I am really starting to struggle guys and need some advice. My doctors, as do many, don’t seem to understand RLS or the medication. I have been on Rhopinerol for about 2 years. My dosage has been up and down, but pretty much as per my doctors instruction ‘change your dosage as you see fit for it to work’. However now i seem to be hitting augmentation. Getting worse, any time of day now, not just nights. Also very tired all day, but can’t sleep as get woken by my legs within about 20 minutes, and can’t take my medication that makes me sleepy during the day. Now getting the same irritations in my arms, and having trouble getting to sleep no matter how tired I am. What do I do? How can I get my doctor to either deal with it, or tell them the possible treatments that 8 have been told about elsewhere. (See a neurologist and get Rhopinerol and onto something more effective) I normally get accused of self diagnosing rather than someone who investigates their condition.
My Doctor really doesn’t seem to unde... - Restless Legs Syn...
My Doctor really doesn’t seem to understand
Sorry you're having this difficulty.
It does sound as if you're suffering augmentation and as you seem to realise, its best to reduce and stop the ropinirole.
You don't need your doctors understanding to do that, you can just do it.
HOWEVER, it would be a good idea to get your doctor to prescribe an alternative before starting to reduce the ropinirole and possibly something to help with withdrawal symptoms.
You can, of course, just simply request a change of medication. There's no real justification for refusing this if the change you're asking for is a valid one.
In which case it may help for you to provide your doctor with "authoritative" information about dopamine agonists and augmentation, how to deal with augmentation and what alternatives there are for a dopamine agonist. This hopefully will demonstrate that you are not just simply making this up.
You can download this information, print it out, and take it when you see your doctor, or send it to the doctor in the post or simply provide them with the links I'm going to give you below.
The alternative first line medication for RLS to a dopamine agonist is an alpha 2 delta ligand, either gabapentin or pregabalin.
You can start taking this a few weeks before reducing he ropinirole as it takes a while to work, then s l o w l y reduce the dose of the DA. More detail of this is available if you need it. First you need to get your doctor on board.
If you cannot get your doctor's cooperation, then I suggest you see another doctor.
Here's a link to an article on augmentation
rls-uk.org/augmentation-reb...
Another link on augmentation. Dr Buckfuhrer is an internationally recognised RLS expert.
sleepreviewmag.com/uncatego...
Here's a link to an article written by a Professor of neurology and an RLS expert. Note the sections on augmentation and the use of alpha 2 delta ligands.
uptodate.com/contents/treat...
IF you live in the UK then any NHS doctor must take note of the guidance issued by the National Institute for Health and Care Excellence (NICE). The guidance is evidence based and your doctor should not be able to justify ignoring it.
Here's a link to the NICE guidelines for RLS, note the section entitled "What drugs should I consider - - - " Which mention both augmentation and the alpha 2 delta ligands.
cks.nice.org.uk/restless-le...
I'm sorry, this last link is only accessible from within the UK.
I am not suggesting this, it is your choice, but I will say - even if any doctor should refuse to prescribe you gabapentin or pregabalin, you may still be better off reducing and stopping the ropinirole than staying on it. Your sleep medication may help. Since the ropinirole is making your RLS and insomnia worse i.e. augmentation, then reducing it should improve your symptoms, once the withdrawal effects have faded. This won't be perfect, but it would be better than continuing as you are now.
I hope this helps
Manerva, thank you for your advice, it is helpful, and now I believe I have something to go to my GP with. I am in the UK as well so the last hopefully will be very helpful. Now obviously I will ask them, but from reading the links that you sent me, I have a few more questions. Mainly for advice and opinion from someone who does seem to know what they are talking about.
Firstly, when I originally advised my GP I thought I was suffering with RLS from my symptoms and research I had already done. He did not really do any sort of proper referral, no test of iron levels, just put me on the Rhopinerol. I have never had any follow up, apart from when I have been back to say wearing off and told to increase dosage.
Secondly, I have for other reasons had a few blood tests done since being prescribed, but no one has told me I have low iron levels.
Thirdly, I do take Citalopram 20mg for depression. Now as a rule this does seem to work for what it is for, but I am now concerned that after a year of that as well, this is partly what is having an effect on Rhopinerol.
