Severe rls

[Alyson66]

Have just been through a period when I ran out of my opioid medication,the rls was so severe I couldn't be still,sit or sleep for over 3 days until I got some more medication,now even though I have my medication,150mg of oxycontine daily I can still feel mild rls and am terrified! what if the only respite I have is stopping working...I cannot carry on like this, addicted to opioids, severe rls and fibromyalgia,I feel like there is no hope and no help,I went to a&e this weekend but they refused to help me,the rls is so bad I've open sores on my elbows and knees due to friction of moving around in bed so much,I am suicidal,I no longer know what else I can do, please help me

[Joolsg]

Oh Alison- please get an emergency appointment with your GP to tell them how you feel and get the practice nurse to look at your sores and dress them.

If you have been off your OxyContin for 3 weeks you will have gone straight into withdrawal and RLS is a symptom of opioid withdrawal.

As you are now back on them the symptoms WILL settle and you should actually improve because having a break from the opioids ( even though you didn’t mean to) will have reset your opioid receptors and the opioids will work better.

Stress and worrying about the RLS can make it a little worse so try to do something for yourself to take your mind off it - get a friend over or family.

It will settle- the bad few weeks was your body suffering withdrawal.

Please do get to your GP or call the samaritans if you feel you may do something.

You are not alone-

[Alyson66 in reply to Joolsg]

I've had it all my life,am now 53 and it's just getting worse,I can't even walk properly as the spasms in my legs are so intense, moving doesn't even evlate the symptoms anymore,there is no break and goes on days and day...

[Joolsg in reply to Alyson66]

Definitely see your GP and ask for an emergency referral to a neurologist who knows at least the basics about RLS. If you’re near Newcastle, Dr Kirsty Andersen is good. If near London, I hear good things about Dr Guy Leschziner at Guys Hospital.

If the RLS doesn’t settle in a few days, you may need to add another med at low dose.

Check you’re not taking any anti histamines or anti depressants which may be making it even worse.

[Madlegs1 in reply to Joolsg]

@jools -3 DAYS, not weeks.

But 150 mg Oxycontin is crazy high.

Is there something wrong with this site concerning dose amounts?

One person on 20 mg of a DA, now someone on 150 mg of Oxy.

Maybe Pharma is softening us up for megadose treatment.?😎😂

[Joolsg in reply to Madlegs1]

Oops yep misread that one & assumed the high dose of OxyContin was either an error or for the fibromyalgia.

[Alyson66 in reply to Joolsg]

No it's not an error

[Joolsg in reply to Alyson66]

Presume the high dose is to control the fibromyalgia? If you stopped 150mg of such a high dose that would explain the severe RLS for 3 days.

When you see your GP, I would chat about lowering the dose of OxyContin if possible. I understand it’s difficult to control fibromyalgia but as you’ve recently been off the OxyContin for 3 days, the receptors in your brain may adapt to a slightly lower dose .

I hope you manage to sleep tonight without too much RLS.

Take care

Jools

[Alyson66 in reply to Madlegs1]

I wish they would actually take it seriously..

[Joolsg in reply to Alyson66]

I know. I was in St George’s hospital on Tuesday as a neurology guinea pig for medical students ( I have Multiple sclerosis as well). I am always shocked that they have never heard of RLS & think it’s fidgety legs!

No wonder doctors haven’t got a bloody clue.

How are your legs? Is it settling at all?

[LotteM]

I feel for you. This sounds bad!

Jools has given you excellent advice. Please don’t hesitate and follow it up asap.

[Sharbar05]

I have severe RLS

I too even on Ropinirole (have you tried this drug? Works to take edge off)

Have only 3 hours sleep day

So unfortunately the drs have no clue how to treat RLS

The pain clinic have no clue

We are dumped on the scrap heap

I can only synthesise with you

And to be honest there no cure

I was at the point of giving up

You say you never slept 3 nights

I never slept for over year

I was at that point of being so poorly

Went to the dr told her I’m thinking on Euthanasia I’m tired I’m run into the ground

No help

No sleep

Brain hurts

Life is limited

Help me

She said

Sorry you feel this way

You won’t get a tablet from me

I looked at her with disgust

Never been back to her

Drs are baffled

Consultants say

Walks

Exercise

Hobbies

Do our door things

Fit bit

Huh

It doesn’t work

Try Ropinirole it’s a Parkinson Treatment

X

[Joolsg in reply to Sharbar05]

Hi Sharbar

Most of us know all about Ropinirole.

It worked brilliantly for us for years and then made us worse.

How many years have you been taking it and what dose are you on?

Please read the pinned post about Augmentation- your lack of sleep is possibly because you have Augmentation and may need to get off Ropinirole and start taking alternative meds.

rls-uk.org/augmentation-reb...

rls.org/file/what-is-augmen...

