Hi. I'm about at the end of what I can cope with. RLS is seriously affecting my life. I feel like my GP just doesn't get it, and I don't know enough about RLS to know what to ask for.I'm 42 now, I first experienced RLS at 16, whilst in hospital being treated for meningitis.
Had very occasional RLS from then until 23, whilst pregnant with my daughter. It was constant. I also had severe hyperemesis. It was a long, difficult 9 months.
RLS settled after the birth, I had it maybe once or twice a month after.
It returned when I fell pregnant with my son, I was 31.
Horrific RLS, the whole pregnancy.
It never left
After 2.5 years of RLS every night, I went to the GP.
0.088mg of pramipexiole, 1 a night, before bed, was prescribed. It worked for a year or so. Then I'd wake middle of the night, as it had worn off. Take a second tablet, walk around for an hour until tablet kicked in.
Then it was started during the day too.
By 7 years on Pramipexiole, I believe augmentation had set in.
It's in my calves, my thighs, my arms, my neck.
It is all day. All day.
The maximum time I can stay inactive, before it starts, is 1.5 hrs. Usually less.
Unless I'm medicated.
It got to the point of taking 0.088mg 4 times in 24 hours. I still had RLS, but slightly dulled.
6 months ago I called the GP for help. He said "what do you want me to do?" I said I don't know. So he increased the Pramipexiole to 0.18mg, once a day, before bed.
I had to take one during the day too. I still had the RLS, but definitely less severe.
Last week I called again. GP has now put me on Pregabalin, 0.75mg, once a day, before bed.
Took the first one today at 5pm, as I couldn't wait any longer.
I've taken another at 9.45pm, as it was still really bad.
it's now midnight. The frustration tears are back, and I'm Googling whether I can take another tablet. Or can i take Pramipexiole with the Pregabalin.
I'm just not sure the Pregabalin is going to work (my eyes feel weird too, pretty sure that's the Pregabalin? They feel 'fuzzy'... unfocused?)
I'm full time carer to a poorly child, my husband passed away 7 years ago, so it's just me and my boy.
I do not have the physical, mental or emotional strength to continue with no sleep. If I manage 4 hours broken sleep, it's a good night.
I'm tired.
Where do I go?
Who do I see?
What do I ask for?
The thought of this continuing for another 20, 30 years...
I just can not live with this much longer.
Please, is there anything anyone can advise me?
Thank you, if you've read this far.
Written by
sleeplessforever
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Welcome to the forum. You will find lots of help, support and understanding here.
Pramipexole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It 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.
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 ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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.
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 pregabalin, beginning dose is usually 75 mg pregabalin. Normally you would 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 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. Most of the side effects of pregabalin 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 require200 to 300 mg of pregabalin."
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, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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.
Hi, thank you for replying. I've not had ferritin levels checked. I've had no bloods in a long time. I have 5 left of the 0.18mg Prami, i dont know if they are slow release or not.
There's non of the 0.088mg left.
The Pregabalin is making me feel very strange. Detached, fuzzy headed.
Doc said to take one 0.75mg in the morning- I can't! I took one today at about 6.30am, I still feel not quite right now, at 5.50... I wouldn't drive on them!
Yesterday, I kept busy (to keep symptoms away) until 7pm, took a 0.18 prami (had to drive half hour home, so was to scared to take the Pregabalin.) At 11pm I took the 0.75mg Pregabalin. Was awake by 3 or 4. Took another at 6.30am.
The night before, which I think is when I posted, I took one 0.75mg at about 6pm, as legs were mad, didn't work. Took another at 11, went to bed. Still really bad symptoms, but also then felt totally out of it.
At around 1.45am I took a 0.18 prami, and finally went to sleep. Woke about 7am with jumpy legs.
I'm really worried - all the post say about a gradual reduction of the Prami, but I don't know if gp will even reinstate the prescription.
I dont understand if I should be back on the 0.18mg, or the 0.088mg?
I cant keep taking Pregabalin is its going to keep making me feel like this. I'm solo carer to a poorly child. I HAVE to be totally with it, able to drive etc.