Lastly, and probably not linked, maybe even a little paranoia. However, due my depression, which I have suffered with on and off for many many years but only sought treatment for in the last year. And the fact of my apparent, yet mild compulsion to spend money when I have it. ( If I am in possession of a large amount of disposable money, I can’t seem to save it, I feel great and have to spend it, I have caused debt in the past because of it. Or is it just being bad with money) Anyway, I am wondering if the current medications are cancelling each other out? Or for a while questioned myself, do I have a very mild form of Bipolar, that will need to be taken into consideration when dealing with my RLS. Due to getting treatments and possible medications right. And how do I go to my GP with a possible self diagnosed Bipolar. They haven’t followed me up on my Depression or Citaolpram by the way.
I know it’s a lot to ask and probably a very different question altogether. Just thinking of everything compared to what you have kindly advised me to read.
Many thanks
From your description it does sound as if you DO have RLS and unless you think a neurologist will be any better than your GP, then it' may be of no great advantage to have a referral.
The NICE guidelines also say when the GP should refer.
If you had no blood test at all, then ask for one. The test you need is for serum iron, ferritin and transferrin. The normal haemoglobin test for iron deficiency anaemia is of no real value.
You may read that stored iron levels, as indicated by ferritin is important in RLS. If your ferritin level is below 100ug/mL you may benefit from iron supplementation. Being told it's "normal" is not good enough, when you. have it tested you need to know the number.
My GPs never followed me up. I manage my RLS better than they would anyway, but if I do have a specific issue, I make an appointment.
Citalopram, an SSRI makes RLS worse! Really, you shouldn't have been taking it that long anyway. If you're still having problems then depending on what's underlying your depression/anxiety you would either benefit from counselling or your doctor could refer you to mental health services!
Be warned antidepressants should not be stopped suddenly. Even if you stopped the Citalopram, it could take a while for it to cease affecting your RLS.
You will also still continue to have augmentation with the ropinirole.
Your mild compulsion to spend money, if it's occurred since you started taking ropinirole, may be due to the development of an Impulse Control Disorder, (ICD), another consequence of taking a dopamine agonist. ICDs usually take the form.of compulsive gambling, excessive eating, compulsive shopping and others.
Your doctor isn't really doing their best for you. Insist on a mental health referral if you want a bipolar diagnosis. Antidepressants aren't really appropriate for bipolar.
Also you could get on touch with the bipolar association for more info.
I hope this covers everything.
See my previous reply may help
That is sad. Sounds like you need to try for a muscle relaxant. Flexeril worked great for me until I got “too old” for it.
Sadly llaws76 is apparently suffering from augmentation caused by taking ropinirole. If you're not familiar with this it is ao condition in which a dopamine agonist, such as ropinirole, starts to make RLS worse instead of better.
I'm sorry if Flexeril worked for you, but now can't take it. However in the case of augmentation the only effective treatment is to stop taking the dopamine agonist.
Since the ropinirole is causing llaws76's problem it's better to remove the cause than to try and counteract it with yet another medicine, which probably wouldn't work anyway.
This by way of explanation.
Do you take snything else now for your RLS? Is it working OK?
You have written an in depth article that I would need notes nowadays to write such scientific data. Years ago, but not at this stage of MS brain damage or rather “neurodegenerative disease”🤪. Yes I understand augmentation. The sleep clinic attended realized I needed Xanax an hour before I took Lunesta in order for the Lunesta to be effective. He said it was the parachute for the jet to slow down my brain. The brakes alone weren’t sufficient or something like that. I take a low dose of oxcarbazepine and it augments the generic Xanax and Lunesta . Only when I accidentally stretch my legs in bed does the RLS kick in, then I have to get up and walk around the house for awhile, moaning groaning complaining even crying in anger sometimes telling my long gone mother “no this is not growing pains👹👹”. Neurologist prescribed 300 of that oxcarb but I only take 150 cause it increases brain fog (and the sun seldom shines through the sun now). I do believe a lifetime of lack of quality sleep contributed to my status is MS and other comorbidities. Nothing like RLS and Charlie horse to disturb what sleep wherein a person can finally get lost.
Oh my. I wrote a long reply and forgot to say that the oxcarbazepine is for the RLS. Brain fog and tangential brain.
