My Nan has been suffering from RLS for several years now.
Last week I honestly thought we where going to lose her as she started spasms that where uncontrollable she could not catch a breath was going blue in the face and was screaming I cannot take anymore of this or just want to die...
It was the worst attack of RLS I have witnessed from her after staying with her for 2 yrs now...
I called the Ambulance and she was rushed to hospital. The Ambulance took an hour to get here and was the worst hour of my life watching her fanning her and trying to keep her calm...the spasms were horrifying to watch, also had one of Nans nieces on phone listening to the full episode, which she said sounded like something out of a horror film.
Once up in hospital we found Nan lying in a cubicle herself screaming out help me please help me while spasming in pain...
This lasted another several hours...Now I know no one knows the causes of RLS as this was aparent as they did not know which department could help her or indeed which to refer her too as no one knew about RLS (All they saw was a lady shouting screaming and spasming in pain)
She literally would spasm herself to sleep and believe me this is something you do not want to go through EVER!
I spent the next three nights in hospital with her by her side just trying to calm her and relax her when the spasms hit..
They calmed down a little after doctors tried her with every pain killer imaginable.
Now on the fourth night Nan started spasming around 10.10pm and lasted for two and a half hours...I was by her side fanning her and trying to move her on her side which sometimes eases the pain...she eventually exhausted herself to sleep again
, And I went back to the family room exhausted..I heard her alarm go off again and rushed to her side for another 50 mins of spasms.
I went to find a nurse or doctor and said YOU HAVE to give her something..She cannot go on or last like this any longer...
They gave her diclofenic orally and Boom she fell asleep...
They done this the next night and Hey Presto no RLS and slept through,and again the following night and no RLS.
The consultant came to ward today and said she can come home, I said great but they said no diclofenic I said are you SERIOUS!!!, he said Diclofenic is not for restless legs take the other prescribed pain killers she will be ok with them.
I said NO WAY none of them have touched her!!!! Now for some strange unknown reason to me ,We may have FOUND CURE! ,Possibly just for my Nan but she is not coming out of this hospital without it.
He reluctantly asked junior doctors to prescribe one incase of emergency.
Now I don't know if this is the cure.. But it worked for my Nan and she has just rung the phone so I am now just leaving to go pick her up from hospital and bring her home.
I will keep you guys updated...
RLS is the most horrible thing I have ever been in contact with and if diclofenic or something within diclofenic that they may be able to use works for my Nan ...Then let's see if some consultant or researcher can work this out to help others .
Maybe it just worked for my Nan but maybe it we may have just found a cure...there maybe something in diclofenic that stops the RLS.
Fingers Crossed
And if you have suffered as long as my Nan has with RLS and you do try a diclofenic orally and it works...I am sure you will be happy I posted this.
Regards
RLS21
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RLS21
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As I said.. Nan has suffered from RLS like yourself I presume.
And dealt with neurology... All I am trying to put across here is try a diclofenic by consulting your GP...and if you are a severe sufferer, I am sure you would try anything and if it works ...Well maybe you may give me a more positive reply
Personally I'm so pleased you've posted as it sounds like your nan has the same as me which is "Period Limb Movement Disorder" which is RLS but more severe and effects the whole body. I will try your advice and keep you posted, thanks again
It starts with the legs twitching, then uncontrollable movements.
its is voluntary movements..? She has an urge to move leg legs.. ? Does walking about give her any relief while she is walking...? These are the usual stuff that we have when we get a RLS attack.
Yes Nan says this is true...she doesn't sleep much at night at all...infact she has to get up and walk around mostly all evening...now it usually just hit's her in the evening but has now started during the day...
RLS 21 is your Nan on any of the Dopamine Agonists meds eg Mirapex ( Pramipexole ), Requip ( Ropinerole ) or Neupro patch? Well done for fighting your Nans corner when she wasn't able to herself x
Yes she has been on the pramipexole when it first started.
She is now at the stage were taking 4 1mg tablets of ropinorol in the evening...
Started of with just 1 .5mg tablet and has gradually had to be prescribed the 4mg each evening.
They did work at first but now the RLS sneaks back somehow!
