Just thought I'd write to give you the latest on my treatment just in case it would help anyone else..
I have had yet another blood test and been told everything is "normal".. which is good... although I've not seen the results for myself so don't know what the actual ferritin level is....in march it was round about 50..
Doctors have suggested I cut out all caffeine... including the 2 morning cups of coffee...
I've been told a codein tablet 15 mg each night before bed should help...(or if needs be take 2)
Doctor also suggest drinking a glass of tonic water before bed..as the quinine might help...so Feverfew brand and small glass .
My daughter whom I've recently met after several months let me try some of her CBD oil...1000 mg strength..pure.
So I've done that for last week too..
2 drops under tongue before bed .
I must say....all these things have helped...
the restless legs is no where near severe..
I still also take a 200 mg ferrous sulphate (iron) tablet each day...but have stopped most other vitamin tablets such as magnesium and electrolytes and B complex..
I'm not sure if I should continue with Vit D as its such a good supplement..
Could anyone tell me if they have had relief after using CBD oil..?
Any other comments too would be appreciated..
Thank you
Jan
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janland
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If your doctor tells you that your ferritin is "normal" this is useless information. If you're going to benefit at all from raising your ferritin it needs to be at least 100ug/L. Even at that level only 50% of RLS sufferers will benefit. "Normal" is anything above 15ug/L.
Ferrous sulphate, especially a prescribed strength may not actually help! All it may do is cause intestinal.problems. Although this doesn't sound logical, an over the counter "gentle" iron would be better on your intestines. In addition if you only take it once every 2 days NOT daily, then you will absorb more of it.
Taking frequent high doses of iron is appropriate for iron deficiency anaemia but not for RLS, especially if you're not anaemic. It won't be absorbed.
Drinking a glass of orange or taking vit C at the same time also helps iron absorption.
I could suggest dietary iron, but being a long standing vegetarian, I don't want to be reminded of times when it was assumed vegetetarians were weak, anaemic and had long ears.
I'd suggest you carry on with iron, but gently!
Quinine used to be tried for RLS. It didn't really work. This was in the days when RLS was thought to be associated with night cramps and hence if it worked for cramps, it should work for RLS. It's now known that the two aren't associated.
It's now largely not used because of the damage it can cause
In addition to get a sufficient amount of quinine to have any effect at all, you'd have to drink about 20 liters! I'd say one glass of gin and tonic at night might be enjoyable, but the gin might trigger your RLS.
So sorry, on a doctor's scale of RLS knowledge from 1 to 10, your doctors not doing so well.
If she/he ever mentions soap, take off another 3 points.
The thing about magnesium and vitamins B12 and D is that you're not going to benefit unless you're deficient in these. Vit D deficiency is actually quite common so a daily dose may at least maintain a level. I've read this is because we wear clothes!
There's no harm with the others.
Personally, I don't rate CBD oil. There's no real evidence that it works for RLS at all. No scientific evidence and very little anecdotal evidence. In addition there are so many different products with so many different contents, ratios and qualities etc, that there's really no such thing as CBD oil, only CBD oilS. If you manage to find one that's effective it may need a lot of trial and error and a lot of money.
The oils that are more likeky to help, it seens are more likely to be ilkegal. However, please don't let me put you off trying if you wish.
Yes... well actually,I do think you are quite right.
I have no faith in any of doctors in my local practice..but at least this particular one is sympathetic.
I have been seeing the doctor for rls for about 2 years now..but so far no progress at all.
She told me to stop my 2 cups of morning coffee as well and to drink decaffeinated...but I've since read that caffeine can help raise dopamine... and that's what we are short of isn't it?
How can I argue with her that my ferritin at around 50 is normal..
When I request a print out of results its as if I'm asking for a Carribbean cruise...!!
I asked several times and was emailed something fuzzy and unreadable..blurred..
I used to be able to get a proper print out on paper over the counter..
It's all so frustrating..as I'm getting nowhere.
Ferrous sulphate does upset my stomach..
I used to buy gentle iron from online but of course all extra money.
I have read and researched more about rls than the doctor I think...
The CBD oil has lots of followers...but its early days for that.. and very expensive 1000 mg....!!
I have cut the supplements down somewhat.
I did read co enzyme Q10 might help...so bought some of those and cod liver oil and folic acid and rose hip..(for joints)..
but all very expensive...