The idea of symptoms getting worse... I cant. I just cant.
Im feel unsure of EXACTLY what i should ask the gp for, and how to then proceed.
My head feels so off, I feel like I can't process anything...
Definitely get your ferritin tested now since that is the first thing your doctor should have done.
Don't take pregabalin in the morning. It is meant to be taken at night. And if you wait until 1 hour before bedtime to take it the side effects shouldn't bother you, and hopefully they will wear off in a few weeks. If they don't and you can't live with them you post back here and I will have some advice. Or you could simply stop taking it now and wait until you are 3 weeks away from stopping pramipexole since it won't help much anyway as you have found out until you are off pramipexole for several weeks and your symptoms have settled. In any case don't take another one when you wake up at night so the side effects don't bother you in the morning.
The slow release tablets last all day. You could ask your pharmacist. But since you have been taking one during the day and one at night.
Go back on the .18 ones but tell you doctor you want to slowly reduce it so ask for (insist if necessary) a prescription for the .088 ones and the .18 ones since you will need both. Then you Take one .18 tablet and and one and a half of the .088 ones for 2 weeks (get a pill cutter), then one for 2 weeks and then one half one, etc. As I mentioned above 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. If you want to reduce with a smaller amount you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
Sue can you help please I have had r l s for 75 yrs I am 87 now, I think I have had all the meds but at the min I am on 1. 40 mg propranolol 2 o,o88. Pramipexole also 2 tsp Oramoph , I have r l s sessions every day for about 5 or 6 hrs it is so painfull I don’t know what to do if I go to the doc he will say what do you want to try thank you
Could you be anemic, Sleepless? Or very low on iron? Any other medications besides the Prami, like an antidepressant or birth control or melatonin? Any other medical conditions that you know of ie diabetes, auto-immune disease? No matter what, it sounds like your next step is a “full work-up” as it is called. Insist on it, if this hasn’t been done recently. No one on here can offer you any type of sound advice until we know more about your medical history, outside the realm of RLS.
Sue gives loads of good advice, but she forgot to inform you first of what is going on. You have been on a (far too) high dose of pramipexole for a long time. This has worsened your symptoms, which is called augmentation. Then, you were given 75 mg pregabalin, but you stopped the pramipexole completely. Now you experience withdrawal from the pramipexole, which is usually horrific and can last a long time. The pregabalin is often good for RLS, but will not help with and during the pramipexole withdrawal.
You need to restart the pramipexole. It can be combined with pregabalin. And then start the slow reduction as described by Sue. And get the iron panel and then (most likely) increase your iron. And check for any medicines you may take that may worsen RLS. All things in Sue's post and the Mayo Clinic updated treatment algorithm. You need to educate you gp.
Finally, as you are in the UK, check out the rls-uk.org website. And read contributions from Joolsg, Pippins2 and Kaarina (moderator) for UK specific issues.
One more: pills can be cut, but not if they are slow release. The 0.18 mg pramipexole may be slow release. Check that.
We are here to help and support. Stay tuned and read. Loads of info. You'll get better. Promised.
Yep, GP stopped the Pramipexiole prescription as soon as he wrote the Pregabalin one! No advice to combine and reduce the Prami He told me to take 75mg in the morning, and 75mg in the evening. I cant - the Pregabalin makes me feel very strange - fuzzy? A bit detached? Hard to describe. I'm not comfortable driving on it, so a morning dose is not an option :(I'm not sure if the 0.18 prami is slow release or not. I have 5 left of them, so will try the doctor tomorrow. Should I ask for non slow release? My symptoms are 24 hrs. I can take the Pregabalin at night (but as yet, they haven't made any difference, even 2 of them, I still had to then take a Prami too), but not day time. Im just not sure what to ask gp for, and when to take, what
Going to carry on reading replies now, so I may find answers as I go.
I didn't realize you had stopped taking the pramipexole. LotteM is right. Go back to your previous amount of pramipexole and start reducing from there and make sure it is not slow release.
