Help

[nugentme]

Can't cope with this RLS much longer. The not sleeping much is bad but the pains are horrendous and torment me to the point of thinking about doing something bad.

[Hidden]

I'm teally sorry to hear you're suffering so much. It does sound awful.

I'm very lucky, I've never had pain with my RLS. That's good because I don't cope with it very well. It can really wear you down.

Perhaps if you give some more detail then it may be possible to help.

E.g. how long have you had RLS do you take any medication for it?

Do you have any other symptoms as well, which you might not have noticed so much.

Let us know and I 'sure somebody will come up with some good ideas.

Please don't give up.

[nugentme in reply to Hidden]

Hi thanks for your concern. Started get it in my teens only when unable to move around for long periods like car trips slowly got worse into my twenties but only like above and at night went tired Continued getting worse to a point in my thirties were in started happening ever night and anytime I tried the relax. Now I have as above and it getting more intense Not just in one leg or two i can get it in my elbows even during the day and even when standing, especially if I'm tired. That's one of the maddening things the more tired I am the worse it gets, Which is most of the time as I don't sleep much. Last night it was really bad it was if the pains was surging though my whole body. Thats why I got online and found this site. Been on meds for it for around twenty years they help a little so I manage to get a little sleep (would get none without them) Which leads my to my other problem. The drugs have terrible side effects but I can't not take them.

[nugentme in reply to nugentme]

Pkease excuse the poor grammar . Didn't sleep last night.

[Hidden in reply to nugentme]

Lack of sleep always makes things worse, especially RLS.

As you say you've been on meds for 20 years, I have a very strong suspicion that it's the meds that are now causing your problem.

Have you been on the same for 20 years and what are they called?

[nugentme in reply to Hidden]

Neurologist put me on Permax to start with but it upset my stomach, Then Sifrol and still on that. Side effects have had a big impact on my life.

[Hidden in reply to nugentme]

AAAAArgh!

Sorry to say you are yet another victim of the complications of taking a dopamine agonist. In your case it's pramipexole (Sifrol), the worst of all!

What you describe is a classic case of "augmentation".

The key characteristics of augmentation are

- symptoms get more intense

- they spread from the legs to other parts of the body

- they happen earlier ib the day

- they start to occur more quickly when you try to relax.

I also note before the pramipexole you were taking another diffrent kind of dopamine agonist, pergolide (Permax) which is now little used.

I am amazed that you've survived taking dopamine agonists apparently for 20 years.

I'm scared to ask - what dose of pramipexole are you taking?

[nugentme in reply to Hidden]

2mg

[Hidden in reply to nugentme]

That's terrible, but as I suspected. If that is correct, somebody has prescribed you over twice the maximum dose for RLS, i.e. 0.75mg

Unfortunately, it's only my opinion but whoever prescribed you that should be sued for negligence.

It's probably best, though to let that go.

Sorry for the following lengthy explanation, but it may help you to know.

It has been known since the 1990's that the use of dopamine agonists (DAs) have a high risk of leading to severe complications. These are augmentation, loss of efficacy. and Impulse Control Disorder. I can see you're suffering the first 2.

The three DAs c urrently commonly used for RLS are pramipexole, ropinirole and rotigotine. They all cause augmentation, but pramipexole is the worst and rotigotine is the least.

The longer anybody takes a DA the higher the risk. The higher the dose, the higher the risk. Typically most people taking pramipexole have augmentation after about 8 years. Switching from one DA to another e.g. from pergolide to pramipexole does not prevent augmentation.

It's now fairly well accepted that the dose of pramipexole for RLS should be kept at an absolute minimum abd some say it should never be raised to more than 0.25mg, i.e. 1/8 of what you're taking.

Augmentation is when a DA, instead of relieving RLS symptoms, it starts to make them worse. There is an explanation for this, but it's a bit technical.

When this happens, doctors typically raise the dose, which seems logical, but actually it makes symptoms even worse..

The other problem with DAs is, they are highly dependency producing. This is not an "addiction" as such, but only because they don't give you a high. However after years of taking these drugs you can't manage without them.

You may have experienced accidentally missing a dose or taking it late and suffered as a consequence!

This puts you in a terrible dilemma, which is very common.

There is a way of resolving your augmentation, but I'm afraid it's hard.

