Where to go from here?: I would... - Restless Legs Syn...

Restless Legs Syndrome
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Where to go from here?

I would appreciate a little help in deciding what to do next.

In summary, I must have had RLS for at least 30 years but it wasn't really a problem until about 12 years ago when I wasn't able to get to sleep, every night.

My GP referred me to a neurologist. I had a choice, a long wait for one with a good reputation or a shorter one for one with a poor reputation.

Desperate, I chose the shorter wait. The reputation was deserved! I was quickly examined, confirmed diagnosis of idiopathic RLS, no explanation, no advice. No mention of iron levels etc. I was prescribed Pramipexole, which was brilliant because I vaguely had believed there was no treatment for RLS. I was told to start on 0.088mg tablets, one to start, but could go up to 6 tablets. How's your maths?

Pramipexole for me was a miracle, at first, you can guess what happened as time went by.

Symptoms at one point got bad enough, (not sleeping), to seek another neurology consultation. I saw a more pleasant one who suggested a short course of Clonazepam. Which although not dramatic in its effect did help.

Time passed. There is probably a difference between passively giving up and "acceptance", I think I've experienced both. Certainly, I've only really got desperate with RLS when I'm REALLY not sleeping well. I accept some chronic insomnia and life, in the last 9 years has been somewhat bumpy anyway.

This has included marital breakdown, acrimonious divorce, financial concerns, a cancer diagnosis and treatment, relationship problems, recognition of 80% probability of suffering autistic spectrum disorder, (Aspergers), developed spinal nerve problems and so on, - life!

Things are good now, found new romance and celebrated third wedding anniversary last week.

I can't remember now how long the pattern has been, that I can get to sleep most nights, (unless forget to take the Prami), but wake up very early. If I try to have a catch up nap during the day, forget it, instant twitching! Nonetheless. on the whole felt no great desperation and accepted chronic insomnia and daily bouts of twitching in legs arms, shoulders etc, at any time of day (except after taking Prami). In a way, the twitching is exercise without effort.

I use ALL my waking time constructively, sleeplessness can give you time to get things done as long as they don't disturb others.

In 2017 an MRI showed my neuropathy symptoms were due to a compressed nerve in my spine, ( not the metastases it could have been). My GP prescribed Amitriptyline.

In 2018, the neuropathic pain got terrible, GP stopped Amitriptyline and prescribed Gabapentin, a short course of Naproxen and Codeine Phosphate for acute pain. The Naproxen and Gabapentin worked and got the neuropathy back under control. The codeine didn't do anything, so only took it twice. Was reluctant to take higher dose of Gabapentin after reading about side effects.

It was at this point that I first heard about a) augmentation b) exacerbation of RLS by Amitriptylne and c) Gabapentin helps RLS.

Mistakenly believing or not, that Gabapentin could help me reduce the Pramipexole, I did that very very slowly between September and November from 3 X 0.18 to 2 X 0.18 with no really noticeable difference.

However in November started REALLY bad insomnia, Eventually, a visit to GP in January resulted in a prescription of 10 tablets of Zopiclone. I asked her for help reducing the Prami, was advised to seek a private neurologist and wax told no GP was going to prescribe any opiate for RLS. She did say she'd look up augmentation as she'd never heard of it.

Luckily, the insomnia improved, Getting 5 to 6 hours average sleep, and don't have to get up when it's dark. Never taken the Zopiclone. Looked for a private neurologist, but the only one I could find, guess who? He still has a bad reputation, but still practising!

Despite lack of any reasonable accessible medical support I have now further reduced Prami from 2 X 0.18 tabs to ONE X 0.18 tab.n

RLS symptoms are now not as bad as they have been. I'd say mild symptons, daily, still can't cat nap, but thanks to free bus pass, can fall asleep on the bus. (I'm not moving, but the bus is!).

Get very irritable, but not sure if this is sleep deprivation or the Aspergers. More likely the latter.

Long story, my story and I hope youre still with me.

I have been a student, and teacher, of psychology since my late teens, with a career in health care and think the psychological aspects of health, illness and well being are often neglected or underestimated, by a significant number of people, a significant amount of the time. After all, you can't see something psychological, you can't do a blood test and despite medical research the pharmacopeia remains crude. It's more (psychologically) comfortable to think there's something purely physically wrong with you rather than consider that there might he something psychologically "wrong", although "wrongness" shouldn't come into it. It's easier, (less expensive), for Dr and patient to prescribe/take a magic medication than it is to undergo self development.