You poor thing! I'm sorry to read your post-it's such an awful place to be and we have all been there. You do NOT have to suffer like this! You can sleep through the night within a couple of days if you order Kratom red strain online asap. I believe the UK uses kraatje.eu and it comes as "tea." GaryHB in the UK orders it from kratom.org. This is new (to me) and wonderful as recently UK members could not openly get it.
It stops RLS within minutes. Use the Kratom until you figure out another solution with the help of this forum. It totally saved me for a period of time, no doubt. Hang in-you are going to be out of this soon!
On the UK website, there's lots of Kratom with 'red' in the title - Red Vein, Red Sumatra, Red Borneo, Red Raiu... loads! Which one should I be getting?
Oh, sorry for the delay-dang, I know you need to order. Usually any red works, but for now, if you haven't yet ordered, get the Red Borneo. Some sites offer small sample packages, so be sure to ck for that! Please let me know how you're doing!
I'm so sorry. Yet another completely ignorant UK GP who knows zero about RLS or drug induced worsening caused by Pramipexole/Ropinirole.Read Boofoo71 post from Monday. Like you, she's suffering drug induced worsening.
When you told your GP it was worse and had moved to other body parts, he should instantly have realised Pramipexole was making the disease worse and advised you to increase serum ferritin after full panel, morning, fasting blood tests and to slowly reduce Pramipexole.
To clarify, you were taking 4 x0.088 pills a day and the GP switched you to 2 x0.18 pills a day? 0.088 pills contain 0.125 mg of Pramipexole. 0.18 pills contain 0.25mg of Pramipexole. So effectively a straight swap? Or do you take the 0.18 pills 4 tes a day?
First thing you have to do is accept your GP does not understand RLS or the dangers of Pramipexole. It's hard to take in.
But RLS isn't taught at ANY stage in medical training.
We are getting more and more people on here daily with the same problem. There are hundreds of thousands in the UK on these drugs and they will ALL experience augmentation eventually. It's a medical scandal/ catastrophe.
Sue has set out a sensible schedule of reduction. Follow it.
Once off Pramipexole, you can increase the pregabalin. It really doesn't help much while your D1 receptors are screaming for their hit of dopamine, but it will help when you have completely stopped Pramipexole.
Get full panel, morning, fasting blood tests asap.
Raising your serum ferritin above 100, preferably 200 now will also help reduce the severity of the RLS. Iron pills or better, iron infusion will raise levels.
You will also need a low dose opioid to settle the increased RLS at each reduction. Codeine 30mg, tramadol 50mg or oxycodone 10mg.
Learn all you can, join RLS-UK, and print off the articles on augmentation to show your GP.
You are very young now. It's harder when you're older and more likely to fall from exhaustion during the withdrawal.
Plan 2 weeks holiday for when you drop the last dose because withdrawal is brutal for the vast majority, with little or no sleep for days, and increased RLS. But once through withdrawal, the RLS becomes less severe and affects the legs only.
Dr Winkelman talks about augmentation in this article.
Hi, yeh, it got to the point of needing 3 or 4 of the 0.088 a day. Doc would only prescribe 60 at a time, so costs were adding up. When I called to say I'm struggling, his response of "what do you want me to do?" Was very much a condescending "what do you want ME to do about it?" Rather than a genuine "how can I help you?"
I said I didn't know what was needed, so he actually prescribed 0.18mg just once a day, at bedtime. But that quickly didn't work, so I was taking 2. Usually one arpund 3 or 4 pm (as by then I would have had a good few hours of symptoms) then another as late as possible- usually I stay up until I can't stay awake any more, so I can take the second tablet as late as I can, in the hope of staying asleep beyond 4am.
But that stopped working too, so was back to waking in the night again. So last week, called GP again, he offered to up the Prami again, or try Pregabalin. I chose Pregabalin. He just said take 1 per night, I said but symptoms are ALL day, so he said 0.75mg morning and night. But I cannot take the Pregablin in the morning. They make me feel very, very strange. I wouldn't drive on them.
