I have had just over a week straight of really extreme restlessness and terrible pain ,stabbing /burning even biting pain in my lower legs ankles and feet , i literally feel like cutting my legs off !!, this has been since trying a new drug combination of Neupro (24hour) patch and lorazepam (used as a relaxant )for break through rls. ) I took/used these for one week and had to stop because I felt so much worse and could not sleep at all . Now I'm exhausted . before this
I was taking pramipexole (4 tablets a night ) but was advised to just replace them with the new meds . I have now survived a week with only using oramorph (5ml) in the evening's the oramorph is a bit hit and miss with the restlessness , and I am trusted to use morphine as i would not abuse it . I have found some benefit from having Clary sage oil in my baths for pain ,and chamomile rub after wards , but today it's getting out of hand again ! , I'm just so tired and quickly running out of ideas , i don't want to up the morphine amount till I have spoke to my gp , and I'm also wary because I don't want it to be taken away all together, for another drug that just doesn't work , I have tried many ..ropinirole I remember ...and quite a few more I don't remember , sorry for rambling a bit , but am I overlooking anything I could try , i have also been using co codamol in the daytime but once only as i don't want to upset my digestive system too much either . Ugh , so so tired... and agitated.
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M_argi
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It's difficult to make out your history- but if I may recap- you have been on various dopamine medications ( for how long / what doses?) finishing with Prami at about( .088 ×4 = .35) ?
You were then given more DA (neupro) along with a benzodiazipine.
You did not taper off the prami- what dose is the patch?
If there isn't a sufficient taper down off the DAs then you will get withdrawal symptoms. If you changed from the Prami because of augmentation , then the same situation occurs.
You really need to get to a knowledgeable doctor or sleep clinicto get your condition sorted.
Come back with more information and correct me where my assumptions are in error. Maybe then we can advise you more.
All the best.
Meanwhile- if you have access to Oromorph , you could take what you need to relieve your symptoms along with the Lorezipan at night.
But get some professional help soon. Or you will continue suffering needlessly.
Hi madlegs,i have been treat with various drugs since around 2009 for restless legs, i can only remember lyrica 150 mg twice daily , ropinirole ,then a break and a brief other drug thst I don't recall the name I was put on pramipexole last summer ,and you are right in the amount of that ,it ceased to have an effect and the doctor replaced it with Neupro 2mg/24hourand the lorazepam 2.5mg 1 or 2 twice a day when required ,that was 2 weeks ago , i took for a week found I could not sleep at all so stopped them . I wasn't given an option to taper off the pramipexole ,just to start the Neupro . I was diagnosed with fibromyalgia in 2004, 3 x bulging discs and widespread osteoarthritis 2009 also have other illnesses Inc vertigo ,ibs, and the usual symptoms associated with fibro. also sacroillac joint dysfunction ,Tmj, and quite a few more things .
I have a few regular medications to treat the issues . One of which is amitriptyline which over months I have got down to 25mg per night . I also suffer migraine .
Meds are,
B12 injections once every 3 months
Fit d caps two monthly
Amitriptyline 25mg at night
Propranolol 40 mg one at night
Betahistine 16mg 3 times a day
Senza one at night
Lactulose 10 ml twice daily
Esomeprazole 40 mg one a day
Folic acid 5 mg one a day
And morphine for breakthrough pain 2.5-5 mg up to 4 times a day .
There are also many triggers to avoid that set off rls- high salt , high sugar , artificial sweetener and colours , alcohol, raising agents and many more.
You could Google your various medications " med and rls" which may throw up some interesting snippets for you.
You are almost certainly in withdrawal from dopamine agonists. You were on a high dose of pramipexole ( after taking Ropinirole, another DA) and then you went straight on another dopamine agonist in the form of the neupro patch.
First, can I ask why you switched from Ropinirole and then from Pramipexole? If they were no longer working, you can safely switch to another DA BUT you cannot just switch to another DA if your RLS symptoms were getting worse, becoming more intense, starting earlier in the day and/or affecting other body parts like arms, back and hands. That is Augmentation and if that has happened to you on one DA it will happen very quickly after you start a new DA.
I suspect you were suffering augmentation so the switch will just have made your RLS 1000% worse.
You need to go back to your doctor,who clearly does not understand how DAs work or what augmentation is or how hellish withdrawal from DAs can be.
Take some info on augmentation from this site with you ( print out the pages) and ask to be put back on pramipexole so you can taper off it properly. You should reduce very slowly over several weeks but you will still suffer withdrawals. It is called DAWS ( dopamine agonist withdrawal syndrome) and it will last for several weeks as you taper down from the last dose. It is very difficult and you will need opioids. Oramorph is a good option so speak to your doctor urgently to get a supply while going through withdrawal.
Also, get off amitriptyline and anti histamines as advised by Madlegs. Wellbutrin and Trazodone are safe anti depressants for RLS and claritin is a safe anti histamine.
Once through withdrawal, you will have to have meds in place to take instead of pramipexole. Pregabalin works well for RLS up to 300mg. Titrate up slowly though and it takes around 3 weeks to be fully effective.
Also get your bloods tested. Your serum ferritin needs to be above 100.
