I know just exactly how you feel with the all over body syndrome as well as in legs. Its woeful and i had 2 of my GP docs tell me too there wasn't anything other than Pramiprozole which i had a devil of a time getting of. I took sleeping tabs from doc they were no use didn't help at all then i was given Diazipam no good either while trying to cut down. But i discovered myself Ampitripyline which I'd been prescribed in past for a Neurolgia pain i have but they didnt help that but they surely helped me reducing and stopping Pramiprozole. I now take 1 x50mg at night to keep the rls/Body away. And it does. So if you havent yet tired or are still looking for something get your doc to proscribe Amitriptyline 50mg 1 at night..brill for getting a good sleep too no daytime grogginess either next day. Cant believe i discovered it myself as with other pains self diagnoses was the best route. My doc actually ask me to let her know if i found something that helped imagine that.
RLS--Monsterous.: I know just exactly... - Restless Legs Syn...
RLS--Monsterous.
Hi Lilmo,
It is good that it works for you but .....
Amitriptyline is listed as one of the medications to avoid if suffering from RLS. rls-uk.org/treatment/
Most sufferers find it makes their symptoms much worse.
I’m in agreement with this list but notice that Trazodone isn’t mentioned, which kills me! They’re always trying to give it to me for sleep, but is a complete oxymoron! I sleep around 3 hours a night and have the full-body reaction too. I feel sometimes like it’s a curse or some kind of payback for something I did in my past! While I’m suffering, I just can’t figure out what I could have possibly done to deserve such agony...
Hi GratitudeFirst,
I am sorry to learn that Trazodone is like "poison" to you. Members of this community do suggest that Trazodone does not generally worsen RLS symptoms for most, but you are unfortunately, in the small minority, where it does.
Lucky me...yay!! 🌺😉🌺
Please, GratitudeFirst, RLS is NOT a payback for something you did in your past. It is a medical/neurological condition, plain and simple. Try offering some compassion and kindness for yourself. RLS is bad enough by itself; don't pile on any misguided self-recriminations, which only make it worse. You are NOT at fault! Meanwhile, talk to a doctor, preferably a neurologist with some experience with RLS, if you haven't already. Then get your blood iron (ferritin) levels checked; you may need oral iron or even IV iron infusion to get that level up. People with RLS often need to get their ferritin level up over 100 (even up to 300) to see any improvement. Then get some medications if needed, focusing first on alpha-2-delta drugs like gabapentin or pregabalin. Try to avoid dopamine agonists like pramipexole or ropinerole, if you can. Then try some soothing treatments for yourself like an evening warm bath (although some of us find cold treatment more effective; experiment.) Good luck, and be kind to yourself! You deserve it!
Thank you so much for your kind, logical words of wisdom! My GP isn’t educated regarding RLS. My health insurance benefits go into effect next month and I’m thinking about seeing a Neurologist, one that specializes in RLS. I’m currently on 1mg of Mirapex at night which is way too much! I was on 1mg in the am and 1mg in the pm and have weaned myself off of the am dose. Augmentation is a problem! I have tried many things, and the most helpful has been cannabis! The obvious problem with that is the unavailability to purchase it legally where I live. Illegally, the availability is inconsistent at best. On work days, my symptoms are magnified by the extreme activity that’s required. I thought extra activity would help the condition, but I was wrong! My whole body gets involved. Until I can afford to see a Neurologist, I’ll keep on taking Mag, wearing support hose, using ice packs and praying for cannabis! Thanks again! 🌷🌞🌷
Gratitude, well done for reducing your pramipexole so substantially. I would suggest that a co-operative GP can be as useful as a neurologist. The experience with neurologists seems to be very hit and miss. I have seen some people post the most dreadful advice that they were given by neurologists - unless you are lucky enough to find one who specializes in RLS and they are like hens teeth.
It’s unfortunate about the cannabis when it works well for you. I have to confess I got so fed up trying to source it (illegal where I am too) that I ended up growing a plant myself which was .... interesting. My children think the reversal of roles in our house is hilarious (they are late teens and early 20s).
Have you considered trying Kratom? - also widely illegal but very effective against rls in most sufferers and helpful for getting off pramipexole. It is less difficult to get a supply of than cannabis as can be ordered by post. I would say it is as effective as opioids but MUCH easier to withdraw from - speaking from experience as have withdrawn from OxyContin and regularly withdraw from Kratom. Reading back over this I sound like a completely lawless junky - All the drugs I take are to treat my rls. I am not a recreational drug user at all and really wish I had no need of the drugs I take.
