I am new to RLS and came onto this website for some support. Does anyone have anything positive to offer as reading the posts has sent me into a spiral of panic and overwhelmed by all the negativity.
Positive support only: I am new to RLS... - Restless Legs Syn...
Positive support only
Written by
Courtney-smythe1963
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68 Replies
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Hi Courtney and welcome!
I always try to be positive but you have to realise that many people who post on here are at the end of their tether. Maybe they have been wrongly prescribed drugs or the drugs may no longer be working, or they haven’t slept for days etc. Many doctors are ignorant of RLS so people turn to this forum for help. Unfortunately people don’t tend to post their success stories but just things that are going wrong for them.
I’m a success story at the moment with Pregabalin and have been doing regular updates so it’s not all doom and gloom 😅.
Tell us a bit about yourself, are you on medication, what are your symptoms, when does the RLS appear etc and we will try and give you some positive suggestions? There is a lot of help and advise out there - please don’t be put off by any negativity you read.
Pam
Thank you for that Pam. I am 55 and live in Glasgow. RLS started at the end of June following an episode when I felt very unwell one morning and the nurse at school thought I was having a heart attack as my BP shot up. I wasn’t. But ever since then I have had symptoms of RLS and PLM which seem to be worsening. I have now not slept at all for the past 4 nights - a combination of worry and RLS and have had to call in sick to work - I am a teacher of special needs children. I am going to the doctor tomorrow to ask for sleeping pills to help me sleep as I have read insomnia exacerbates RLS which then makes sleep more difficult. I am also going to ask if Ropinirole is an option as my sister uses this and says it has worked well. It has all come as a bit of a shock as I have previously been very active and healthy and now future looks bleak and I don’t want to drag my husband and 15 year old daughter into this. I am also worried that I will not be able to continue to work.
Something had to trigger it. It is very odd for it to come on suddenly. Lots of us keep journals to try and figure it out. But, you say your sister has it, so you have the genes for it. 70% of all RLS is genetic. You have to get the RLS under control, or sleeping pills will not help if it is really bad at bed time. Many of us take something for the RLS, in combination with sleep meds.
• in reply toCourtney-smythe1963
Hi Courtney, I am 67 and live near Perth ( Scotland ). I was always very grateful that I could keep working with the aid of Pregabalin though I post now warnings about the effect it eventually had on me.
One thing that could be a possibility for you as sudden onset with your severity is rare , is that you might have become iron deficient as that is a definite cause for many so when you see your GP try to ask for blood tests. It often comes on if there have been episodes of bleeding when your intake can't keep up with output but sometimes it's hidden. You don't need to be a actually anaemic but just shorter of iron stores
( measure by ferritin ) than those susceptible to RLS need.
I know it's depressing to see there is no easy answer often for severe RLS but a lot of us, as well as trying to get mutual support from each other, are trying to help avoid unnecessary problems happening to others as a result of medication as there are loads of effects that weren't initially apparent which could have been prevented with current knowledge but many medical people don't know about - it is hard to keep up with all current knowledge in all spheres.
I am a retired GP with severe RLS and honestly, even myself,with a family history, had no idea about most of these problems and had no idea how dreadful severe RLS could be.
So most of folk's comments are not negative apart from when they are frustratedly ranting as they feel so awful, but are trying to prevent others having the awful time they have.
If I were you i wouldn't start with Ropinorole though. It and others in its drug group used to be regarded as first line in the UK but now the other type of treatment eg Pregabalin or Gabapentin is. I'm do afraid that's what I warn about though but a lot of these problems can be averted by being aware not to increase doses if the effect of a current dose wears off.
But don't do what I or others say without medical advice. But do make sure the drs you see are fully up to date and it can do no harm to pass the advice you are given by those on this site as if it is likely to cause problems many here will be aware of it. Very often due to experience we are 'ahead of the game'
Good luck! Try not to get depressed about it. Somehow we all manage to live with it with some form of acceptance which some of the time is the answer
Courtney-smythe1963• in reply to
I was pretty disappointed that my GP would not take on board what I said about iron and she just kept reiterating that because my ferritin level was 68 they would class that as normal and so was not willing to offer me iron. But I went to the chemist and bought it anyway- ferrous sulphate.