The neurologist has said keep taking the four tablets at night and keeps increasing the gaberpentin dosage each week to try and ease it.
We have another appointment in a few weeks then the next step will be the patches which is the 100% pure ropinorol which would be going into her system all day...I suppose it's just like putting a nicotine patch on which is constant.
The problem I believe with the patches us that they are very expensive.
But can anyone really put a price on taking this horrible RLS away.
We just have to take it stage by stage because just when you think the treatment is working this sneaky RLS fights it's way back.
As pippins has said it sound like augmentation, which happens when take a dopamine med like ropinerole, augmentation happens when the dopamine med starts to turn against you, and instead of giving relief, the RLS becomes worse. Upping the gabapentin dose wont stop the augmentation. You now need to see her doctor and take some info about augmentation, as her doctor probably wont know what is it. She now need to get off the ropinerole but to not take another dopamine med. Getting off the ropinerole will mean weaning down off it slowly and taking a strong pain med like tramadol, which might work this time. The withdrawals from the ropinerole can be tough so she will need a back up med like tramadol or another type of strong pain med. The fact that the ropinerole is causing swelling is NOT good.
Swelling in the legs is a common side effect of gabapentin so keep an eye on it. Once your Nan is off ropinirole, the gabapentin will work much better. It won't do much while she's augmenting on ropinirole.
I would just say to anyone reading this who is contemplating starting to take Pramipexole or a similar drug - DON'T!
These things are horrific! It appears to feel that you've found a cure and then the dreadful augmentation kicks in. The only answer seems to be to come off them slowly.
I think eventually they'll be banned for RLS. the drug companies won't be happy so these side effects won't be well publicised in the meantime so most Drs won't know.
I am a retired GP and am not usually that cynical! I never took these drugs. Something made me very wary.
RLS is dreadful without it being worse artificially.
From personal experience I also think Pregabalin, which is of course related to Gabapentin causes augmentation, though of course it is unrelated to eg Pramipexole.
It's impossible to know for certain or if the RLS would have got worse anyway. There are other reports of augmentation, not just from me. For certain the effect of a small dose wears off and the dose has to be increased. To come off you also need to reduce slowly as the withdrawl effects seem to mimic RLS.
Just everyone take care!
• in reply to
I would never tell anyone not to try any of the dopamine meds. The problem comes from the doctor treating the patient and not keeping up with the latest information. If you take a dopamine med and keep to a low dose then problems shouldnt arise or if they do, the getting of a low dose of a DA will be much easier than a high one. There is no proof that i know of that Pregabalin also causes augmentation.
Interesting theory about pregabalin Alison. I read a study in New England Journal of medicine comparing pregabalin with mirapex and it concluded pregabalin was more effective than mirapex but there were cases of augmentation with pregabalin as well. I mentioned it on this site a while back but the general view was that it doesn't cause augmentation. However, it took several years to discover that the DA meds caused augmentation so maybe pregabalin is a time bomb waiting to happen. I really hope not as I take it and do not ever want to experience augmentation again. EVER.
Thanks for your reply. I doubt very much it will result in the same augmentation as eg. Mirapex and hopefully folk will realise what is happening and not just put up the dose non stop. I've read reports that it can cause augmentation too and that was after researching when I wondered if it had and before I realised that eg Mirapex does. I expect I've taken pregabalin for RLS much longer than many others as I discovered the effect by chance long before it was recommended, probably for more than 10years.
I'd had moderate RLS for some time, runs in the family. Then developed peripheral neuropathy which was originally painful so was prescribed pregabalin at night, only 50mg & discovered this miracle RLS cure! I called the medical info dept of the drug company which I had access to as a Dr & asked if they were aware of this. I was told they had had other info of the same & were doing trials now. I managed to keep having it prescribed off licence but the RLS effect gradually wore off & I had to keep increasing the dose. At 150 mg when I had other side effects I decided not to increase further.
Of course RLS can get worse over time but it is miles worse now, lasts till 7 or 8 am, starts earlier in the evening & without pregabalin & now often with, it will wake me every 30-60 mins till say 4 or 5 am when I might manage a couple of hours sleep at a stretch. I also now get it in my arms & shoulders sometimes.