The only really certain way of improving your situation and getting symptoms under control is to reduce and probably eventually stop taking pramipexole altogether.

You must not attempt to stop taking a DA completely suddenly. It's potentially fatal.

What happens when you reduce the dose of a DA is that you get withdrawal effects. These usually take the form of worse RLS symptoms. This is why people find it so hard, they reduce the dose, symptoms get worse, so they put the dose up again.

However, except in rarer cases, is after a while, these withdrawal effects fade. In addition, as the dose gets lower, with further reductions, the augmentation starts to get better.

There is research that showed the slower the dose of the DA is reduced, the less the experience of withdrawal effects is.

There is another thing. You may not be aware, but DAs are no longer the only drugs used for RLS. More recently alternative "alpha 2 delta ligands" are used for RLS.

One of these can be taken at the same time as a DA. They can help reduce symptoms overall, but won't be as effective as they can be whilst augmenting or withdrawing. However as the dose of the DA is reduced, their effect becomes more noticeable. Once you have stopped the DA entirely, you can carry on taking the alternative.

In addition, an opiate can reduce withdrawal effects.

What I'd suggest as a solution to your current problem is that you ask your doctor, it doesn't have to be a neurologist, to prescribe either gabapentin or pregabalin. Start taking that and then start reducing the pramipexole. You can increase the other as you reduce the DA.

Slowly.

At the dose you're currently taking, sorry to say, this is going to take you over a year.

You will have to explainnto your doctor why you wsnt to stsrt gabapentin or pregabalin and reduce the pramipexole. I imagine when you mention augmentation, I'd be very surprised if they know what you're talking about. Your neurologist..has apparently never heard of it.

I'll let you digest this. Then give you some !ore information.about how tonreduce pramipexole and gabapentin/pregabalin doses.

I'll also try to put you in touch with anothet member from Australia, called Shumbah.

So you know. - I took pramipexole 0.75mg. After about 6 years, I started with augmentation. I suffered with worsening symptoms.for nearly 3 years, but had never heard of augmentstion. I had involuntary movements in my legs, arms, shoulders and abdomen any time of day and within seconds of staying still. I skept 2 - 3 hours a day

After joining this forum I was already taking gabapentin for nerve pain, so I started reducing the pramipexole. It took me ten months to stop it altogether. As I reduced the dose symptoms decreased overall and I started sleeping better. I now take gabapentin only and rarely have any RLS symptoms.

[Hidden in reply to nugentme]

The good news is, I believe I know how to solve your problem

[Hidden in reply to nugentme]

For the time being read the article from this link, then I will give an explanation later.

sleepreviewmag.com/uncatego...

[nugentme in reply to Hidden]

Thank you so much,You have given me hope. I'm am making a appointment with my neurologist today. Should of done this long ago but thought there was no other way than the meds im on. You may have saved a life, You are a wonderful person.

[Hidden in reply to nugentme]

Be warned!

Your neurologist may have never heard of augmentstion or using slternstives to pramipecole. I suggest you get more information befire you see them.

[RLSdaily in reply to Hidden]

I went thru the same, augmenting then seeing doc and increased my DA dose , I felt crazy, I found this group and yes saved me for sure. Did the withdrawal ( so horrible) Now I can say I am sleeping with some RLS daytime and evening. Taking 400 mg of Gabapentin an hour before bed and I feel normal again. I do believe I have added weight and some lower back pain as side effects but worth it for the sleep.

[Lapsedrunner in reply to nugentme]

Wishing you all the best, lots of us have been where you are to a greater or lesser degree . Use this forum whenever you need to over the coming months. Life will certainly get better 😊

[Joolsg]

Hi nugentme

You’re about to change your life.

Manerva has given you excellent advice- he’s a treasure!

Every day we get at least one person suffering exactly as you are and, luckily, you have come here for advice rather than to a GP or neurologist who would not have the wealth of knowledge about RLS, dopamine agonists and the increasingly common life threatening side effect of Augmentation.

Just recently, someone posted their concern about members describing GPs and neurologists as useless- your post just proves, yet again, that most are useless when it comes to RLS.

Many of us have been negligently treated and have got off dopamine agonists like Permax and Sifrol with the help of this site and you should follow Manerva’s advice and do the same.

After getting off these awful drugs you will find your daytime RLS disappears and it will be much milder.