I didn’t really understand if you were recommending trying gabapentin or Pregabalin in low doses or recommending to avoid them. It wasn’t clear from your message. Can you clarify please. The GP did offer me Pregabalin but when she said it was only a pian reliever and targeted any other sympton I said that that was not what I needed.
Gabapentin and Pregabalin ARE used for RLS. Pain meds ARE used to treat RLS also. 
• in reply toCourtney-smythe1963
I think in some ways I'm scared to make recommendations because everyone is different and I'm aware of the responsibility of doing so, especially as I was Dr and know the risks of 'lay' suggestions, so I'm really just passing on my personal experiences though I do know that the dopamine drugs have nowadays been replaced in many official guidelines by Pregabalin or Gabapentin.
But not only does your GP not know about the different Ferritin normal as regards RLS, ( I didn't either till I joined this group ) she doesn't seem to know that Pregabalin is by no means only a pain killer, though it is used for nerve pain, but is also nowadays recognised as a treatment for RLS. It is also an antiepileptic.
But what I discovered personally is not widely recognised and may not happen to all, but is now recognised to happen to a few and this was that the effect wore off and I needed a higher and higher dose and it did feel like what is now described as augmentation. So if this happens to you then be aware and i wouldn't keep pushing up the dose.
i also in the end had side effects i didn't want to continue with.
Re the iron, I learnt on this site that it is easier to raise your Ferritin if it is within the usual 'normal' range by taking Ferrous bisglycinate ( I bought on line ) not Ferrous sulphate. The body has a way of blocking iron absorption if it thinks there is enough on board and apparently it is easier to bypass this block taking Ferrous bisglycinate and especially if taken every 2nd day - though actually it should be night as you absorb iron better at night.
Courtney-smythe1963• in reply to
Alison
Thanks for that and as Yakester says, it is good to hear from a GP. My GP was pretty useless and I will need to be more forthright in trying to get them to see that their information is not up to date with current medical knowledge.
• in reply toCourtney-smythe1963
Yes, but as I said, I know how the system works but I have learnt a great deal more from this forum and looking up info from the specialist research and clinical folk, especially in the US than I ever knew before. I've always really heated Drs who won't listen and think they know it all. Once I went to a training day about Diabetes where one of the speakers was an 'expert patient'. It was an eye opener even though I regarded myself as a decent, open minded listener, to hear what it was like on the other end.
Wish none of us had to inhabit the end we are on with anything and especially RLS where no one else 'gets' it!
Yakester• in reply to
Hi Alison7. It’s nice to have a dr on this forum. I don’t know why that makes me more comfortable but it does. I emailed a friend of mine who is an ED (emergency department) nurse and asked how an ED doc would treat or handle an RLS patient. She had no idea what might be done. I’m wondering if you could get a prescription for an opiate pain medication if you went to the ED because that is what would help me for my RLS. I asked her to check. My last two nights have been almost RLS-free. If I could rid myself of anxiety I’d feel human again. I have taken magnesium calcium and potassium the the last few nights. Last night I put on a pair of support-type stockings Will do that again tonight. I also cut out caffeine. I guess I’ll see if I have more good nights.
• in reply toYakester
I mainly mention I was a Dr to say how ignorant we all are about the condition even when we have it ourselves - because mine was only moderate when i was working, and partly because i sometimes stand up for my profession when others complain about our ignorance as it's so hard to keep up to date with all conditions. And then I am sometimes so embarrassed by the bad advice and refusal to listen that i hear about that i want to apologise. And sometimes it might be useful to be able to explain some things like drug costs and patents and how refusal to prescribe sometimes comes due to guidelines.