I would just say take care & especially if the effect starts wearing off. I do genuinely think it's the result of the pregabalin & it causes restlessness when the dose is reduced so is hard to come off too.
Just raising awareness. I don't think I'm scare mongering. I would never do that. We are all desperate for something which works and is safe
• in reply to
I went and googled it and found the study Jools and i must say it looks like it can cause augmentation. but the chance of it happening by what they are saying is sooo low, i would think you would be very unlucky for it the happen to you. Tramadol can also cause augmentation, but that is rare too.
You said you developed neuropathy?? And that was after having had RLS for some time? I have a suspicion that I developed PN a couple weeks ago, wasn't sure so didn't want to say anything, but reading this was an "ah ha!" moment for me. In your opinion, do you think I should get re-tested for PN (tested negative for it before the diagnosis of RLS was made)? My RLS started with the textbook symptoms, but a couple weeks ago I started getting a pins-and-needles and an itchiness-under-the-skin feeling in both the arms and legs. This is a neuropathy, right? Is the line of treatment the same for PN as it is for RLS?
I have written before about what I have found that works for me i think it is a miracle drug It is cannabis oil it's derived from maraguana you get it on internet been taking it about 2monthd don't have to take every day
I am absolutely no expert and am still casting round for answers.
The one I am most hopeful about is taking this special preparation of Iron every 2nd day to try to raise ferritin to at least 100 which is apparently recommended by the RLS research people at John Hopkins in the US.
I took 300mg of pregabalin and 30mg MorphineSR daily for my painful primary RLS for many years
I took Ropinerole for a while but the side effects were intolerable so had to stop.
I slowly weaned myself off morphine in order to start taking a normal dose of LDN 4.5mgs per day.
I can tell you that coming off pregabalin was far worse than coming off morphine! The withdrawal symptoms went on for weeks and were really unpleasant!
That said, I am now on a daily dose of LDN 4.5mgs.
I no longer have the terrible urge to move as soon as I sit or lie down from 5pm onwards and through the night. The pain no longer builds up in my legs until only moving will remove it for a moment.
LDN has removed RLS from my life as well as polymyalgia.
It took a couple of months to start working but slowly but surely it reduced the dreadful feelings until one day I noticed that I hadn't fidgeted all evening long.
I have since only had one fleeting moment when the feeling came back....it was almost like a neurological flash back. The pain came....and I held my breath, thinking "Oh my God, oh my God" and then it went away. It was as quick as that and the strangest thing...as I say, a "neurological flashback". Nothing since then.
LDN has stopped my RLS in it's tracks. It has improved my mood and also stopped the pain all over my body.
It costs me £20 per month on a private prescription from Dickson's Pharmacy online.
Thanks for that info. I read once that pregabalin withdrawal can cause restlessness even without preexisting RLS. There is so much no one tells you or no one knows. By LDN do you mean low dose naltrexone? I so much want my life back too but am now so scared of all side effects of everything and all the unknowns to follow. Do you live in the U.K. or US or somewhere else? I am in the UK
I have RLS have been taking mirapax for years didn't like side affects so been reading about CBD Oil it is cannabis oil derived from maraguana.Have been using it for about 2 months it is a miracle drug you get it from the internet I'm only taking it every other day works great
And i would just like to say, it isnt a cure for RLS, its a treatment. If your nan wasnt taking that pill her RLS would be back. A cure is when RLS never ever comes back.
Hi RLS21, your poor Nan and poor you having to watch her suffer. What a great grandchild you are. I suspect your Nan has more than one thing going on, RLS and something else too.
Were you able to film any of her spasms so you can show it to her Neurologist when you next go? If not and it happens again I would try to do that on your phone it would be helpful to the neurologist if he /she could actually see what is happening.
It sounds like your Nan is augmenting on the Pramipexole and Ropinerole will be just as bad. Believe me I took it and it was hell when it was happening. I think that was what Pippins2 was getting at when she asked if you Nan was taking any Dopamine Agonists. Unfortunately many neurologists are not aware of it and just keep increasing the dose of the offending drug . It seems to me most sufferers that take DA's end up augmenting eventually. sometimes they work well for many years before it happens like Ropinerol did for me and sometimes it happens after just a few months. The lower the dose of the DA you take the less likely are to augment but this can happen even on very low doses. I was on a low dose and that may be why I had 15 good years. If you augment on 1 DA then it is not advised you move onto another.