I'm also of the opinion that a healthy gut makes for a healthy body so make sure I have enough kefir and bio cultures .
The only real thing that could be a trump card....is that spikey bed mattress thing..
As you say some people find caffeine helps. It is listed as a trigger in some sources. It doesn't raise dopamine. it blocks the action of another neurotransmitter, adenosine. Adenosine has recently been found to be a more fundamental factor in RLS than dopamine, glutamate and brain iron deficiency, therefore caffeine should make RLS worse.
Dipyridamole, which in has the opposite effect to caffeine is being investigated as a treatment for RLS.
There's no explanation then why some people find caffeine helps, it shouldn't.
However, personally I don't have a problem with it. I try to limit to 2 cups of coffee in the morning. If I do have too much, I get jittery and can't sleep, but otherwise I'm OK.
Your doctor is quite right that a ferritin of 50 is normal. The point is however that it's OK being normal for someone who doesn't have RLS. Braun iron deficiency (BID) is associated with RLS, I believe because of a problem transporting it across the blood brain barrier (BBB). Gerritin is a factor in this as the higher the ferritin level the better iron will be transported across the BBB, from the blood into the brain.
GPs just don't know that sort of thing. As I wrote, carry on with the iron.
The iron I use, I just get from the supermarket, it's quite inexpensive and it's not a high dose so it might not be the best, but it's OK.
With my GP surgery I am registered for online access to my medical record. When I have any blood tests, I can login and read all the results. I can read all my record of consultations, letters from the hospital etc. It goes back as far as when I moved here in 2005.
I also order repeat prescriptions and make appointments online.
I used to be ignorant about ferritin and never even knew it had been tested, I was never been told, never mind it being normal or not. However recently, by looking at my record I discovered that it has been tested on several occasions. It has always been "normal" i.e. above 15, but once it was 26 and at its highest 60. Not good enough for someone with RLS.
I even discovered several other things which I never knew!
GPs in the UK now are supposed to give you online access. I suggest you investigate that.
I get magnesium, vit B12 and D online, quite cheap. I:ve seen the price of CBD oil, I've never bought any. The stuff you can legally buy in the UK is highly unlikely to be of any use for RLS.
Some of these "naturak" remedies can be expensive and there's often claims about them that's not supported by any evidence so I'm very sceptical.
From what I've been reading recently, I'd say you are right about the gut, probiotics and kefir sounds good.
As regards doctors, I think there's a lot of misconceptions about them. There's an expectation that they know everything, but they can't possibly. There's even the perception that they have sone kind of moral authority. Certainly the worst doctors believe that themselves. Really the only authority they have is their medical knowledge which is obviously better than a lay person, but even that's not always legupitimate when they're ignorant about something.
Even under the law you don't have to do anything they advise you to do if you don't want to. (Law of informed consent). Neither do you have to stop doing anything they advise you not to do. However, what you do or don't do is your own responsibility. A doctor is responsible TO you not FOR you.
Under the latest NHS 10 year plan you are supposef to be given "personalised" care. This means that the doctor-patient relationship should be seen as a partnership where the doctor assists the patient in making health decisions taking inot account the patients holistic needs
If you find your doctor is sympathetic, that's a good start. If she's also receptive to any valid information you give her and you jointly evaluate it, that's even better.
There are still doctors around, I believe, who won't admit to not knowing, cover up their mistakes and dictate to you what to do or don't do. This is no longer acceptable.
I have to apologise, I can't recall if you've ever mentioned taking any medication for your RLS. Codeine isn't recommended.
I also don't recall if I've ever made you aware of the UK national guidelines for the management of RLS.
If I haven't I'm doing it now.
These are published by the National Institute for Health and Care Excellence. (NICE). NICE issues guidelines for doctors on how to treat various health issues, e.g. RLS. The guidelines are based on evidence and are supposed therefore to be the best thing to do. (Although they may be a little out of date).
It seems to me that if any doctor fails to follow these guidelines by either NOT doing something that the guidlines advise or doing something that they advise against and harm is caused to you, then that doctor is at risk of being charged with negligence.
It's probably not feasible for doctors to be familliar with ALL the NICE guidelines and it sounds as if, like many yours isn't. However, once they have been made aware, they can't really have an excuse for ignoring them.
