Hi all. I was diagnosed 11 years ago with rls. I get it in my legs from about 4pm.
Sometimes it's been so so bad it's in my cheeks and arms. I feel like I've had symptoms since a kid tbh.
I saw a new neurologist yesterday and she said that it doesn't sound like rls as you don't get it as a kid and also that I've had it in my cheeks that's simply not possible.
I've been on pr4mip3ole for 11 years and totally augmenting.
She said that it could ne a sensory and behavural disorder and forwarded me onto a movement neurologist
Now for me the overwhelming urge to move my legs is awful. Sometimes I have to have hot baths to calm them. I punch them or slam them in the floor and if I walk it's OK until I stop.
Has anyone else been told this as I am scared they will say just completely come off meds and go to a counsellor (I am a counsellor) and I am certain it's not behaviour and I don't have control over the feeling.
I would quite like to chop my legs off tbh.
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mrsq2009
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Children can and do present with RLS: it's just more common with age. And augmentation, which you recognise, can involve symptoms earlier in the day and spreading throughout the body.
Unfortunately UK doctors and neurologists are not trained in RLS and follow outdated guidance from NICE/NHS - although even NICE and some parts of the NHS now recognise that dopamine agonists cause augmentation: I suggest that you read this following NICE link and refer your neurologist to it (print it out if necessary):
People who have been through this - such as Joolsg and SueJohnson - can advise you on coming off pramipexole and alternative medications, and on getting a full panel iron test.
Totally terrible, the behaviour of the neurologist, I mean . And also your symptoms. They sounds very much like RLS. And we know.
You seem to already know a bit about rls treatment, as you are aware o f augmentation. Are you also familiar with the updated treatment guidelines as published in the Mayo Clinic Proceedings in 2021? mayoclinicproceedings.org/a...
Don’t reduce of stop without a thorough plan. As per the guidelines, a full iron panel and review of your medicines (if you take any other than the prami) for their potential to worsen rls are the first things to do. You could turn to your gp for that, if s/he is willing to listen and inform her/himself.
Apart from the guidelines, spend some time reading through posts and replies, you’ll learn an awful lot. You have come to a good place for help and support. Keep us posted and never hesitate to ask more or specific questions.
Addition: look st rls-uk.org for info. Also, Kaarina (moderator) and Joolsg (board member of rls-uk) can recommend good neurologists, sleep specialist or movement specialists in your area - if you let them know where you are based in the UK.
All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. If you meet these you have RLS and yes children can get it - they are usually told it is just growing pains but of course it is not.
You are suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. This means you need to come off the ropinirole.
First off check if you are on the slow release pramipexole The slow release ones usually have ER after their name or are labeled slow release. If so you need to switch to the regular ones. The slow release ones are the equivalent of taking the labeled amount twice a day so you will need to take twice the labeled amount a day to equal the slow release ones. You can't cut the slow release ones.
Pramipexole (and Ropinirole) are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. You need to get .088 mg tablets if you don't already have them. Then to come off pramipexole, reduce by half of a .088 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice. Improving your ferritin will help your augmentation.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Not a huge fan of gabapentin either. Dose over 900mg makes my husband noticeably forgetful and tired. Takes 2mg Neupro patch slowly cutting dose. His RLS is related to PD. Have read it can be very difficult to stop gabapentin too. Awful disorder.
I'm sorry he has both RLS and Parkinson's. That certainly makes things much harder. I hope he has a good doctor.
Yes tiredness is a common side effect with gabapentin although forgetfulness luckily is not.
By the way it is not difficult to stop gabapentin. One just needs to do it slowly like 100 - 200 mg every 2 weeks. If done that way there are no withdrawal effects.
I do despair at the total ignorance of most UK neurologists.RLS can present in babies and children.
Ropinirole feeds the disease and causes it to worsen. It spreads to other body parts, including hands, arms, shoulders, trunk, back, genitals AND face.
I had severe RLS in my face on that poison.
So, sack the neurologist. Please also name her so everyone else can avoid her. She's given you negligent advice!
If she failed to discuss and arrange iron therapy and didn't warn you of the dangers of drug induced worsening (augmentation) and Impulse Control Disorder ( spending, gambling, overeating, hypersexuality) she is in breach of duty and you can sue her.
Find one that knows the basics.
In the meantime, see your GP to arrange full iron panel blood tests. Morning, fasting.
Show your GP the evidence as set out in NICE guidance about augmentation. You have SEVERE augmentation and have to get off Pramipexole. NICE guidance states you need to switch to pregabalin or gabapentin. If your neurologist isn't aware of this, she is SO behind on UK practice! And the UK is about a decade behind best world practice as set out in the Mayo Clinic Algorithm.