There is a great deal of information on this site about augmentation. but this link is to an article written by the worlds leading expert on RLS . Print it off and show it to your Nan's Neurologist as he or she is obviously not aware of it if he/she keeps upping her dose. sleepreviewmag.com/2015/02/...
Madlegs1 was not trying to say your Nan does not have RLS but that on this occasion and maybe on others too something else was going on as well as the symptoms you described are not common in RLS alone . Lots of people on here that have RLS also have other problems that effect their legs and sometimes their arms too. Your Nan may also have some inflammation somewhere that is causing her spasms and that may be why the Diclofenac was helpful.
Lot's of people are not able to take NSAIDs as they can interact with other drugs and can cause stomach problems which may be why the DR did not want to give any more to your Nan. My mum is not able to take them as she has had gastric reflux. If this is not the case I am sure your Nan's GP would prescribe them. If not try Ibuprofen like Madlegs 1 suggested. it is a similar drug .
I agree if the Diclofenac is helping your Nan and it won't harm her to take it I would try to get her GP to prescribe it. If I were in her shoes I would do the same. I took it once for tennis elbow but had to come off it as it gave me stomach problems.
Please get your Nan to read up on augmentation it really does sound like she has it and the sooner she gets off The DAs the better.
I hope she gets the help she needs . Good Luck.
I'm going to weigh in here and add a +1 on the augmentation, It is ferocious and your nan is on too high of dopamine agonists and I will bet my wife and kids she is augmenting.
When my RLS is at its worst I am in the same boat as your nan - flailing uncontrollably to try and ease the tension/pain in my torso and arms until I am thoroughly exhausted and pass out for a few minutes relief before it starts again. It is desperate and I have lost count on the nights where I seriously considered killing myself as a belly full of Tramadol, Oxycontin and a lung full of cannabis won't touch it.
My advice is to get your nan off the DA ASAP. She needs to come off slowly although I'd drop at least 1mg immediately. If the Diclofenac works, (although as has been pointed out to you it doesn't work for RLS - I've been on Diclofenac and still had bad RLS), it works and I would insist she gets it from her GP or change GP OR where there is a will there is a way:
I can't see why her GP would prescribe it if it brings relief but it can be got if needed other ways.
Finally RLS21 Madlegs1 was not being hostile, he is a gem packed full of great knowledge and has helped many here, (although his jokes aren't as good a mine ), and I can assure you he is a great ally in the war on RLS. TBH those spasms are not common and even though I have them and recognise them as part of RLS there is a part of me thinks it is something else as it is so much more violent and severe than the RLS in the legs. I urge you not to take advice and concern on here as attack, I've tried to help others here only to be on the end of a verbal assault, (well typed assault) and when I ask the person to highlight the 'nasty' post they go dark and never reply, Madlegs1 deserves much better than that.
Take care, hope your nan gets sorted soon and the Diclofenac continues to work.
Sounds nothing like RLS which i've suffered with on and off for years. Never once had any pain whatsoever from RLS except maybe once when I kicked the wall trying to make it stop. Sounds more like advanced Lyme's disease or Ankylosing Spondylitis.
Diclofenac never did anything for my RLS, Codeine helps far more. Since Diclo is an anti inflammatory like ibuprofen or aspirin it suggests this reduced inflammation from whatever is causing this.
Elisse, Pippins, Raffs & Madlegs are all absolutely right. Your Nan has been going through severe Augmentation from the Ropinirole. My husband wanted to take me to A&E when I was going through it but I knew the doctors wouldn't have a clue how to deal with it. I was right- as you have discovered most doctors AND neurologists haven't got a clue how to diagnose and treat augmentation.
The only thing your Nan can do now is slowly get off the poison ( It's really, really difficult) by reducing the dose and taking tramadol/ oxycontin while doing so.