Btw, I tried gabapentin and pregabablin, lost control of bladder on both of them. Also, allergic to every DMT I was given. Docs call me “rare unusual case” 🤪🤪🤪🤪 lucky something works. Became allergic to flexeril due to age, and was only muscle relaxant strong enough to help. Thanks for listening. Tired of it all. Stopped going to neurologists. Primary care takes care of me. After 56 years of MS, about 63 of RLS, etc etc etc I give up on specialists.
You can be your own specialist. I'm sure you've learned a lot
I'm not sure what a DMT is.
Sorry to hear of your medication failures and the apparent cocktail of meds you have to take.
If it's not been suggested to you before, have you tried cannabis. I's known to help with MS and sleep. Anecdotally, at least, there's some suggestion it may work for RLS.
I don't mean CBD oil.
A serious question, no pun intended, are you a quaker?
No not a Quaker why would you ask? What did I say? I am a seriously spiritual Christian, though, with some strong beliefs. You must not have MS is you don’t know about DMTs - disease modifying therapy. I thought this sight was for Multiple Sclerosis patients. Yes, I have tried cannabis in mistbforms via friends and family. Direct inhalation is killer to my throat and lungs since I have major scar tissue from numerous bouts with pneumonia and also chronic bronchitis and take daily breathhing treatments. That stuff burns my throat even when breathed thru ice. Edibles are very unstable with my hit and miss metabolizing due to my mussing Alleles or whatever. Sometimes I become couch locked sometimes bad trip, so a bit dangerous for me. Same with CBD with THC. Is that TMI for public forum? I am told my boundaries are gone with my MS lesions. If it’s too much perhaps the ambassador will have redact some words. I think I’m in a brain fog with weather going from 80 down to 25 in 4 days. And, yes, I tried, Kratom and the psych mushrooms and just about anything else promising sleep and no pain. 🤪🤪🤪
Hi, Sorry, your username agape - pilgrim does have spiritual connotations and for some reason I associate agape with quakers. I hope you're not insuted, I admire quakers.
This site is NOT for people with MS, it's for people with RLS, i'e. restless legs syndrome. Members of this site have RLS, most do NOT have MS, I don't, hence unfamiliar with DMT.
Now I'm mystified by "TMI".
I have my own personal fog!
No I’m the one in brain fog. Since part of my brain disappeared (according to MRIs) by lesions of MS I am all over the place. I see the icon at top of screen this is RLS but since I get emails from HealthUnlocked leading to this site I get confused. Health Unlocked is also for MS. Evidently HealthUnlocked is an umbrella for several comorbidities. I do have RLS since a child. Agapepilgrim was adopted for my first email account many moons ago. When my brother told me about email, I had just finished a book titled Peacepilgrim about a woman who walked across America in the 60s with just a small pack, talking about peace. I though about my goal, desire, vision and it is Gods unconditional love. I had studied the 4 loves explained by the Greek words for love, so decided I am on a pilgrimage to fill my soul with Agape. Still have some selfishness in me, and with losing parts of my brain it is more difficult, but I want to share my experiences if I can help alleviate anyone’s pain. I have always admired the patience of the Quakers. Oh to have that patience “let patience have her perfect work “
Btw, (by the way) again my “tangential brain” (diagnosed by neurologist means I can’t stay on point in conversation, I go off on other subjects), TMI means too much information. Used in business offices a lot when giving personal info in business settings 😀. Somehow someone must have asked a question about RLS and I jumped in and gave my experience. I use abbreviations when possible and let words pop up to type as little as possible because I get pains in crook of elbow in right arm and spasms in my arm similar to RLS in legs. I keep prescriptions strength lidocaine patches on arm. Leg too when I remember. I’m forgetful. I will try to back out gracefully and stick with one forum. Goodbye. Agape to you.
Agape to you too.
Hi Manerva,
Sorry to interrupt someone else’s feed (again!) but I don’t know how else to ask directed questions.
I have 2 questions; both which may not be that easy to answer.
1. I am completely fascinated by the phenomenon ‘restless legs syndrome’. I’d like to think I’ve always been fortunate enough to be healthy throughout life.
In the past I have had ‘flinches’ of RLS which would be very mild and last a few nights in a row and than disappear for years. The first time it started haunting me was during my first pregnancy 2 years ago. I remember the symptoms to be bad - but nothing like I am going through at the moment. I am currently pregnant with my second child (39 weeks thank goodness). I am not asking for advice (as you’ve mentioned the gender disparity before). I had that eery feeling in the beginning of pregnancy but it went away until about 28 weeks.