(PLEASE NOTE, i am NOT saying RLS is all in the mind and I am NOT saying it can be "treated" purely psychologically. Like many physical conditions, the psychological element is how you cope with it.)

I do believe that I might suffer a lot more from my RLS symptoms if I wasn't so accepting if them and haven't "struggled" with them.

After all there is no ideal magic medication.

So what next? Should I go for completely stopping Prami knowing it's such an uphill struggle and difficult to get medical support, or should I just accept where i am? At least for now.

43 Replies
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Wow!!! What a story.😅

Concerning the Prami-- I'd be inclined to continue the final step to get off it completely, especially since you have achieved so much in getting this far.

It would get one possible factor out of the way. It will take time, but you have done well so far.

You know my usual spiel about iron, ferritin and triggers, so I won't repeat all that.

Can't comment on the irritability, but anyone with lack of sleep, will be a teeny weeny bit irritable.🤠

Mindfulness can help with that, if you have the patience.

Hopefully you will find some expert ,who has the power to prescribe correctly, to get full relief.

All the best.

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Thanks Madlegs, patience is not MY virtue. Mindfulness helps. Irritability varies between being just under control (sleep daprivation), to feeling attacked by the world and people in it.

Yep, ferrets and stuff.

Thanks for the advice.

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Hi Manerva

Just checking the thread isn’t 3 years ago 😂

I don’t really have much to say apart from I wouldn’t be so accepting and I would get off the prami.

I can only repeat my experience. Before I started ropinirole I just had evening and night symptoms. Going to the theatre or to watch a film was a nightmare. Ropinirole was a miracle. At first. Then symptoms became worse and started earlier (lunchtime) and doing anything after this time that involved sitting down was impossible.

To cut a long story short I came off the ropinirole and eventually (after a year on Tramadol) ended up on 150mg of Pregabalin that I take in one dose around 8pm. I got my life back. No more RLS in the afternoon or evening, I can go watch a film, sit in a pub, just relax and watch tv.

I think what I’m trying to say is you don’t have to put up with where you are now. I get a good quality of life (and we never know how long it will last - so take it), yes there are side effects. A few minor balance issues in the night, a bit of daytime sleepiness (but most drugs cause that and at least I’m sleeping and can cat nap!) and I’ve put a few pounds on. This is under control and i eat a healthy vegetarian diet and rarely drink. Life is good.

I realise I’m a bit of an advocate for Pregabalin and it doesn’t suit everyone and who knows how long it will last for me (10 mths so far) but I’m just saying..... In a very long winded way I don’t think you should have to put up with how you are feeling. I think it could be better!

Pam

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Thanks Pam, I actually can watch films etc but it certainly seems that I could eventually replace Prami with Gabapentin. It's possibly better to aim for something, than to aim to get away from something

Thanks for your "current" advice.

Maybe it was fated that I contacted you 3 years ago (in cyber space), when you began your journey and to see, 3 years later, how well you've done.

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Manerva i agree with the others, getting right of the prami i also think should be done. As for your doctor saying no doctor will prescribe a opiate is wrong. I am in the UK and i get Tramadol from my doctor, i am prescribed 100mgs a day but only take one 50mg, 100mgs it too much for me.

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Thanks Elisse, I will try again another GP if needed and take information with me. it does depend on the individual.

In the meantime, I have a stash of Clonazepam, Zopiclone and Codeine Phosphate. Though I'm not into cocktails and quite clear what's acceptable to me and what's not.

Thanks for your encouragement.

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I second the others as well. Both in getting completely off the prami and in the potential of other treatment options as well as you attitude. Re the alternatives: Either gabapentin or pregabalin if the former higher doses don’t suit you. Gabapentin didn’t suit me above 200mg and after a long time on 100mg I have dropped that too and feel a bit better without it. Or painkillers. I cannot comment much on the possibilities in the UK as I am Dutch and living the NL. But I do want to remind you of the licensing of Targinact (oxycodon slow release combined with nalexone) for RLS by NICE. This should allow any gp to prescribe Targinact - if you want to try that route. I am currently doing well on 10mg oxycodon slow release, apart from daytime tiredness or ‘heaviness’ (different from sleepiness). Keep posting!