She will go through those all over body spasms you saw in Hospital BUT she will eventually get to a stage where the RLS settles down to what it was like before she started taking ropinirole.
That's when gabapentin or pregabalin will start to help.
You also need to get her bloods done to check serum ferritin which must be 100 and not the low levels regarded as normal for others.
I'm so sorry she's had to go through this but Doctors know NOTHING about how this drug causes all over body spasms once Augmentation kicks in.
Do what Pippins & Elisse suggest and read up on Augmentation.Have a look at recent posts by Nick-the Turk who went through it months ago, came off a similar drug, and is now getting rest and sleep.
Definitely sounds like Augmentation. The more higher the dose the worse it gets and comes on earlier and earlier in the day and to other parts of the body with PLMD increasing too. Hope a change of meds will help. Good luck. X
Can i just start of with saying a huge thank you to everyone for all the information and advice given to me.
I have taken all advice on board and feel alot better within myself on moving forward to get Nan back to her winning ways.
I had nowhere to turn yesterday and was so worried about Nan coming out of hospital and having to see her go through the hell she had been going through night after night and when sitting with her in hospital when the consultant came to do his rounds seeing her legs twitching and him saying "no" to the only thing that had given her any sleep and calmed the episodes down well it just killed me inside and made me feel that I was letting her down.
God knows what made me think of writing on a forum, but something did and I now have a plan moving forward.
Nan had only slight twitching for about half hour last night and has been on her feet all day doing everything in the house , like you would not believe.
I had to go up to hospital this afternoon to pick up her discharge letter , which they have totally changed to suit them and put everthing onto the neurologist.
And actually given me not just the emergency 1 oral diclofenic but a full box.
Also given me not 1mg tablets of ropinorol but 2mg one now.
They have not got a clue!
Nan is going to cut down the dosage of ropinorol this evening and has taken codiene instead of the gaberpentin.
Forgive my short replies yesterday to Madlegs etc I was just so stressed out...
We now it's going to be a long road you recovery but at least now we can see some light.
I didn't mention yesterday that Nan has also had three botched knee replacements on her left knee and over the past couple of years and had her fourth knee replacement in her right knee last year.
Just going down to help her upstairs now and let's see how she gets on tonight.
How lovely that your Nan has you. Yep- Doctors are feckin clueless. The Codeine will help as your Nan reduces the ropinirole but if she needs a more effective way to stop the spasms definitely ask GP for tramadol. Print off all the info on augmentation to take in with you as the GP won't have a clue either!
Really hope your Nan ( and you) get some restful sleep.
The reduced ropinorol worked last night with the codeine...it's just the base of her back that's giving her the problems now...which now I know probably started off more of the severe spasms
Let's hope it continues like that. As Lotte says, don't just stop the gabapentin. That has to be reduced slowly. Best to stay on gaba pentin as it will help the RLS once your Nan is off ropinirole. Just add the codeine and diclofenic as and when needed. Keep in touch so we know how she is coping with withdrawal.
Hi RLS21, Well done for you. And keep up the good work.
I am a bit confused, though.
Why do you REPLACE the gabapentin by codeine? Why not ADD it?
You said before codeine (and tramadol) didn't work. And you said begore that your nan is on high doses of gabapentin and ropinirol. Ropinirol is associated with augmentation, that is why you want to get rid of it. ONLY THEN it will become clear whether the gabapentin will suffice to control the RLS. It may take some time (read: weeks to even months) to get there. Joolsg has explained that very clearly yesterday.
Also if you want to stop the gabapentin, such large doses of gabapentin also need to be titrated down, rather than stopped full stop. Like the ropinirol. But you may mot want to stop the gabapentin right now.
Maybe you meant diclofenac instead of codeine. Maybe you were tired too? I don't know. Please read through the replies carefully and slowly to get it all clearly in your mind; it IS a lot to digest if you are new to the issues and names etc.
And don't hesitate to ask again and again. We are here to offer help to get you on the right track for your nan.