I’d like to classify my life as ‘a living hell’ since 28 weeks. I have never, ever in my life been struck by something so debilitating. I have restless legs for nearly 24/7 (whilst at rest). It’s main focus is in my left leg/thigh but to be honest, every other night it’s in my left flank, left arm and face as well. There has been 1 night of some spontaneous relief but otherwise it’s daily.
I’ve had some pretty dark thoughts and the nights are long and lonely. Some nights I don’t get any sleep - some nights I get up to 5 hours fragmented sleep. It is an ACTUAL living nightmare. I saw a neurologist this pregnancy who was reluctant to start anything but would support the odd codeine to break the cycle of deep fatigue (please no judgement of taking opioids in pregnancy - the accumulative lack of sleep is of a lot more harm physically and mentally). This long introduction leads me to the following question:
It is thought that the prevalence of RLS is actually quite high (up to 10% am I right?). Well there is no way that 10% of the gen population lives the way I am living now (currently awake in bed following my second shower with frozen peas strapped to my legs - taking 500000 vitamin supplements etc etc...).
What is the natural course of this disease? How many people are struck with this severe type of debilitating horror disease? Will it go away (if this was not pregnancy related - I know my case is different). Will it get worse (gosh, CAN it get worse?). I am asking as if this was not pregnancy related.
2. This question may be easier: Gabapentin vs pregabalin? In your opinion - which one may be more efficient / tolerable?
Sorry for the tangient. I am just in awe as to how someone who has largely been very healthy in life has been struck with something so deeply depressing and debilitating.
Thanks,
T
No criticism intended, but thinking yourself "unhealthy" because you have RLS doesn't help.
It's true the condition is causing health problems and it's not perhaps a good anology, but when you have a cold, do you think of youself as an unhealthy person?
It's true, I've never been pregnant, but I am aware that RLS can occur during pregnancy. I don't think the theory on why this happens is 100%_ clear cut.
Some women, I believe, experience RLS whilst they're pregnant, then never again. In which case I'd say this is "secondary" RLS. It's reversible.
You may have "idiopathic" RLS which couldn't have been diagnosed during pregnancy. This is the inborn innate tendency to suffer RLS.
This may not show itself or may stay mild, until something "triggers" it. E.g. pregnancy could be a trigger.
As well as changes in hormones during pregnancy, the embryo does require to get nutrients from you. One of these is iron. Not only do we have iron circulating in our blood, we have iron stored as well. When the embryo takes iron from your blood, your body will replace it with iron taken from storage.
I believe you have a test for anaemia during pregnancy. Being anaemic (iron deficiency anaemia) can cause RLS. However, low stored iron can occur even if there is no anaemia.
Low stored iron is a significant factor in RLS and is the first thing a doctor should think of.
A normal "anaemia" test won't detect tbis. The test needed is a a ferritin test. Normally any level of ferritin above 15ug/mL is considered OK, but for someone with idiopatbic RLS, it is better if it is above 100ug/mL.
Furthermore, whilst low blood iron might correct itself fairly quickly after birth on a normal diet, stored iron can a take a lot longer to replace.
I presume your doctor may have prescribed vit B12/folate or even oral iron. Oral iron may take a long time to raise the ferritin level.
Idiopathic RLS dies also tend to get worse as you do get older. There may also be something be some other "trigger" making your RLS worse at this time.
There's quite a list of possible triggers including foods, medications or other health conditions. Your worsening RLS might be due to something that's changed in relation to these.
Stress is also a trigger and I'm sure you're experiencing this at this time.
I hope this helps
Thanks for your comments I’ve had good results with extra iron but dose take a while to get into your system so don’t expect over night
PS Gabapentin or pregabalin.
I'm not sure either is any better than the other.
Pregabalin does have some advantages over gabapentin.
These are
It is more potent, so you don't have to take as much, this might help reduce side effects, kf a more potent dose is needed.
90% of pregabalin is absorbed no matter what dose you take. Doubling the dose you take, doubles the amount you absorb. This is not so with gabapentin. At low doses the max you absorb is 80%, the higher the dose, the less the %age you absorb. Doubling the amount you take, does not double the amount you absorb.
Pregabalin disappears from the blood at a consistent rate, gabapentin is more variable.