But often i see that others on here know very much more than most in the medical profession and i have learnt a huge amount from this forum and am on it as i'm as desperate myself for support and advice and a miracle as everyone else - it is just after 3.30am here and this is my 3rd wake up already. i am soooo tired.
But re the ED if yours are anything like ours then no, a prescription for opiates won't be given. ours are only for real emergencies and they avoid prescriptions especially opiates unless for eg broken bones as it would lead to flocks of addicts who are adept at faking, appearing at the door which used to happen till strict rules were brought in.
hope you find some peace. At least it seems we are mainly being taken seriously by the researchers these days and i just keep hoping that new and tolerable treatments are just round the corner.
i also look forward to my often 2-3 hours sleep up till 10am when my legs and the rest have often come to peace.
Good luck. X
Hi and welcome. As your RLS only started recently did anything change especially medicationwise? Did it coincide with starting new meds particularly antihistamines, antidepressants or anti sickness meds? Have you recently stopped taking strong painkillers? Have you had surgery recently? X
Hello Pippins 2
No I was not on any medication nor have ever had surgery. I had never had any symptoms prior to this event.
Hi I have never heard of RLS coming on suddenly in those sort of circumstances,very strange. You do say your sister has RLS so good chancethat you have the genetic form know as Primary RLS as opposed to Secondary RLS caused by eg meds, pregnancy, low ferritin etc. If you do go on Ropinerole stick to the lowest dose possible don't increase over 1mg to help avoid augmentation (worsening of RLS caused by the med itself ).You could try Pregablin or Gabapentin instead or Co. Codamol. Good luck x
I don’t understand ... how else would rls come on ? U don’t have it ..then u have it .
• in reply toSvengolly
"normal' RLS comes on gradually though usually. You might have it mildly and intermittently and then if you're unlucky it gradually worsens with time. It must be very rare to come of suddenly and severely
Svengolly• in reply to
Why do u say MUST ?
• in reply toSvengolly
I don't know why I used that expression, just a figure of speech that felt right at the time. Means in my experience and reading is rare to start suddenly and severely without a sudden change in circumstances, health, biochemistry.
Primary RLS I think usually starts gradually, occasionally, not severe & gets worse over time & with advancing years.
So those with sudden onset & severe symptoms are more likely to have an identifiable cause which if they're lucky might be reversible
Mine started at age 63.
HI, noooooooooo, when RLS starts suddenly like that, it is RARE. Most people who have Primary RLS, have gone from mild to severe over a period of years. If it starts suddenly like that, the answer usually is that you started a med that might make it worse, or something else. But, RLS , 99% of the time is a gradual thing.
Secondary RLS can come on suddenly, unlike primary RLS, and usually in middle-age. Here is a little information. The good news for secondary RLSers is that, although it may be quite severe, it does not seem to worsen over time,
Something will 'switch it on'.
Hi Courtney-smythe 1963, I like Pam's reply to you below. I doubt if we would be on this support sight if all were sunshine and roses. It has taken me years with my own severe personal stubble to join. I should have done it sooner. What a relief for me to see I am not the most severe case, as my doctor said, he ahs ever seen. Just when I at the end of my rope I seem to find one more knot to hand on to. For many many years I was controlled on various drugs. A few years ago I "augmented", a old word with a new meaning. Many of us have done the same. We are desperate and reaching out. We all share the failures as well as the slm successes but would not be here for long if all we just fine. I see below you are 55 years young, a teacher and just starting on the journey. My prayer for you is that you get off the train soon. I took requip for several years with out side effects, then I augmented on that and got 75% of the side effects. Since you are newly symptomatic, most drugs will most likely help for at least some time. Do post what your doctor recommends, do your own research and keep posting the good and the negative. Blessings and peace, Auntie Sioiux
Thanks auntie Sioux. If medication keeps me going for a few years until my daughter is through university that would be a relief. Then, I can take it from there. Maybe by then treatment might have moved on.