If in theUK, ask for a referral to asleep clinic as they will be more knowledgeable about RLS.
Take the oramorph at night to calm down the RLS until you can see your Doctor.
Thanks for that , i appreciate everyone's concern and too the advice given , i have been on a rollercoaster but , stuck to the 2.5- 5 ml of morphine and a 2.5 mg of lorazepam in the evening's , and a magnesium and clary sage bath in the morning followed by just a couple of paracetamol , and things aren't too bad, not thst anything about restless legs is normal but it's finally settling down to how it was before I had the pramipexole,
I have been under some stress too , my daughter is in labour so, waiting for a call to go be with her , i think I have calmed a lot since her situation (there were some complications ) was stabilized . So I have not had chance to see my gp ,, who I will be having that conversation with about "drugs".
I have seen my physiotherapy GP,who agrees that I need to have a full adjustment of meds , or even to come off as many as i can without harm no matter how long it takes .
I agree with bodziu: Im amazed at all the meds and horror stories. Ive only ever been given Sinemet and it only worked for 1 month. The repeat was useless and my Dr shrugged: end of that story. Ive had it since childhood and im finding that a lot of things effect its occurrence like heat on the legs, too much sugar before bed, not enough salt, too much exercise and too little exercise, emotional upset too.... Im sorry for your pain but i know nothing about all these medications that most are taking but If you research this site and others you may find the key or keys to help and I suggest starting a Pain and RLS diary with foods and activities and anything else that could be triggers. I hope one day you will find the cause or causes for your rls. I hope we all do.
Thank you , sorry for the time to get bk to you , i have been with my daughter during Labour , once the baby was born after I don't know how many hours I kinda crashed with fibro rls, migrain etc , but I survived , a magnesium bath that i fell asleep in for a couple of hours, and to my surprise I had no rls for 2 days solid !
I am making notes , and observing triggers , an interesting aspect that in have only today thought about is the mold and damp weather combo, let's face it up north in the uk is pretty damp most of the time , but my rls seems to quieter down in freezing weather as well as hot weather , but when it's damp it goes mad ,so, more to add to my notes ..but the magnesium is a winner ! for me anyways .
Thanks for answering M_argi. and congrats to you and ur family on the happy birth.
Im in QLD, Australia so damp isnt an issue here but 2 or 3 days pre- rain my RLS goes into hyperdrive, Im assuming its the humidity or lowering air pressure and even when Ive been good with avoiding sugars, stress and my other triggers and taking my natural preventatives! Also heat on my legs is very bad and the laptop on my lap is no longer an option. I must sleep with an aircon chilling my legs. Ive had my share of injuries and recently my physio instructed me to learn to do separate buttox squeezes to strengthen that area. Last night I was a bit stressed over a ph call and "comfort ate" a little piece of cake before bed. I woke after about an hour and noticed the first signs of impending RLS as restlessness so I started doing my butt squeezes and the RLS didnt become full blown. I have NO idea whether it was the actual exercises that helped or the fact that I was concentrating on doing the squeezes properly....after that, sleep was lighter than usual but No RLS... Incidentally winter here is generally better for the condition than summer but I guess our winters are much milder than yours. I wish you well in your search.
Damn it , i wrote a reply and then lost it grrr , anyhow, basically , thamk you 😆
I find air con drives me mad , or any draft at all really , i am always with hot water bottle ,even in summer ,in the evening's I like to sit out and I have it in the small of my back , i have three herniated discs ,so perhaps they play a part in this ?
I had restless spine as a child,i remember laying in bed for hours wanting to sleep but my wriggle irritating feeling keeping me awake , but as a kid I couldn't explain it ( not too good explaining now 😜)
Right I'm off to bed to do the 'river dance ' Michael flatly , kindest wishes xMx
Ohh Dear. it sounds bad. I have the disc thing happening too. I need the aircon only on my legs... I have to cover my top half and thanks to my breathing machine (CPAP) I can fully cover my head against the aircon. It sounds crazy like Im hot blooded and cold blooded in the same body. Also like you, as a child my legs were restless and my parents put it down to growing pains. We were a poor but hardworking family and my fathers philosophy of Doctors was that they weren't needed unless blood was gushing out or broken bones were protruding ... Doctors way back then were NOT an option. I hope u sleep well. God bless
Ahh similar childhood, i never saw drs much or visited hospitals for injuries or when I did it was 'a big deal' , once had a broken arm on the Sunday and didn't go to hospital till the Tuesday ! But I wasn't a complainer and came from a large family both mother and father with illness, probably caused by over working as well as genetics .
You know I can remember sleeping with my whole body having to be covered up ,head too , but also back then in the 1970's there was no central heating and single glazed Windows ,getting dressed to go to bed in the winter's haha ... but we didn't know any different , when I first experienced central heating I couldn't breath , part of fibromyalgia ,the sensitivity to any change ,i must have had it back then too, esp the heat cold and sound thing , i was led to believe thst RLS is just another of the many symptoms of fibromyalgia, but atm it's the one symptom I haven't much control over esp in the winter months . Trying to live an "uncomplicated" life ,stay upbeat ,with simple pleasures . it proves difficult . Blessings to you too .
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and sleep well
for me anyways .
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