Recklessly Restless

[Legs1970]

The constant day to day life destroying struggles that this insidious syndrome of restlessness has had on my legs and my life has taken its toll on my body and my mind completely destroying my quality of life and the chances of ever living a normal life.

[Hidden]

Hi Legs1970,, so sorry you are struggling . Can you please tell us what meds you are taking for your RLS, if you are taking any, what dose it is will help us too. Any other meds you might be taking either from your doctor like any anti-depressants, antihistamines. Or any OTC meds like cold meds or anything else. You will get help on here from the members once we know a little bit more about you and your meds.

[Legs1970 in reply to Hidden]

Ive been taking 1mg Sifrol (Pramipexole) for about 8-9 years, the script says take two tablets in morning and two and a half tablets at night. I have tried taking these tablets this way but found the only way they worked best was to take them only when the onset of my restless legs start.

Only other tablet I take which I started 6 months ago is Perindopril for high blood pressure.

[Parminter]

Hello Legs - We need more information, please.

When did it start, in what way is it so destructive, what do you take, how has it worsened, etcetar etcetera.

Many of us have felt as you do, and we know that things can be improved.

[Legs1970 in reply to Parminter]

RLS started for around 1990 when I was around 20 years old. I’m now 48 years old and RLS is stronger now than it’s ever been. Everyday I get it either morning, afternoon or at night. Most of the time it’s intense leg pulling and pushing action. Not as often as western city

[Parminter in reply to Legs1970]

Hello Legs - the highest dose of Pramipexole currently advised by the top experts is 0.25mg. The best time to take it is 2 or 3 hours before bed. (When I took it I took half a dose at six in the evening, and the other half two hours later).

But if you are taking 1.0mg X 2 or 4, then you are taking an absolutely HUGE dose, which is no doubt the reason for your terrible misery - you are augmenting. (Even if you mean 0.1mg X 2 or 4, it is obviously too much for you).

Augmentation means that the drug has hammered your dopamine system so hard that it has made the disease worse much faster than is normal. It has hurt the part of the brain where this all arises.

Familial RLS, which is clearly what you have, (and which many of us have), is genetic, and the progressive worsening is very slow - but Pramipexole speeds it up tremendously even at low doses - I myself augmented at the lowest dose, almost immediately.

The good news is that if you get off pramipexole and onto another drug your brain will slowly recover from the onslaught of the medication and you will get back to pre-Prami levels. It is not easy, but many people on this site have done it.

So you must do your homework about 'Pramipexole and Augmentation' - google it - and take the results to your doctor.

He/she can help you to wean off prami with the help of an opioid and get you onto gabapentin or pregabalin. Google these too, particularly 'opioids and RLS'.

You also need to have your ferritin levels checked - we have a glitch in the brain which means we unable to store iron in crucial parts of the brain - and thus the problems. Out ferritin levels should be 100 or more - but most doctors are happy if the level is 20.

If your ferritin levels are low you can get them up with an iron supplement - to a certain degree. Otherwise, like me, you may need IV iron infusions every couple of years. So google 'ferritin and RLS'.

Learn everything you can, read all the posts, spend your sleepless nights getting smart - you CAN recover from this, but you must accept that you need to know a lot, because your doctor doesn't, clearly - most of them are woefully ignorant, and we have to teach them.

I spent months of sleepless, suicidal nights getting really well-informed, then I took it all to my doctor and plonked it on his desk - he was actually very grateful because at last he knew enough to help me - and he did. I am now symptom-free, after being just like you for a very long time.

Let us know how you do, keep in touch.

PS - One of the smartest things I did was to join the RLS Foundation. It costs a little to become a member, but is worth every penny, and the pennies go to research. There is a lot of up-to-date information and regular online talks all by top experts.

The best defense against despair is knowledge - I know from personal experience.

[Legs1970 in reply to Parminter]

No my recently new GP has no idea, I have tried to explain my symptoms and struggles with RLS but he just looks and listens to me waffle on with this blank look on his face then says here’s a script for some sleeping tablets and sends me on my way. That’s the worst thing my doctor could give me. Theres nothing worse than taking a sleeping pill when your experiencing severe RLS when you want to go to bed, because you feel all sleepy and tied but the restless legs won’t let you go to sleep. You know how much that does your head in on any given night when you are tied and trying to get to sleep without any sleeping tablets.

[Parminter in reply to Legs1970]

Yup, RLS will break through any number of sleeping pills.

No doctor will listen unless you have backup - so no waffling, just print out a few scientific articles and put them in front of him. If he's offended by the science, just walk out.

What we have to go through! And much of the planet thinks we're just neurotic.

[Legs1970 in reply to Parminter]

I’m likely to end up walking out. If I do walk out what next look for another doctor??

[Parminter in reply to Legs1970]

Legs, spend some time online (in the middle of the night) collecting information. Print out appropriate papers and take them along.

Study them so that you can present your case clearly without waffling, and request politely that he/she read the documents.

Do not do it until you are on top of the subject.

I spent a few months doing this, until I was really well-informed, then I took two fat files of science to my doctor. He read them and acted accordingly.

It was a battle, but now I have had four IV Iron infusions (on the evidence), I have come off dopamine agonists (on the evidence) and I am now on an opioid (on the evidence).

My doctor is really pleased, not only because I am now much better than I was, but he can also help his other patients.

Win-win. Aim for that.

All this with my GP, no specialists.

As new information comes in, I take that to him.

[Legs1970 in reply to Parminter]

Yes I’ve done a lot of research and bookmarked information relevant to my situation. I have set out to arm myself with all the literature I need to put forth my case as clearly and to the point necessary.

[Joolsg in reply to Legs1970]

I second everything Parminter has advised. 1mg of Sifrol is 8 times the maximum dose & is way too high.

Augmentation is very real- it creeps up on you over the years & then you find yourself with unbearable RLS at all times of the day.

There is life after Augmentation and withdrawal. As Parminter says, many of us have come through it and found alternative meds that give us our lives back.

Read the pinned posts ( top right) and start reducing pramipexole slowly with the help of a strong painkiller.

Educate yourself because it’s likely your GP will not know how to help you reduce safely. Print off all the articles and hand them to your doctor.

Let us know how you get on.

[Legs1970 in reply to Joolsg]

No my recently new GP has no idea, I have tried to explain my symptoms and struggles with RLS but he just looks and listens to me waffle on with this blank look on his face then says here’s a script for some sleeping tablets and sends me on my way. That’s the worst thing my doctor could give me. Theres nothing worse than taking a sleeping pill when your experiencing severe RLS when you want to go to bed, because you feel all sleepy and tied but the restless legs won’t let you go to sleep. You know how much that does your head in on any given night when you are tied and trying to get to sleep without any sleeping tablets.

[TEAH35]

Couldn't have said it any better myself. Welcome to my world.

[Hidden]

The “ syndrome” is life changing

[Roseposie123]

I completely understand RLS controls the quality of your life it consumes you

[SLMCP]

Please don't give up....... I know its a horrendous battle, but try try and keep fighting it. God bless x