Read these before you see your doctor. As I have said before knowledge is power. Many doctors are ignorant of RLS.
rls-uk.org/augmentation-reb...
You talk as if you life is over, really it isn’t. I live a perfectly normal life, I work in a school too, like walking, love my grandchildren and my dogs. Yes there are days where I feel under par or haven’t slept or my legs have been playing up but with my current treatment they are mainly under control.
As I say, read all you can, then see your doctor. There may be a perfectly obvious reason why this has started and it may suddenly just go away again. Please don’t despair.
Let us know how you get on.
Pam
Pam is the Pregabalin you take for pain relief only or does in reduce RLS symptoms. I don’t actually have any pain just what I would describe as discomfort.
I don’t have any pain at all, just unbearable discomfort and the need to move my legs.
I’m in week 3 of Pregabalin (150mg) and it’s working really well. I’m not going higher although you can go up to 300mg. After my experience with Ropinirole I want to keep it low. If this fails then I will speak to my doctor about supplementing it with a low dose opioid. Sometimes small doses of several drugs work better than just one high dose. Several people on here can testify to that.
That’s my experience, what works for me may not work for you but you have to give any drug time to get into your system. I understand Pregabalin has to be in your system 4-6 weeks for full efficiency, I think I have been very lucky to have such quick results.
Hope that helps - message me any time. I’m back at school next week so may not be able to answer so quickly!
Pam
I wish I’d seen your reply before I went to the doctor. The doctor actually offered me that when I showed her the article about these drugs being the first line choice over DAs. But she said they were for pain relief only and did not address any other symptoms so I said that was not what i needed. I will phone on Monday and say that I have changed my mind and will try them.
Thanks for all your help Pam. Enjoy being back at school.
I am in the US, I have had RLS for years untreated as I hate medicines effects, I HAD to do something, tried the ropinirole. It works for some but is NOT an as needed medicine( as I was told) It worked for a few days and then made my RLS %200 worse, the more meds I took the more I needed. This is rebound and augmentation. AWFUL! I am a single mother of 3 teenagers. I have to work. I have to sleep and function. (RLS is not the end of the world). neurologist put me on a very low dose of gabapentin in the evening. I am SLEEPING without RLS. So far so good. Good luck do your research before taking any medicine. But try what you can as everyone is different.
Oh sorry I also take iron, (mine is 58-75) although I have not been able to increase the levels with oral supplements.
What are you taking to increase your iron as the only way I know of is iron supplement tablets. I know in the US you can get infusions but not here by all accounts and anyway my GP said she was not prepared to give me any iron as my ferritin was 68.
Iron supplements. The same. 68 is ok for average people, per the doctors I have seen is what the want RLS sufferers to be higher. ( I have no idea why)
I do not have any more or less RLS when my iron is lower. It is the ferritin serum.
Can you get ferritin supplements anywhere.
Yes amazon or a pharmacy it’s just like vitamins. Does cause slight constipation.
And the doc suggested one every other day as the body absorbs it better.
• in reply toCourtney-smythe1963
ferritin is how iron is stored in the body and is reflection of how much iron you have on board. you have more naturally if you have more iron in you
They are used for chronic pain sufferers who take it throughout the day. But they are also found to help people with RLS, obviously we just take a dose in the evening.
As your doctor seems to have little idea I was told to start on 50mg the first night, 100mg the second and then up to 150mg a few days later if I needed to. I found I was getting benefit within a few days but for others it can take 4-6 weeks for the full benefit to be felt.
I suffer from the occasional PLM but it’s more the unbearable need to move my legs and it really is unbearable. It causes both stress and anxiety and makes life utterly miserable! I find the app Headspace is very good - we recommend it to the students at school too. It’s about the only mental health help available to them these days!
Hope you get sorted Monday.