Hello involuntarydancer!
Yes!! You do sound like a druggie! Just kidding...😉 I haven’t had good experiences working with Neurologists as most of them come off as dumb as rocks, but my GP doesn’t get it at all and I’m at a loss! I thought I would give it a try once my insurance kicks in. I don’t know anything about Kratom. Where do you get it?
I can’t remember where you are based but if in Europe you can order it from Amsterdam - I get mine from dekratomshop.nl. In the States, it is legal in some states and again can be purchased by post.
It’s actually the dried leaf of a tree that is native to South East Asis (I think). It’s vile stuff but it really works for the legs (for almost everyone - there are exceptions). It was legal in UK and Ireland until a couple of years ago - it was what ‘head’ shops were selling. It does give a mild euphoria but in my view only a madman would force it down for the recreational impact.
It’s not for everyone because obviously, being illegal, it’s not subject to the usual regulations that ensure the purity of our more legitimate foodstuffs and medicines. I resorted to it in desperation but now find it a very useful tool in my rls treatment arsenal. What I particularly like is that you can take it as-and-when - you don’t need to be on it all the time. You could order a small quantity - 100g - and try it. Red vein Borneo is the strain most rls-ers start with.
Thanks so much for the info...I’m going to give it a go! I’m in the US.
Careful! You’ll end up as big a druggie as me. I too started with a far too high dose of pramipexole - it’s the ultimate gateway drug.
Haha...I’ll take my chances! I’m dispense narcotics and benzos all day at work and they hold no magic for me! I just wish I could say the same for the other nurses!
Go you! Keep the flag flying for those who really need these meds for some dignity and quality of life. I just notice an older thread about Kratom has been resurrected about two down from this one. You’ll get loads of info about it if you put it in the search bar. I wouldn’t tell the other nurses about it though.
Love and appreciate your humor! 🌞
Hi Optimist
When i came to the med names of Pregablin and Gabapenitin i cringed i agree full well with avoiding like a plague Pramiprozole and Ripinole especially the first one which i was put on by my GP to my demise. I've wrote about it in my post on here. Well i was put on Pregablin then at another time Gabapenitin its Lyrica and Neurotin i found them so difficult to get off especially the Lyrica it was for the Neurolgia i have which neither touched i still suffer with it daily its known as AO Atypical Ondontalgia. Its fantom tooth pain like toothache but it isn't teeth are perfect its a nerve gone haywire sending pain to there..teeth. i would never take them 2 meds again took me an age to come off.
I'm sorry to hear of your phantom tooth pain, and of your issues with pregabalin and gabapentin. Are there any other meds that have worked for you, either for the ondontalgia or for your RLS? Have you had your blood iron (ferritin) levels checked? It's possible that iron therapy (either oral iron, or IV iron infusion) might be beneficial for you. The RLS experts say that people with RLS need to get their ferritin levels over 100, and possibly as high as 300 or more. This is much higher than the "normal" levels for non-RLS people.
My iron levels are all A OK i have my blood checked every 3 months and my GP has all else checked. I have had Radiofrequency carried out a few years ago but the wrong facial nerve was burned off therefore it did nothing for the middle nerve that should've been done.
I am waiting now on an appointment to go back to same professor who carried out the routine he said he can do a different procedure and inject straight into the gum where the pain is he said it was very painful but it could be anymore painful than having the nerve burned off as that was unbelievably horrific i can only compare labour 1as in giving birth in the same dept.
Between RLS, AO which is fantom tooth pain, Bipolar, lower back prolapsed discs, Bursitis, but who's counting as there are many others suffering more than myself. I have faith in my God who comforts me.
Hi Kaarina
I find Ampitripyline is the only med that has helped me as it has settled all my symptoms down well i thought i was gonna go crazy in fact i sat some nights on my own early hours of the morning having not been to bed..found myself crying out to the Lord for help as i really cudn't heck it. I have other pain in my body which i can on a daily basis manage to live with but i just cudn' t cope with all that twitching so I'm so pleased and relieved that Ampitripyline came through for me anyway.
Sure everybodys different what might help me won't necessarily help you.
It can't be said that a certain med wont help as we are all made different.