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Thanks Lotte. I am aware that Targinact is licensed for RLS un the UK. It's the GP that isn't. I'm sure that if necessary I would be able to persuade someone to prescribe an opiate if all else fails. I am still reluctant for the time being. If not, I know some people who might be able to pull some strings.

I currently take 300mg Gabapentin with no noticeable problems. It's prescribed to be taken 100mg 3 X daily, but I take 100mg in the morning and 200mg evening. This was originally for neuropathy and at one point I was on 900mg. I'm sure I could persuade a Dr to increase it again if necessary. (If I can get to see one!)

Thanks for the advice.

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Incidentally, I have just confirmed that Targinact is licensed for use with RLS in the UK. Since 2015. It is the ONLY opiate licensed for RLS. Evidence is given by the National Institute for Care and Health Excellence supporting its use albeit not "enthusiastically".

BUT, I live in the county of Lancashire and the Lancashire Medicines Manaegment Group have blacklsted it. It seems quite perverse that the only licensed opiate, recognised as effective is banned!

I'm inclined to set uo a challenge to that! t's not that I particularly wish to take Targinact, or need to at the moment, but I think I should have the right to choose it, if necessary.

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Maneva yes Targinact is licensed for RLS use in the UK by NICE. I asked a doctor at my surgery about it a long while ago now, and she said she couldnt prescribe it as she had no experience of it, (i wasnt asking to try it as i know it would be too strong a med for me, was just enquiring) She said i would have to go to a pain clinic. And yes its been taken off the meds list. the Tramacet i also have prescribed for me, they wanted me to drop it, it was also on that list, as no need to take tramadol/paracetamol in one pill when you can take Tramadol AND paracetamol separately. I told them, you cant take away a med thats working for me, you do that and i dont know what i will do, i cant take Tramadol on its own (at the time i couldnt) I thought i would have to have a huge argument with them, but they said i could keep it. Its all down to money. they are trying to save money on certain meds. The list i saw had a long list of meds they were stopping.

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In April 2017 it was proposed to restrict the prescription of 3,200 OTC drugs by means of official guidance from NHS England, and to add 18 treatments considered to have 'limited clinical value' – including homeopathy and herbal treatments – to the banned list. The 10 items of low clinical effectiveness:

Co-proxamol.

Omega 3 fatty acid compounds.

Lidocaine plasters.

Rubefacients.

Dosulepin.

Glucosamine and chondroitin.

Lutein and antioxidants.

Oxycodone and naloxone.

Homeopathy items.

Herbal medicines.

7 items which are clinically effective but not cost-effective:

Liothyronine.

Doxazosin MR.

Perindopril Arginine.

Fentanyl immediate release.

Tadalafil once daily.

Trimipramine.

Paracetamol and tramadol combination product.[11]

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Im so sorry Manerva I dont know the answer to your question I wish you good luck in finding your answer

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Thanks Sara, that's kind of you.

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Youre very welcome very good luck

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Yes, I recall NHS England issuing that guidance. Lancashire Medicines Management Group, I know, had already blacklisted some on that list before NHS Englands guidance. I was personally affected by the ban, as I had been using one of the medicines on the list. I was in a position to challenge the group on the decision and they gave me their rationale for the decision and a copy of the evidence on which it was based. I was told not to tell anyone I had been given the information!!!!!

The rationale I was given was that the particular medicine was "no more effective than the alternatives". However, I asked effectiveness in achieving what? The evidence they gave me was actually poor, outdated and really, not relevant to the reason I was taking it for. The real reason was obvious, the cost. At the time it was still under patent and no generic version was available.

The issue is, I believe that in the drive to lower costs, medicines are being carpet blacklisted for all uses because can be shown that they are not "effective" in treating a particular health problem, whereas, they are used, effectively, for other conditions. This is for example saying, you can't have Targinact for your RLS because it isn't effective for relieving pain

What a mess!

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Hi I presume you have tried all the things in the list I sent. Ferritin up to 350, the exclusion diet. Of course getting your ferritin up is another fight with the authorities! I wish I could help in some other way.

Graham

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Thanks Graham.

Yes, yet more fights!