Withdraw as slowly as you can, minimum 3 months- up to a year. You will probably need an Opioid like Oxycontin or Tramadol to deal with the withdrawal ( it can cause increased RLS and total lack of sleep for days). Hopefully you will find a more knowledgeable GP or neurologist who can help prescribe the necessary meds to get you through withdrawal and prescribe the right alternative meds like pregabalin or low dose opioids.

Keep us updated.

[nugentme in reply to Joolsg]

Thanks

[Jumpey in reply to nugentme]

Huge good luck.You can do this.

There is light at the end of the tunnel.

Sending love.x

[nugentme in reply to Jumpey]

Thank you

[Hidden in reply to nugentme]

Although it's not entirely up to date as regards the latest information, this article was published in 2019 by a RLS specialist : Professor of Neurology.

It discusses options for treatimg augmentation and it gives dosages for gabapentin or pregabalin. It also discusses the use of opioids for refractory RLS.

uptodate.com/contents/treat...

Hopefully, if you do see a neurologist they will accept the authority of this article. If this is the same neurologist that prescribed 2mg of pramipexole that might be a problem. In which case, it would be best to see someone else.

I have to say, it might be understandable that a particular doctor may not be familiar with what's the best way of treating RLS is, nor all the consequences of taking a particular medicine, but it is not acceptable that any doctor should prescribe more of a drug for a condition that the accepted prescribing guidance identifies. In the UK, this is the BNF (British National Formulary). In Australia, I believe it is the APF (Australian Pharmaceutical Formulary).

I'm afraid I can't access the APF. The BNF states in relation to the use of pramipexole for RLS -

"Initially 88 micrograms once daily, dose to be taken 2–3 hours before bedtime, dose to be increased by doubling dose every 4–7 days if necessary, repeat dose titration if restarting treatment after an interval of more than a few days; maximum 540 micrograms per day."

(NOTE : 88ug is the same as 0.125mg, so 540ug =0.75mg))

I wouldn't bother challenging this neurologist about their error, but I would be very wary of them and would double check anything they say.

Also be aware that some doctors try to switch people from taking one DA to taking another.

Also be aware that somwe doctors tell people they can stop taking a DA suddenly or in any event much too fast.

In respect of this, here's another link you may find helpful. I also think Jools has some more up to date inflormation.

ncbi.nlm.nih.gov/pmc/articl...

[RLSdaily in reply to nugentme]

You can do this, so worth it. Arm yourself with information, love this group.

[rls-insomniac]

Hi nugentme, you can do it! So many of us have. I'm 2 months DA free and things are much better! My body is still going through a period of adjustment due to the very high DA dosage I was taking, but my symptoms are improving all the time! There is life after DA's. You may have to play around with different meds to get the relief you need, or you might be lucky enough not to need them!

Just keep thinking... "it will get better, this is only a temporary blip"

I wish to you well in your journey.

[Merny5]

So sorry nugentme. You have stumbled upon an excellent site. Good luck and keep us posted.

[hudson48]

I know how you feel it drives me mad I could scream cry but pointless I live alone. I walk floors but I get it in my arms too now

[Hidden in reply to hudson48]

If you're also taking a dopamine agonist, pramipexole, ropinirole or rotigotine, like nugentme, then you may be suffering augmentation.

Symptoms spreading to the arms is a sign of augmentation.

If that's the case, then what's being suggested to nugentme also applies to you.

[Sara_2611]

sorry to hea youre suffering - have you seen your GP about this to see what he rcommends -or gone to a chemist to see what they recommend

Please dont do anything bad we re all here for everyone

[suesweda]

Since this is an international forum, I don't know where you are located, but if you are thinking about harming yourself, you need to get help now!! Severe pain is not a typical symptom of RLS, so you need you find out what is causing it. I would go to the ER, but again I don't know what options are available to you. I have had severe chronic pain for many years. It saps all your energy and destroys all the joy in life. I feel for you and hope you have access to the resources you need.

[Rangers9]

I know exactly how you feel my friend I have spent a lot of nights without sleep & in excruciating pain i have been too the stage of taking a hammer 🔨 to my own feet ppl who don’t suffer don’t understand the pain involved & make comments like oh you have jumpy legs how i wish it was just that stay safe

Allan Rangers 9