[Debsamuels]

Hi Alyson.

My rls has worsened recently. Last week I had a flu virus and strangely enough no rls. that's not the answer I know. at least I could rest up a bit. Have you considered cognitive behavioural therapy, its a long shot but worth a try. not sure whether you can find it on the nhs. you can get in privately. RLS is a psychological nightmare and with everything else going on very difficult for you. Sometimes I feel not enough understanding is there for this condition and its effects. I find this forum helps. I am just having the transition from ropinirole to gabapentin but its not going smoothly. I work as a community nurse so I am aware of the issues of medication. I may have to give up work as more often than not I am exhausted.

[Wonko_TheSane in reply to Debsamuels]

This "I had a flu and strangely my RLS was gone" is, in my not entirely humble opinion, THE one topic that I wish RLS research would focus on. I have the same thing, and I've read it here many times. If our bodies can 'switch off' RLS when we have the flu, there's something going on that we should be able to use to switch this terrible condition off at other times as well!!

[Debsamuels in reply to Wonko_TheSane]

I thought it was just me and really interested to see how a virus can alter the severe RLS. I would be interested to see if any research has been done on this

[involuntarydancer in reply to Debsamuels]

I definitely find this also. Intense stress resulting in significant adrenaline (as in major life events - more than the usual pressures and difficulties) also turns off my rls. Don’t know what to make of it.

[Wonko_TheSane in reply to involuntarydancer]

I wonder if we could somehow combine our voices and get one of the bigger organizations behind the idea of this needing to be researched? Maybe RLS-UK has some connections to researchers or even some budget to motivate someone to at least conduct a preliminary study on the topic?

[Hidden in reply to Wonko_TheSane]

Please and aim it right back at the Drs who call it fidgety legs, or I was told just lay still it will go off. Yeah right.

[involuntarydancer]

Hi Alyson,

I think Joolsg may be correct and your current very severe symptoms are due to withdrawals from oxycontin. I recall that your symptoms - even when not exacerbated by additional issues - are particularly pronounced so anything that makes it worse is going to be doubly bad for you.

More than many other sufferers, I would have thought that your condition requires treatment with methadone - considered by experts as typically the most effective opioid for rls. It is very difficult to access methadone in the UK but that is not a reason not to make the most spirited attempt to get it. In the most recent edition of 'Nightwalkers', the magazine produced by the US rls organisation, there is an article on methadone. In your shoes I would join the organisation (rls.org) and get a copy of the magazine. I would also communicate with Dr. Buchfuhrer in the US and ask him for his views on methadone in your case (I would expect he would think it advisable), print this. Purchase the medical textbook 'Clinical Management of Restless Legs Syndrome' by Buchfuhrer, Henning, Allen etc from amazon which also mentions treatment using methadone. Amass any other compelling evidence you can lay your hands on regarding methadone to treat rls.

Take all to your GP, tell him/her that you are on the point of committing to ending your life given the severity of your illness. Insist (refuse to leave the surgery) on a referral to a heroin withdrawal clinic or other organisation that has the power to prescribe methadone - why on earth should heroin users be able to access this drug and not you - someone with a severe medical need? Given the level of your despair (which is 100% understandable), you have nothing to lose.

I read an account by one sufferer (in the US) who had a tiny pump implanted to enable him to introduce microdoses of methadone to his spinal column who got 100% relief from his severe rls using this method. There are always options. Unfortunately for us they are difficult - often very difficult - to access but that is our challenge and it is a more attractive option than quietly bowing out. Every minor success brings all sufferers a bit further down the road to accessing proper knowledgeable treatment. You clearly have enormous resilience - I am sure you will get through this. You are a relatively young person with a lot of life left - you should not let the ignorance of the medical establishment deprive you of the prospect of enjoying it.

[involuntarydancer in reply to involuntarydancer]

Alyson, I posted my above reply without reading through it and now realise it sounds quite dictatorial. I make my suggestions purely as an option for you to consider - I did not mean to sound harrying. I am not medically qualified and obviously cannot make medical recommendations. I am prompted purely by the knowledge of how awful it is to suffer with severe unrelenting rls and a sense of outrage that we are so easily dismissed by the medical profession. Whatever you decide to do I hope you manage to achieve some relief. Thinking of you and hoping for the best ...