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do believe that I might suffer a lot more from my RLS symptoms if I wasn't so accepting if them and haven't "struggled" with them.

Hello Manerva

I can see what you are saying above.

However, I do feel that nobody should have to suffer extreme RL, when there are effective drugs out there. The psychological effect of pain/RL or any other disease that disallows sleep is profound and as you stated should not be underestimated. GPs are prescribing Opiads for RL. I have Longtec which has changed my life, enabling me to sleep every night! Essential especially because I have CFS as well. Have you had a look on recent reports on the RLF website re Opiods and RLS?

Hope all goes well for you

Jane

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Thanks Jane, I agree that for severe RLS effective meds should be available and would never suggest that psychological measures can treat physical conditions. Psychological aspects are about how we "cope" with a condition. Even if treated. There aren't any universal perfectly ideal medicines for RLS (and many other conditions).

As an example, there was quite a lot of research around patient's experience of acute post-operative pain in the 1970's. It was found that patients who were given appropriate information (a psychological intervention), pre-operatively reported less pain, used less painkillers, mobilised earlier and had quicker wound healing. They were never denied painkillers, they just didn't need as many.

The idea of acceptance, around which there does seem to be some evidence, is a more recent interest. Although not intended to treat symptoms, it has been found to reduce them.

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Hello Mandriva

Please research magnesium deficiency and symptoms of magnesium deficiency also vitamins d3 k2mk7 good luck

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thanks Robert.

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Please research shingles virus it can cause disc movement ie nerve pressure

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Sorry Robert this is not correct. Shingles is a virus which occurs in the distribution of a specific peripheral nerve. It causes a characteristic blistery rash and pain within that distribution. It doesn’t affect intervertebral discs.

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The shingles virus is one of many causes of rls but thank you for your input if you ask your doctor he can’t tell you what causes it

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I’m sure others will correct me if I’m wrong but I have never seen any reference to shingles causing RLS. Some RLS drugs are used for nerve pain following shingles however

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Thanks again, there are quite a few causes of secondary RLS. I don't know if shingles is one of them or not. If it is, doesn't really help as there is no treatment for the virus, only treatment for the pain e.g. Gabapentin.

As it happens, I've never had shingles anyway

and

idiopathic or primary RLS is constitutional, not like a disease that has a causative agent. It's just the way we are.

As for shingles and intervertebral disks. Again I haven't had shingles and my neuropathy, as confirmed by MRI, is due to osteoarthritis. I take gabapentin for the pain it causes.

Gabapentin appears to be quite versatile!

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Trazodone 25mg along with Methadone 5 mg should resolve it all! Good luck

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Hi Milefulano, thank you for your thought.

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Gee whiz that a story -you are in real stress aren't you. I do feel for you. I dont take any of the medication at all & so I cant really say or give any advice on it . All I can say really is please try to be positive -it might not help you or be a comfort -but its all I can give .

In your question Hows your Maths? -Mine is None bloody existent lol. I have what is known as dyscalculia which means having severe difficulty in solving Maths problems /& calculations -not knowing the process I mean -before an answer is known

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Hi Sara, thanks for your kind thoughts. Don't be too concerned about me, I'm not as stressed as you might think.

Sorry to hear about your dyscalculia. It seems that as human knowledge has developed we have discovered more and more things which can be different for us, dyscalculia, dyslexia, dyspraxia, attention deficit, autism etc. It is good that these things are known because otherwise, in ignorance we'd think there was something "wrong" with us.

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Hi Manerva . Ok I found at primary school age that I had a natural flair for learning a language & because learning French was mandatory I decided to work on it so I could come out of school with some sort of qualifications.

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That's great, often people that have a "dys" also have a flair to make up for it. Dare I say, my best topic at school was maths.