Well done for working this out by yourself, lilmo. And so pleased amytriptiline is working for you. I have read of one or two others who find it helpful so you’re not alone - though you are in a tiny minority - it is true that it worsens rls for most.
Was Pramiprozole made mine worse after being on it only a short while. Thank you for your encouragement on Ampitripyline i am able to miss a few nights so i don't need to take it every night. Thanks again.
Kaarina
As for Pramiprozole which i was put on it made my RLS far worse it went through the roof and caused Augumentation as well i tried weaning of with firstly sleeping tabs prescribed by my GP no good was given then Diazipam still hopeless not until i started Ampitripyline was i able to reduce and finally get of it.
I can now do without taking Ampitripyline 50mg every night i can go a few nights even without but i do then take it again juat to keep the RLS thing at bay.
Hi Lilmo,
Amitriptyline is poison for 99% of people with RLS and makes it worse for us.
It sounds like you are the rare 1% for whom it works.
It’s on the list of drugs to avoid if you have RLS along with most other anti depressants and anti histamines.
Well done! We all need to be our own doctors as we are the only ones who understand what's going on with our body. (most of the time it's really difficult cause we don't have knowledge or access to knowledge regarding available drugs and such...).
Has your doctor contacted Relaxis in Southern California. It cured my RL. Claudine
Seafall
Isn't Relaxis very expensive ive read up about it but think i remember it is?
I went into my savings account and it was worth the $900. They also have a free trial. A year ago they were trying to get it covered by insurance. Call them. Email them. Now the RL are gone I would have paid 2x. I even exchanged it for the battery travel version and paid more. Ask friends to donate $ for Christmas or birthday. I am convinced it works for a faithful user. Claudine aka seafall
Hi Lilmo1!
I just started posting in this forum after quietly reading and learning from it for quite some time and found your post interesting. FWIW, I would echo what others have said about any sort of anthistiminergic drug tending to worsen RLS. I too was once given amitriptyline by a misguided neurologist once and it was an absolute horror, lol. Personally, the benzodiazepines (valium, xanax, ativan, etc) all worsen my symptoms as well, although I'm not sure why.
As a sidebar, if you're interested in this sort of thing, amitriptyline is kind of fascinating. It's typically prescribed as an antidepressant, but it's "dirty" in that it has many effects in the body that it often becomes used for - basically, it's side effects are often used to try to treat other things. One side effect is spectacular potency as an antihistamine which can obviously promote sleep, but as said tends to really worsen RLS. Interestingly, it's also powerfully anticholinergic, which causes a common set/group of side effects including constipation, blurry vision, dry mouth, and difficulty with urination. It's so associated with the latter that doctors will often prescribe it for children who have chronic bedwetting issues! Anyway, i think many docs go straight to it for help getting people to sleep without understanding that it an really worsen RLS.
That said, it's very hard to find a clinician who has studied this disease, isn't it? I've personally found sleep/wake specialists to be the specialty that best understands it. If you have access to one, it might be worth making an appointment. In my experience they tend to go straight to apnea and CPAP since that's their bread and butter, but given that many people find their RLS is helped by that approach, it's probably worth looking into and excluding, if nothing else. They're also much better versed in the various drug approaches, iron infusion, even various devices like restiffic etc from what I've found.
Personally, my RLS is still a pain in the neck because I have to accommodate it every night by taking medication, making sure i never run out, etc, but I got my quality of life back 100% once I started seeing a good "sleep doctor!"
Hi Bhogan
Thank you for your interest in what i had to add on here.
I have not had any difficulty with my water works not at all..but hand on heart i have to give dirty Ampitripyline a standing ovasion for the help it has given me.
It got that i daren't have put my legs up on sofa it just wouldn't let me do that at all..i cudn't get a full nights sleep, I'm not a good sleeper at best but RLS really was the bain of my life. It reduced me to tears many times. It was the Pramiprozole that made it 100% worse and to get of that was nightmarish.
I can not applaud Ampitripyline enough maybe i am in the 1% that was said I'm not going to complain about that.
I actually diagnosed my neurological pain online as docs couldn't nor my dentist AO Atypical Ondontalgia pain like a toothache everyday but not when i sleep i get respite only then theres not a med my doc has prescribed that has helped i use a numbing gel and chewing gum to help me get through the day. But i agree fully its all up when we got to diagnose ourselves but that's what its come to these days.
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