[Alyson66 in reply to involuntarydancer]

No not at all, certainly didn't take it that way,your response is most welcome and I'm going to print it off and show it to Dr,pain clinic and anyone who will listen.i have tried for a year to access help and support from drug recovery centers but apparently I don't fit the criteria as I'm not a recreational drug user...wtf!!!I went to hospital this weekend,they wouldn't help me,saw a dr,he wouldn't help me,it makes me want to scream,they set you off down this path and then abandon you xxx

[Alyson66 in reply to Alyson66]

Have also tried to get LDN but neither doctors or drug centres will let me try it!!!why? What more harm can it do x

[involuntarydancer in reply to Alyson66]

That’s ridiculous. Ldn seems to be relatively benign. If it’s any consolation I took it for a good while (nearly a year) and didn’t find any positive impact on my rls though it did make me feel more energetic and ‘well’/‘myself’ during the day.

Can’t for the life of me see why they wouldn’t let you try it.

[involuntarydancer in reply to Alyson66]

The frustration is almost enough to drive one to lie and say one has been abusing heroin for years!

[TheDoDahMan in reply to involuntarydancer]

Hi, involuntarydancer,

As a person whose life has been completely turned around for the better by Dr. B's willingness to prescribe low-dose (5 mg x twice daily) methadone for refractory RLS, I commend your mention of this opioid as perhaps the most effective palliative for our condition known to medical science. Certainly it is not the answer for ALL sufferers, but I am SO sorry that more medical boards in more countries haven't recognized that their intransigence in not being willing to use this as a first-line remedy, is causing such pain: mental, emotional, and physical.

[involuntarydancer in reply to TheDoDahMan]

It is a crying shame that the role of methadone in the treatment of rls is not more widely recognised on this side of the pond - there are enough sufferers of this diminishing condition to justify it's use at least in extreme cases. I suspect that methadone is particularly tarnished by virtue of its association with the treatment of heroin addiction without any thought being given to the fact that it is used to treat such addictions precisely because it has been found in studies to be a less addictive form of opioid than others. Completely irrational.

[foren6chick]

i have never had to take Oxy but was on ropinerol for years till i had augmentation from it. SO MISERABLE and with all the same symptoms that a lot of you have described. the 'short version' of this story is that i started taking Kratom (a PLANT based supplement) and immediately experienced the only relief i've had for so so long. i found kratom information here and if you search "kratom for RLS" on this site, you'll find a wealth of information/reviews. i wish you the best of luck in finding relief. i truly do sympathize.....

[Vichic]

Oh god darling, I know how you feel. I don’t think many of us have been on this massive dose of Opiates, but we have seen & felt how well they work.after 5 years of good management I’m now getting Augmentation even with these drugs. I’m terrified, I don’t know what I’m I’m gonna do. My Drs are now adding even more types of drugs...all with their own side effects, I just feel like I’m doomed, I’ll nevver gat to know what a normal life is. I can’t really offer you anything but Empathy & hope it helps to know that you are not alone. Wishing you the very very best. V

[Alyson66 in reply to Vichic]

Bless you,it's terrifying isn't it,I mean where do we go from here?don't mean to sound unsympathetic but the people who say they refuse to take this that an the other can't have full body rls for days at a time,a noose looks appealing x

[involuntarydancer in reply to Alyson66]

This is exactly how I feel. It is so important to have some hope. I take a note of the various medical options that people report as being helpful to them and keep it with me to consult when I’m feeling particularly low. For me it’s important to feel that there are additional options. Here are some of the things I have yet to try:

IV iron;

Lidocaine injected rectally each evening - one poster reported this afforded total relief for her husband;

Mirabegron (a bladder control drug) - a couple of people have observed this afforded complete relief though they discontinued it ultimately due to side effects;

An opioid pump to insert tiny doses directly to the spine (one poster on the US forum with severe rls said his life was transformed by this);

Ecopipem - the US rls foundation is providing financial support for a study looking at ways in which this drug might block d/a induced augmentation;

Generally the work by Dr. Ferré investigating the adenosine connection;

High doses of naltrexone to block augmentation;

Methadone.

There are a couple more but I can’t lay my hands on my list just now.

Before I resort to the noose, I am determined that I will exhaust all these options and I will chain myself to the GP railings to get them rather than being pushed into oblivion by the horror of uncontrolled rls.

[Wonko_TheSane in reply to involuntarydancer]

Thank you for this invaluable list of ootiijs. I know I will need them eventually as I've already exhausted the knowledge of the medical personnel that treated me. For now i just hope intensely that something might come from the adenosine research before I build too much tolerance to kratom, which for now is my last resort. I can already get a glimpse of what full body RLS could be like on the days where I take kratom a little too late, and I know I will need options like your lists to not choose the final option eventually.

Maybe we could try to set up a curated list of remedies and the associated evidence in a shared Google Doc that's easy to access?

[involuntarydancer in reply to Wonko_TheSane]

That sounds like a great idea but I am a Luddite (and also very lazy) and have no idea how to go about it.