Pam
Also Pam, can I ask if you have limb twitches PLMS, as these are the things that are preventing me getting off to sleep, more so than the crawling sensations. I could live with the crawling but every time I feel I am relaxing into sleep my leg jerks involuntarily enough to bring me back to full wakefulness and then I can feel my heart race as I panic that I have lost the chance to drift off again,
I’m wondering about your reply and RLS. You say you could live with the crawling feeling but the PLM is the problem. RLS gives the unbearable urge to move your legs and not something you could live with. You HAVE to get up and move. Do you think your problem is more PLM than RLS?
It is most important to get your serum ferritin checked (get a blood test at GP). Low iron levels can cause and/or exacerbate RLS - perhaps your iron levels dipped dramatically around the time of the suspected heart attack and this triggered your rls.
Many many people find their symptoms reduce dramatically when they raise their serum ferritin. This can be done taking oral iron (iron bisglycinate - aka ‘gentle iron’ - is what most people on here take - can be bought online or in Holland and Barrett and good chemists). Even more effective is an iron transfusion but it is difficult to obtain this in UK. It is now a first line treatment by RLS experts in the US for severe sufferers.
When getting the serum ferritin test results make sure to get the actual number - not just ‘normal’. RLS sufferers should aim for over 100 whereas ‘normal’ can be as low as 20.
If raising iron alone is insufficient there are other meds. If your GP suggests ropinerole, rotigotine (neupro) or mirapexin (pramipexole) - these are dopamine agonists and are initially very successful in treating rls for the vast majority - make sure to stay at a really low dose - do not be tempted to increase if symptoms worsen. Instead get a different drug at that stage.
Most people find that sleeping medication does not help much because the untreated rls still wakes you up but it is more difficult to cope with being awake as you are wiped out by the sleeping med. by all means try it but don’t be too disappointed if it doesn’t solve your problems. On the other hand you are correct that it is important to get some rest - symptoms definitely deteriorate as you get more tired.
Have you tried magnesium - either as a spray or a supplement? Many find that this helps. Also solpadeine or other codeine meds. There are numerous other coping tactics that people find very helpful. A diverting activity such as a computer game can result in several hours of relief. Gentle yoga type stretches are also often good for banishing the urge to move for a while. People also find very hot or very cold water applied to the legs helps a lot. Apple cider vinegar, rooibios tea, ldn, a cup of coffee, no coffee, various specific types of exercise, and so many more suggestions are dotted through this site.
It is well worth informing yourself though because the medical profession is often very uninformed about the condition and the treatments.
I cannot believe how helpful you have all been. Thank you so much for taking the time to give all that advice. I did have my ferritin levels checked and they were at 68 and when I saw the doctor two days ago I said that as it was under 75 that was fine. I am at the doctor this morning and so will say I am going to take additional iron to get me up to the 100 you suggest. I started mindfulness yesterday and actually got 2 hours sleep last night, albeit in 30 minute bursts but better than nothing. I have also been taking magnesium for a couple of weeks and vitamin b complex.
Getting the ferritin above 100 is really important.
Courtney, I think you will find lots of help here, but we do rather have Gallows Humour from time to time. Not sleeping does that!
As Dancer suggests, your first stop will be to have your serum ferritin levels checked, and get them up to 100 at least. If they are really low, it may be appropriate to get an IV Iron infusion.
Then perhaps check hormones, sex hormones and thyroid, both of which should be optimal.
Don't be afraid of the meds. Most of us are here because we are trying to do a balancing act between meds, getting the right doses of the most appropriate meds for our own circumstances.
Unlike Dancer, I would say by all means take a benzodiazepine for a short while in order to get a little sleep and help you over this difficult bit. You must sleep in order to work.
Also, you could ask your doctor if you may try a dopamine agonist for a couple of days. It is problematic as a medication, but it is useful as a diagnostic tool, and if it improves your condition then you very likely have RLS.
If indeed you do have RLS, see a sleep specialist if you can.
Stick with us, we are not half so scary as you think!
Hi Parminter
Thanks for your advice. Do you think DAs are better than the Pregabalin or gabapentin as they have less chance of augmentation.