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that was my worst -as soon as I got to senior high school I saw the opportunity to drop maths & quickly dropped it like a lead balloon & got on with my languages

Very good luck

sara

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I have been following your history and subsequent posts with much interest. Like me you have had bad times and good times and when things are going well it is easier to be accepting of the affliction of RLS. I certainly have found that one's attitude to the situation is very important. Having been tried on all types of medication in the past including gabapentin I have not been able to tolerate any of them because of drug sensitivity. My only option has been opioids. I took codeine for many years and this helped me to get some sleep but became ineffective. At present I am trying Longtec (oxycodone) as per advice from the good Dr. B. It is not working too well but I am hopeful that continuing to tweak timings and dosage I will eventually get some help. I have severe RLS which occurs every day for hours and also affects my arms. For 18 months I have had sciatica down both legs - eventually so severe that I could hardly walk. However, I always felt it would improve so I kept trying to move. I got a spinal injection which was useless but two months ago the pain started to ease and has gone from 24/7 down to some bad days but mostly I can get around quite well. During that time I did not take any pain killers as I was already taking codeine 60 mg. at night and did not want to increase this. I cannot take other pain relief because of macular degeneration in both eyes. I agree with you about not fighting the pain and this is what got me through. I am accepting of the RLS and only get really frantic now and again! I am hopeful that the oxycodone will work and always tell myself that there are many others in a worse state. I have found this site great as it makes you feel you are not alone in your suffering and during wakeful nights I often think of you all on the site and wonder if you are getting rest.

I have no advice really but felt I would like to respond to your post as you really try to help others. Good wishes.

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Thank you for your thoughts Jelbea and I hope the oxycodone does work for you. It helps us to accept pain if it cannot be changed, but if it can be changed that is so much better.

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I know of many people who were put on Methadone and have had great success for years. It helps you sleep and takes away RLS. Don't believe the old myth that if you take Methadone you will get addicted. NOT TRUE. The doctors monitor your amount and usually you only take it before bed. The problem is finding a doctor to give it to you. Not sure where you are located but CA has some up to date doctors who are great to work with. The RLS society can give you some names. Best of luck to you hope you find a solution.

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Thanks btthemd. Like most folk on this site I live in the UK. I'm not entirely averse to using opiates for severe refractory RLS. I'm also entirely happy for others to use them if that's their choice or a necessity for them. For me, I don't think I've reached a point in my journey where the benefits of methadone would outweigh the costs.

I recognise that using opiates doesn't necessarily lead to addiction, but there are other risks associated with opiates which I'd rather avoid.

It's somewhat academic anyway. It is highly unlikely that any UK doctor is going to prescribe methadone for RLS, so it's not a choice I could make anyway.

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I am sorry that I can’t offer any help but am offering my sympathy and thanks for sharing with us details of your RLS experiences. I am a new boy, having only been in the RLS world for about 4years. Along the way I have had ups and downs and am at present on a cocktail that works for me. Lucky me! I do very much wish you well. Dr B, referred to above, says that with sufficient help and experimentation every RLS sufferer can have a good quality of life ( I think I am giving you the gist of what he said). We should all keep nagging away at our health care folks to get this quality of life. Having written this I realise that my cocktail probably needs tweaking but it does wear you down doesn’t it?

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Thanks for your sympathy Martino. I do hope you manage the best quality of life possible.

Quality of life or well being depends on many things, some with a negative influence and some with negative. I'm pleased to say that RLS is not the most significant factor in my well being for most of the time.

It might seem that way in what I write on this site, but then, it is an RLS site so you will only glimpses of other parts of my experience.

I don't generally write about my relationships, my finances, my spiritual views and experiences, my politics, role in society, and so on.

I respect and admire the expertise and humanity of exemplary people such as Dr B and do refer to his algorithms and have exchanged emails.

RLS is not however the main focus of my life. I imagibe, or hope, it is the same for you. But, yes, it does wear you down at tines.

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I am now seeing a sleep doctor and a psychiatrist at Jefferson Hospital in Philadelphia they have me on 2 —20 mg doses of lorazepam and 2 doses of 300 mg Gabapentin and a 600 mg dose of Gabapentin at bed time. Helps MOST of the time

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Hi Gugie, I'm glad to hear you're getting some help with your problems which sound a little more complicated than RLS.

Do check your medication though 2 x 20mg, i.e. 40mg of Lorazepam is a massive dose and I read that anything over 10mg a day can cause an overdose. I hope also that you've made yourself aware of the side effects of the drug.

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Glad you ve found romance & youre happy in that respect .I dont use any of the drugs my fellow suffers are using or know anything about them so not really sure how to react

Very good luck Manerva

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Thank you Sara. The question in my mind which was behind me starting this post has been more or less answered. I've had some very useful, kind, helpful and thoughtful responses.

Thank you all

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