable but enthused that some appear to have this.
Hope your last 2 weeks continue and you get rid of this awful condition,
Also meant to add I’ve been soaking cotton wool pads in castor oil and putting on my feet (have to wear 2 pairs of socks ) in bed and that’s helped too
You may be interested to investigate training the neural circuit training which can alleviate symptoms. I’ve had rls for 20plus years and was on 600 mg Gabapentin. A year ago I used the techniques for the debilitating long covid I’d had for 18 months, with great success- about half my many symptoms disappeared very quickly, and most of the rest within weeks of starting the work.
The understanding and techniques enabled me to reduce Gabapentin, and I’ve been off meds completely for about 6 months now. The rls didn’t improve, but didn’t get any worse, and was (just about) bearable. I’m now working on the techniques to see if I can get rid of the rls completely, and I think the training is having an effect. I use the ‘Curable’ app, which is very good.
Yes I started to reduce it gradually and my rls didn't worsen, and so I stopped it and it hasn’t worsened. So I’m now trying the neural circuit reprogramming which worked for my long covid symptoms.
just a quick post to thank all that have responded and apologise for not responding.
Reason is, on Friday I had a familiar itching, burning, prickly heat type sensation under my arm, didn’t think anything of it at first but took a look and 3 long red blotches were there. Fearing it was a return of shingles I managed to get an evening appt at an emergency treatment centre and yep, seems to be shingles. Everything else gets put aside now but I’ll be back at some stage.
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Iron in the Brain not in the Blood
RLS specialist UK
Neurologist in South of England
Iron infusions