DAs will almost always augment over time. Faster for some than for others. The figure is something like 8% per year, on average. The patch is much slower to cause augmentation. DAs are wonder-workers, but you have to be careful to keep the dose as low as possible, don't be tempted to increase, whatever your doctor says. (Their knowledge is mostly about ten years out of date).
The alpha-2-delta ligands will not augment, are more useful for sleep, but come with their own set of (possible) problems, such as weight gain and depression.
Some people juggle a small amount of a DA along with a small amount of an A2DL, in order to reduce side effects to a minimum.
The new kid on the block is dipyridamole, which I'm sure we will hear more of in the future.
The thing is this - RLS has TWO faces, one is akathisia (the movement disorder part), the other is insomnia. The first is caused by the dopamine receptor problem, the second is related to a lack of adenosine, which causes hyperarousal. The one does not cause the other.
At the bottom of it all is the iron problem.
Courtney, there is this to make you smile - at least this disease is not boring! It's so complicated that the best of the best specialists have not got quite to the bottom of it. Yet.
And when you realize that it is all in the brain, not the legs, you don't feel quite so idiotic.
And you can say, gravely, to those who give you endless silly advice, ' I have a familial neurological disorder of complex aetiology, which is being researched by the best minds on the planet'.
Courtney the Dopamine Agonists with the lowest rate of augmentation is the Neupro patch. The reason GPs don't mention this is because it is very expensive in comparison to the Dopamine Agonists meds. I took in information to show my GP why it was favourable over the meds and pleaded my case. I got it prescribed on the NHS. X
A very few years ago I was bleakly pessimistic, but that’s changed. RLS is being taken more seriously by medical science. More complex chemical contributors to RLS have been identified, and more RLS-focussed drugs are possible. Also in pain research a drug is being developed that stimulates the brain to produce opioids. This might get rid of the addictive side effects that make OxyContin a bit dangerous, and hard to get from doctors. So my view is that current drugs are a holding operation until much better alternatives come on stream. Oh, and cannabis research is another promising area. So a smile had dawned on my formerly troubled kisser.
Ditto everything the good people above have advised. This forum can seem depressing and bleak but that’s because a lot of people posting are desperate for help because the medical profession is still ignorant about RLS- particularly Augmentation.
However, the help and support is wonderful- and the wealth of knowledge invaluable.
I hope you stay with us and hear some of the positive news- there is quite a bit.
Take care.
Jools
Thanks Joolsg. I am just off to the doctor armed with all the information you have all been kind enough to send.
Stay positive- I got my serum ferritin up to 204 from 65 by taking ferrous bisglycinate orally and in skin patch from PatchMD every other night and my RLS is largely under control with help of meds as well.
If you go down the dopamine agonist route keep to the lowest dose.
Good luck
Jools
Jools, did you find that getting your ferritin level up that high noticeably helped resolve your RLS symptoms? Or is it a bit hard to separate that effect from med changes you may have been making? I had an iron infusion 2 weeks ago, and really tried to keep my meds the same so I could assess the effect of that. But in the interim, my 3 mg Neupro patch went all pearl-shaped, and I simply had to make med changes to stay afloat (increased a2d and added low-dose pramipexole). I do hope to eliminate all DAs in time, but I want to let the iron do its work first, possibly to include a second infusion. Thanks.
I’ve been off dopamine agonists for 2 years after severe Augmentation and withdrawal. I’ve been on pregabalin and OxyContin for 18 months and until 5 months ago was still getting 2 episodes of RLS every single night despite such heavy meds.
5 months ago I switched to a vegan diet having read Raffs’ post that it helped his RLS. BUT my ferritin increased from 140 to 204 in that time.
My RLS has improved- I now get RLS 3/4 times a week and occasionally have 7 nights in a run completely RLS free.
The conundrum is to know whether it’s the vegan diet or the increased ferritin that has caused the improvement.