Hi RLS21. I've been through what you described for your Nan. I've had RLS for at least 55 years. Brought on by the pregnancy with my oldest child. 6 years ago I had back surgery for 3 herniated discs. In recovery I was sedated but my legs and body kept trashing about. One of my daughters captured the episode on video to show my neurosurgeon. He replied that he really couldn't help with the restless leg problem. A week later I contracted a spinal cord abscess - most pain of my life. After 15 days in the hospital I was told there was possible permanent damage to my spinal cord From that day to this I have felt like a experiment pushing a walker. Tried everything but things really got worse when my primary doc began increasing my dosage of Pramipexole. From thus group of fellow RLS sufferers I learned about RLS Augmentation on Pramipexole and for the past few weeks I've been able to cut out one daily dose I have RLS day and night. With relief here and there. Now the past few days my left ankle swelled with lots of pain - not RLS related but doc gave me anti-inflammatory meds and yes my RLS was better and I slept really well. I don't think they are related but seem to go hand-in-hand I don't know why. but it sure makes you wonder I am glad your Nan is better and has your love and care. You might pass on to her to find a way to relax I find meditation in painting it seems to relieve stress and gives me inner peace. Maybe your Nan has a creative hobby she loves Encourage her in this way. It helps Sorry for such a long narrative. God bless and hugs
In carrying on with what Crazyleggs wrote about mediation:
Has your nan tried breathing exercises? Has she (or you) ever heard of the 4-7-8 breathing technique? This link describes how to do it:
Has she also heard about mindfulness? This is a technique wherein you focus on one thing and one thing only. Examples are specific items, food, your breathing, the and the here and now. I was part of a 12-week out-patient ccognitive behavioral therapy (CBT) class in which we were taught how to 'be mindful'. In order to teach us this, each class member took a week and brought in something for us to focus on for a couple minutes at the beginning of each session. I remember bringing in an object and the teacher instructed me to place it in the center of the table and we all had to focus on every aspect of it (color, texture, touch, smell, etc.). Someone else brought in a guided mediation exercise. Someone else brought in raisins, gave us each one and (with the help of guided mediation) told us to draw our attention to its smell before we put it in our mouth, then the taste and texture of it as we put it in our mouth, chewed, and then being mindful of the journey it took from mouth, down gullet, etc.
You can also put 'RLS exercises' into google and click on the first link (by Healthline). Halfway down the page will be 3 exercises: calf stretch, front thigh, and hip flexor.
I just started going to a psychomotor pysiotherapist and am writing about my experiences. The post is called "relaxation techniques'. I describe what this kind of pysiotherapist does and will post her suggestions as we go along. My next appointment with her is on Tuesday.
The problem with Diclofenic is it rots the gut, that is what Dr once told me really serious if bleeding starts. Please try Magnesium, it really helps spasms and is Natural.
So true, and the bleeding is even worse if you are allergic to Voltarol, as I am! The other problem with Diclofenic Sodium is that no one tells you, until too late that the two are the same drug!
To me this sounds something more than RLS and I think your Nan should be referred to a neurologist.
If I'm not mistaken Diclofenic has been downgraded and now can be bought directly over the counter, please check with your chemist. I believe there are diclofenic sprays and patches to but please check I'm not absoloutly sure.
Hi All after reading this post about Declophenic I gave it a go as My partner was on them years ago. They phased him off them apparently the cause Heart problems. Anyway they worked
I still have a few left so will see how they go and report back.
I found this site because I was searching for the opposite. I have had RLS for years. Through exercise and diet, I have been able to control it well. For the rare 1-2 times a month it is a problem, 1/2 of a Norco 10 at bedtime does the trick to help me go to sleep.
Well, as you know, suddenly prescription pain killers like Norco (from a doctor) are bad, but marijuana (from some stoner with earlobe expanders and neck tattoos) is good. Unfortunately, I have a job that I would immediately lose if I did ANY marijuana. So my doctor prescribed diclofenac (aka Voltaren). I have been taking it for five days and OMG my RLS has flared up like never before.
I really don't think the episode you described was RLS. I'm glad you found something that works, but for me, diclofenac makes my RLS much worse.
YES. .I found diclofenac (voltarol) works for me like a dream. It is the ONLY answer....but my doc was reluctant to prescribe it as it will increase my proneness to stroke. However, RLS so bad the risk is worth it.
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