Im really worried- all the posts so far say I'll really suffer as I reduce the Prami (if GP even agrees to put the prescription back on) - I can't take it.
Last night, I took a 0.18mh of Prami at 7pm (I had a 30 min drive home, so couldn't take the Pregabalin) I then took at 0.75mg Pregabalin at about 11, and went to bed. I was awake by 4. Legs awful, arms bad.
I felt exhausted, fuzzy.
I stuck it out until 6am, took another 0.75mg of Pregabalin.
Legs were still bad, but head felt awful - really 'swimmy'? A bit like after the first couple of drinks - youre not drunk, but not sober? Eyes I literally could not open. But my brain was fully switched on, and legs were so bad.
I needed to get up to stop legs, but just couldn't move cos of the Pregabalin.
So I was trapped, unable to fix either issue.
I eventually went back to sleep, I think around 8am.
Woke at 10.15am with legs going mad.
Got up. The fuzzy feeling is still there now - its 5.35. I just don't feel quite right?
My son is 11, he's quite unwell. I'm.his only carer. We have regular appointments for him.
I just cannot have any period of time "off". I cant spend any time with zero sleep, or so out of it I can't drive.
I feel totally trapped It feels right now that upping the Prami is my only option, but I know this will only work for so long, before I'll be back here again.
Ok. This is really, really bad.Your GP needs to understand this is REALLY serious, medical negligence.
Can you ask to see the practice manager? Do you have friends or family who will read all our advice and go with you to the GP and insist he help you through withdrawal?
If you have 0.18 pills, they're difficult to reduce.
The GP MUST give you back 4×0.088 pills.
Take 3 x0.88 and 1/2 a 0.088 for 2 weeks. Then reduce the other half and carry on reducing half a 0.088 pill every 2 weeks.
Take the 75mg pregabalin 2 hours before bed. Do not take it in the day.
It will NOT help your severe RLS until you're completely off Pramipexole.
Tell your GP that. We know what we're talking about. We see it every day on this site.
Ask the GP for 50mg tramadol to take when you drop 1/2 0.088 pill for a few nights. Explain that you're suicidal. It's his fault for not reviewing you regularly. Pramipexole will Always cause a severe worsening of RLS. Tell him to google Pramipexole and AUGMENTATION.
Insist on blood tests as raising serum ferritin and brain iron will REALLY help.
If you can afford it, book an urgent private phone appointment with Dr Jose Thomas at Gwent Sleep Clinic or Professor Matthew Walker at Queen Sq. Both will consider iron infusions and low dose opioids to get you off Pramipexole.
I don't normally recommend kratom because it's illegal in the UK and quickly builds tolerance so ends up causing problems. But for short term, desperate situations like yours, it can really help to get you off Pramipexole. Take 1teaspoon mixed in hot water and then diluted with orange juice because it tastes FOUL. Use sparingly so you don't develop tolerance.
I promise that once you're off Pramipexole, your RLS will really reduce in severity, and only affect you at night and in your legs.
Kratom is sent out as Moringa Herbal Tea. Or capsules. Red vein borneo works!
Thank you for all this. I'll call the gp again tomorrow. I've taken a 75mg Pregabalin today at 5.30, dodnt do anything, so took a 0.18 prami at about 8, as legs were driving me mad ne then. Fully expect to be awake by 3, but think I'll just have to deal with it tonight, and get on to gp first thing
Buy some solpadine max. They contain a small dose of codeine, not enough to control withdrawal symptoms, but it might take the edge off.I do hope your GP surgery listens.
Keep a diary of the appointments and calls and the advice you are given
You may need it later if you go through official complaint process or if you decide to bring legal action against your GP when you're in a stronger position and off this poison.
Will you doctor not act like a complete paranoid moron if you ask him to let you do a 30 day trial of an opioid? Maybe after he sees that it works for you, he can help you maintain a steady dose for relief. I'm so sick of the backlash against a perfectly good and often life saving drug. I'm pretty sure I'd have seriously contemplated suicide by now if I didn't have my Vicodin.