I do intend to test it by eating animal products again but I will find it hard- my views have dramatically changed and I would feel terrible eating them again. As a former bacon butty lover I never thought I’d say those words.
My suspicion is that it’s a combination of both.
Ha - me too. I’ve been veggie for 20+ years and know what you mean. It’s not that I see anything wrong in eating organically happily reared animals that can run on grass, see the sky and breathe the air but this awful intensive, no care about the animal welfare, meat we farm makes my stomach turn and my heart feel heavy. But that’s for another forum 😊
My RLS doc told me it can take 4 weeks for the iron infusion to really begin helping.
Dont despair ... .many people including me do cure they’re rls by raising their Ferritin levels . In the meantime many people respond great to a certain drug . Most people here are here because they sadly fall into the harder too treat group .
Hello Courtney,
I am from Glasgow too but live in France with a French husband. I need a dose of Glasgow regularly, so go often.
This forum is great. What a relief to find it after years of battling on alone.
Anyway, there doesn’t seem to be a solution which works for everyone. I have augmented on all 3 dopamine agonists and am now on Tramadol only. It’s working enough for me to cope but certainly not 100%. I do hope you find a solution. A friend who has it went to the Homeopathic Hospital in Glasgow and felt it helped.
Good luck.
It is a beautiful day here in Glasgow and am just about to go for a walk in pollock park.
Happy memories. My family are Southsiders - Langside and Clarkston. When I go now I stay with my sister, just off Byres Road.
Hi Courtney-Smythe,
Welcome to the page for Restless legs Syndrome. As Pam said, a lot of the people on this page are at "the end of their tether" having been "abandoned by their doctors who don't know anything about this condition.
I was one of these people as I got the symptoms and not thinking it was any sort of "illness". As it continued I decided to consult my GP. At the appointment the GP said all she could do was prescribe "Antiparkinson" tablets. She then just told me to go and find some more natural ways to overcome the jerks.
I promptly tried to find any such "magical cures". This (as I'm sure you've guessed), did't work, BUT I did notice that when my legs got warm they jerked. I did find that the mats that kept my legs cool did have a good effect and while cooler, I didn't get the jerks. However, the mats only worked while they were cool and as my legs quickly got hot they lost control. I did find a system where a mate was kept cool with a system of small tubes running all through and the temperature could be controlled so I could get it as cold as I wanted it.
This has become my support system. I went back to another GP who promptly referred me to a neurologist at the local hospital and together we've worked at regulating the symptoms. I do still use the bed-cooling mattress and wouldn't be without it.
You asked for some positive details, I'd say that the first GP I saw pushed me into trying to find out some things for myself. I felt this gave me more confidence when discussing treatment with the neurologist and the GP.
Please keep in touch, the people on this each have some very useful knowledge that they are willing to share,
Regards,
Lindy
On a positive note. I and a few others have found that they can control rls with carbohydrate controlled diets, and in my case Vit B12 supplement and the avoidance of sorbate preservatives ( E202 and the like). What I mean by carb controlled is the avoidance of foods which raise the blood sugar. i.e. of refined sugar and sweetened foods like sweets, deserts, ice cream soft drinks etc. Also foods rich in simple carbs. Doctors usually warn diabetics that things like deep fried chips and other deep fried foods have this affect. I can eat fish and chips once in a day, but if I then have a deep fried snack late in the evening I will have mild rls when I go to bed. Magnesium supplement does help to some extent and I don't think a magnesium supplement would do any harm to most people, as long as it's within recommended limits or it may cause hypomagnesia, but that's quite rare.
I believe this reason that high levels of blood sugar causes rls is because it causes inflammation in the nerve receptors, so it needs to be kept within limits. Vitamin b12 has anti inflammatory properties, so it can work against the effect of high blood sugar to some extent. Vit b12 is known to be low in most western diets. Some say that this is the fundamental reason that the Mediterranean diet is so healthy.
If you have the patience to read some background you might like these links which I found after I found that it worked in practise.
whoami.sciencemuseum.org.uk...