It also sounds as if your doctor is being dismissive of your symptoms. Not everybody experiences them to the same degree. So in addition to to the NICE guidelines it might be useful for you to complete the IRLSS severity scale.
Sorry again, I don't recall if you've indicated that you do NOT wish to take any RLS medication. It doesn't seem as if your doctor has prescribed any included in the NICE guidelines.
If you do wish to be referred to a neurologist, you will find, that being allopathic medical practitioners (NOT holistic) they will only prescribe RLS medicines.
However, you do not fit the criteria for being referred to a neurologist, as also stated in the NICE guidelines which are these -
1 An insufficient initial response despite an adequate dose and duration of treatment.
2 The response to treatment becomes insufficient after a time despite an increased dose.
3 There are intolerable adverse effects.
4 The person reaches the maximum recommended dosage and treatment ceases to be effective.
5 Augmentation develops.
You can see that you don't meet these criteria if you've never been prescribed an RLS medication, because they are all about medication failure and it you've never had any, then they can't be said thet have failed.
Your doctor can prescribe a RLS medication if you wish. This may help at least in the short term, until you can get more succcess with supplements and diet.
If they haven't prescribed a RLS medication because they don't know what to prescribe then the NICE guidelines also tell them that too.
The guidelines state -
First-line recommended drug options for people with frequent or daily symptoms are either:
A non-ergot dopamine agonist (pramipexole, ropinirole, or rotigotine), or
An alpha-2-delta ligand (pregabalin or gabapentin — both off-label indications).
However, you have probabaly already read many posts demonstratinmg that it is inadvisable to take a dopamine agonist because of the risk of augmentation.
The NICE guidelines recognise this. They state -
Before commencing drug treatment, ensure the person is aware:
Of possible treatment complications. In particular, augmentation, loss of efficacy, and the risk of impulse control disorders (ICDs).
I would suggest then, if you have already taken RLS medications and they have failed then you meet the criteria for referral to a neurologist, who may possibly prescribe an opiate, otherwise there is no great advantage to seeing a neurolgist.
OR, if you've not taken a RLS medication before and wish to try one then you request that your doctor prescribe you either gabapentin or pregabalin. They have no excuse for not doing this, it's clearly recommended if RLS is severe.
As evidence of the severity of your RLS, you can complete the scale and tell the doctor your score.
You can either print out and send a copy of the NICE guidelines to your doctor, OR read out excerpts from it as relevant or just request that they view the guidelines online
If you do ask and the doctor does prescribe gabapentin or pregabalin then they probably won't know the correct dose or schedule either. Ask that they look these up in the British National Formulary. Note : they aren't licensed for RLS
The dose of these for RLS is ONCE a day up to NOT 2 X or 3 X a day
I would be tempted to politely but assertively say to your doctor that you feel they are being dismissive of your suffering and you find this acceptable. You would like it to be taken more seriously.
The gabapentinoids, gabapentin or pregabalin do NOT cause augmentation. Consequently, although it's not widely known as yet, they are recommended as the FIRST treatment to be tried.
the NICE guidelines are a bit ambiguous about that. The loss of efficacy, augmentation and Impulse Control Disorder they refer to only apply to dopamine agonists.
Since government advice now states that people should get enough sleep because of the health consequences and their recognition of the scale of the problem, it would now be irresponsible of any doctor to dismiss insomnia as trivial.
Sleep deprivation can lead to physical health issues, not just mental health issues.
The "new" treatment I may have recently mentioned is not yet tested or licensed for RLS.. Dipyridamole is being suggested as a treatment. I know some members have tried it, but haven't heard anything more from them recently.
It is licensed as an anticoagulant.
If you're still with the same doctor who's been letting you down, I suggest you change doctors unless they change their ways. Unfortunately there is a well established culture for that sort of behaviour and its no longer acceptable.
I have had wonderful results with CBD oil - but it must be full spectrum so a small amount of THC seems to be good. I find the oil really helps me to sleep and relaxes my legs. I find it the best medicine but unfortunately quality and strength vary so much, it is a matter of trying various brands to see what works for you.
That's great. It does appear to help some people. However what you're suggesting is illegal here and because of the expense and uncertainty of the outcome, then I'm not going to try it.
I wouldn't want to deter anybody whos willing to give it a go. It's just that I think people shouldn't expect too much.
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