Reduce by half a 0.088 pill every 2 weeks. Your RLS will flare up at each reduction. Ask GP for a low dose opioid, like tramadol or codeine or oxycodone to settle the withdrawals.
Start pregabalin around 4 weeks before your last dose of Pramipexole. Raise serum ferritin above 100ųg/L by pills or iron infusions.
Sigh.
Every day we get at least 2 people suffering what you are experiencing and their doctors know sweet FA.
Please also consider reporting her to the GMC and ABN. She's not even following the outdated UK best practice!
Co codamol has codeine and paracetamol included. Codeine phosphate is just plain codeine.I am so sorry you have come across such a poorly informed neurologist. Sadly, it's very common.
The more you learn, the better you will be treated. There are only a handful of UK doctors who know about RLS and the dangers of dopamine agonists. It is a growing medical scandal as more and more patients begin to experience drug induced worsening.
Dopamine agonists are dangerous and one day WILL be banned.
In the meantime, you are not alone.
Most people on here have experienced augmentation and brutal withdrawal from these drugs.
Stay strong. Get your GP on side.
Where are you in the UK? We can direct you to a doctor who understands about augmentation and the benefits of iron infusions.
You would be better seeing a neurologist in London.The MS team at St George's and Bart's are aware of the dangers of dopamine agonists and will no longer prescribe them.
NHS Waiting lists are long. Around 12 months according to the Neurological Alliance.
Good private doctors can be seen in Around one or two months.
Professor Matthew Walker at UCL Queen Sq will help you off Pramipexole and will arrange iron infusions if necessary.
He is definitely one of the more knowledgeable neurologists. He recognises augmentation and will arrange iron infusions if needed.He has mentioned that he believes Ropinirole is safe up to 2mg, which is absolutely incorrect, but, hopefully as he sees more RLS patients he will realise how widespread augmentation really is, and at very low doses.
He will prescribe opioids as well, if necessary.
And he's a nice man who actually listens to patients.
And please report severe augmentation as a side effect via Yellow Card Scheme. Doctors will keep prescribing dopamine agonists until the full scale of severe side effects is realised. Unless we ALL report augmentation, the negligence will continue.bnf.nice.org.uk/medicines-g...
I'm so sorry to hear about your dismissive doctor. I had rls as a child around age 7 or 8, though it was infrequent then. It absolutely does occur in children.
I'm in the US, but suffered needlessly until I found a doctor who understood the proper treatment for RLS. In my opinion, there is NOTHING more important than identifying and placing yourself under the care of a physician who is knowledgeable in RLS care. My RLS specialist is 900 kilometers round trip from me, but I no longer suffer from RLS symptoms.
It's so interesting you all talk about opioids as I said to my neuro that I had the morphine patch (due to fibro) and it stopped rhe rls completely and again she scoffed at me.
This person is totally ignorant, I have a good GP who prescribes Targinact ( an opiod) it helps tremendously. An earlier GP prescribed pramipexole which she should never had done.
I take 10/5 Targin at 9pm, 75mg Pregabalin at 8.30 and another 75mg when I go to bed at about 11pm.Unfortunately my RLS symptoms often return from about 5am and prevent me from going back to sleep.As a result I feel exhausted all day and cannot even nap(symptoms return as soon as I try to relax!)to restore my energy .I am particularly bad when I sit down after dinner(my body is screaming for that next dose of Targin!)
My specialist is against me taking another Targin in the morning.
I am still slowly withdrawing from pramipexole but am only taking 5\2.5 Targinact at 6pm and that settles me until early morning. Have not needed to increase the dose. Still have some bad nights.
I used to have morphine patches but they burnt my skin after a while and I told my neuro these worked and she said that's the most ridiculous thing she's heard and makes her even more sure that I haven't got rls
I had restless legs as an (older) child, so perfectly possible. Mine has always been when tired and, say, on car journeys when I am more still in one place, or in bed if overtired. I hardly get rls now, don't know if that is because I am now treated for B12 deficiency, plus I do own jabs and also treated for hypothyroidism, it may have helped, but I still don't like travelling at night when tired as could set it off, but not every time. If I do have it in bed,it helps me to put my legs on a cold part of the bed.I hope you get some more help.
Hi there, we're with you, I've been in your situation for many years and tried everything until suicidal I was referred to Mr José Thomas Gwent, who Px Methadone. It's transformed my life and allowed me to sleep 3-4 hrs from 1-2 hrs Please contact him asap. No-one who hasn't had this condition can possibly understand how bad and disabled it is for us. Bless you. X
I developed rls since I was off abilify end of 2022, nothing worked , I tried diagnostic machines, compression, bath at night, different meds., only pramipexole. I started promipexole 0.125 until now.i donot like this med, I have no choice.
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