I am so sad to read about your plight BUT you can rely on the support of fellow sufferers on this forum, not your GP, to plan your way forward. There are several very helpful and knowledgeable people, such as Sue J, Joolsg and Madlegs1 who have already replied with help so i will not say much more than to add my support and experience.
Because of the lack of knowledge in the UK medical profession about RLS i was tipped into DA augmentation after treatment with various drugs including pramipexole and rotigotine.
It was awful so i know how you feel but now I am on a plan prepared with the help of this forum and am feeling much better . However it takes times (months rather than weeks) and you have to try keep your GP "onside" to get the drugs you need such as a slow release opioid (oxycodone) which I currently take with 150mg of pregabalin (similar to gabapentin)
So stick with us and keep chatting you will learn a lot and that in itself gives you a way forward
Horrible GP ignorance! All this pharma intervention when simple iron supplementation may have been (and still could be) the key solution. RLS during pregnancy is a telling iron deficiency as the growth demands of the baby drain the mother's iron stores. Great advice above - good luck!
Sleepless forever, I am so sorry to read about your story. I’m sure 85% of us can relate. We have all been there. I have nothing to add as you have been provided with perfect suggestions. I hope that you will follow them. Good luck to you! Read and learn. I also share with your GP or find a new one.
I’m so sorry you are suffering so much. You sound like a text book case. Can you see a different Doctor? If you can afford if, see someone privately? X
Private is definitely not an option - all my finances go into caring for me son. I'll see about a new GP, but they get so 'funny' about you saying they've not helped
I'm here. The last few days have been awful. The Pregabalin is making me feel horrible. I'm almost out of Prami, am going to try the doctor tomorrow morning. I'm working my way through all the posts, making notes, so I can go in 'armed'.
Hi all. Update. I've spoken to a different GP (who again said "what would you like me to do") So, I now have 30 of the 0.18mg Prami, 30 of the 0.88mg Prami, 30 codeine and 60 of the 75mg Pregabalin.
Before they gave the Pregabalin I was taking usually 2 x 0.18mg Prami, 1 in the morning, 1 at night, and symptoms were still bad.
So, on that basis - what do you all advise I take, and when? I'd like to wean off the Prami, but with the least amount of increase in symptoms, and eventually just be taking the Pregabalin?
(I took a Pregabalin at 4.30 am today, and actually didn't wake up feeling totally out of it this morning, but I'm still wary of Pregabalin during the day, as it just made me feel very strange)
This last week, I feel I've been just popping pills, with no knowledge or guidance of what's ok! Its quite scary
Hi, you advised reducing by half of a 0.088 tablet, every couple of weeks, but I wasn't on the 0.088s, I was on 2 or 3 of the 0.18, so I'm unsure on what I should take each day?
Ah, ok, I understand! This is great, thank you so much for your advice. Do you think I should also continue taking the 75mg Pregabalin, as I've already started them? I'm wondering whether I keep taking 1 a day, whilst I wean of the prami, then maybe the side affects of the Pregabalin might ease, before im on just those?
Sleepless, I recommend trying two capsules of ferrous bisglycinate one hour before bed on an empty stomach. Get your doctor’s permission. Put two hours between that and the Pregabalin.
It helps a lot of people. See third reply in this post.
Here’s the link. If the iron works for you, the way it does for the rest of us, you will get a good amount of relief from first night. Third reply in post:
I sympathize with you so much I have had RLS for over forty years I had an operation in January this year to remove a very large Polyp The anthisthectic obviously increased my RLS symptoms because before the operation I was able to cope with RLS as it only happened once or twice a week
Tonight it is almost 1:00 am and my legs arms eyes neck seem like they are on fire My doctor tells me he knows nothing about RLS He won't tell me who to contact He put me on Ferrous Sulphate several months ago and then took me off them when my iron levels got slightly better but still below normal
I live on my own in sheltered accommodation I won't sleep tonight and haven't slept properly for months and months
I sincerely hope you get some sort of relief because at this point in time my RLS is as bad as it ever has been
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Desperate need for help with RLS
Help desperately needed ! 
Help RLS during daytime