I have severe RLS, which came on over a 3 month period. I had an occasional flare up, maybe once every other week, before RLS kicked in with a vegence. By the third month I was having RLS 24 hours a day. I was a mess and went to see my GP who prescribed Requip, which helped almost immediately. I have been on 2mg a day for three months now. I will say I have had times when I wanted to increase the dose, as my legs would start feeling twitching. I took a deep breath and took several drops of CBD oil. If that didn’t relieve the twitching then I will take 1/4 Xanax. Sometimes I will use a marijuana mixture of 2-1 THC/CBD, which I prefer over the Xanax. (Just became legal I my State). I have noticed caffeine, sugar and stress has a huge affect on these “breakthrough” episodes. It was very hard for me to read a lot of the posts as it caused more anxiety. I have realized that by knowing other people’s struggles, I am better able to be proactive with my RLS. I know this is long but I needed to let you know I like positive posts too but you need to hear the reality and proceed from there. Have a complete blood test to rule out deficiencies.
Hi Courtney
Sorry to hear what you are experiencing. I think a referral to a sleep specialist would be a good starting point. He/she can have your iron/folate/magnesium level tested? They may also refer you for a sleep study. In the meantime prescription sleeping pills might help as it is hard to think clearly when sleep deprived.
In my experience of having off the charts PLMD, my advice would be to not be scared of the medication that is available. Even though there are side effects (as with most meds) generally they're easier to deal with than sleep deprivation. I started on Pramipexole and that worked well for a while until I experienced an increase in symptoms. I now take Pregabalin (Lyrica). That helps a lot. I also take sleeping pills (temazepam or clonazepam) in addition to the pregabalin when I need a good nights sleep.
My understanding is that opiates are generally prescribed when other treatment approaches don't work (ie last resort). All the best. Anna
Courtney-smythe1963• in reply to
Anna
Are you in the uk? My GP was really unwilling to give me the 7 sleeping pills she gave me and said that that was absolutely all I would ever be given. This after me telling her that I had gone for 5 nights with no sleep and had had to phone in sick to work as I was no longer able to function as a teacher. So the chances of me getting anything like this type of medication is remote!!
Hi Courtney, I'm in Perth, Australia.
It sounds like your GP has no understanding of your condition. I have a good GP here and he prescribes sleeping pills (clonazepam or temazepam) knowing I don't abuse them. I'm not familiar with your health system but could you possibly find another GP?. Like you, on many occasions I have gone a week at a time with really poor sleep and the longer it goes, I feel like I reach breaking point. Sleeping pills aren't a long term solution but they can keep you sane while you investigate other avenues. While I was pregnant and couldn't take prescriptions meds, I took ultra high doses of magnesium (from memory 1600mg) and occasionally fenergen (an antihistamine which paradoxically can contribute to restless legs but can be good for a night or two). Given that your restless legs has come on suddenly, a sleep specialist might help investigate your condition. They may also be able to prescribe whatever you need to function. I think you mentioned vitamin B. I find I have to take it very early in the morning otherwise it keeps me awake at night.
Good luck and feel free to ask any questions as along with the other posters on this site, we have a good understanding of what you're going through.
Hello,
I have suffered with RLS for over 30 years, and have lost hours of sleep. As it became far worse over the last few months I went to my GP a few weeks ago and it resulted in me having a range of blood tests taken.
The results were that I had Iron Deficiency Anemia and was put on iron tablets. Within a couple of weeks my RLS had just about disappeared, I cannot believe that I have suffered all these years and have now found the possible cause. My family on my dads side also suffer with RLS, so it's possible I might get it back but at the moment I'm sleeping with no torturous legs!
Hope this helps.
Lucky
That’s wonderful, Lucy (the relief I mean - not the years of unnuecessary torture!). It is worth being aware that in many rls sufferers iron spontaneously depleted over time (quite quickly in some cases) so get your serum ferritin checked from time to time to avoid a relapse.
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