Based on the principle that the less the dose you take of any medication the better, my thought is that someone should start taking thr less potent gabapentin (300mg starting dose) and then raise the dose until it becomes fully effective. If this is 900 to 1200mg then OK. However, if 1200mg is niot enough, then switch to pregabalin. I have read somewhere that increasing the dose of gabapentin above 1200mg makes little difference because of its inconsistent absorption properties.
Hi Manerva,
Thank you for your advice once again. Do you know if there is any evidence or knowledge on whether a hístory of taking SSRIs (citalopram) and a hístory of taking sedating antihistamines (promethazine) increases your risk of developing RLS at a LATER stage?
I previously used both at various stages in life (citalopram 10 years ago and promethazine about a year ago aiding me through shift work for a few days a month). At the time I was completely asymptomatic (eg: no restless legs) but can a past use of these meds make you develop RLS later? Do you know?
In a word, yes. Sedating antihistamines can trigger RLS although the effect is probably fairly immediate.
Promethazine is, if I tecall correctly one of a group of drugs from which chlorpromazine is derived. This was used as an antipsychotic drug, but it caused parkinsonic type symptoms as it reduces dopamine.
Sorry to jump in on your feed Tanja. I’m so sorry you’re having such a tough time. RLS is common in pregnancy and getting any relief and sleep is essential so do not feel bad about taking codeine.
I first developed RLS in the third trimester of my second pregnancy and it never went away. I was put on dopamine agonists and was on them for 15 years. Don’t touch them- latest view is that they permanently damage the dopamine receptors so even when you get off them, you’ll have severe RLS.
Hopefully you will find the RLS disappears once you’ve given birth but if it doesn’t, try the non med routes first. Try raising serum ferritin above 100( preferably above 300) and take magnesium citrate every night. Keep a food diary and note anything that makes it worse. Avoid anti depressants, anti histamines and sedating cough and cold meds.
I tried Gabapentin but had too many side effects. Pregabalin workef better. Everyone is different though.
I wish you a safe pregnancy and birth and congratulations.
Fingers crossed it goes away.
P.S There are quite a few people who have constant RLS and get no more than 1 hour’s rest a day. It’s rare but it does happen. It’s one of the reasons RLS has the highest suicide risk of all neurological diseases.
Please look at my reply s regarding lack of iron during pregnancy you body does so much more
As usual Manerva has given excellent advice.
I reduced ropinirole slowly by following advice on here and my GP was terrible. Refused to help and eventually I had to phone my MS neurologist who then wrote to GP telling her to give me tramadol and/or OxyContin to get me off Ropinirole and through withdrawal.
Reduce by 0.25mg every 10 days and you may find the RLS improves a little ( it did for me) until the last 0.5-1mg.
Requip / Ropinirole is evil and you need off of it ASAP. You are definitely in augmentation and it will only get worse. The last 6 months have been pyre hell for me and it took me 7 different doctors that would listen and help me, but i finally found one that prescribed me an opioid and Gabapentin which made a world of deference and i could start weaning off the requip. I was up to taking 5mg a day, but i am finally completely off now for 6 days and i am starting to sleep all night again. during Augmentation i was sleeping in the bathtub every night and having RLS in my whole body all day. I thought i was going to loss my mind. Something i did while i was searching for a Doc was to take a warm Epson Salt/Lavender/CBD oil bath every night, Take magnesium (CALM). I would also recommend taking Iron and Vitamin C, but you need to get your ferritin levels check! My iron level were fine, but my ferritin was 26 and needed to be above 100 and in some new cases i am hearing they would like it above 300. I am sorry you are going through this and it is a total crime that doctors are not more informed.
Hi. I have gone through exactly what you are going through. Three times I went 5 days without being able to fall asleep. All the same augmentation with requip. Honestly I was contemplating suicide. I made a call at 3am to a help line and wonderful person helped me past that point. Since then I agreed to try gabapentin again as it made me feel ill for a few days. So now I combine .25mg requip in the afternoons along with 15mg ms contin ( slow release morphine sulphate) usually gets me to suppertime feeling quite good and free from the heebies. Sometimes I have to do this twice between noon and supper. A couple of hours before bed I combine 1mg requip with 15mg ms contin and by bedtime I am tired . Then I take 300mg gabapentin with 1mg requip and 15 mg ms contin. This let's me sleep 2 to 3 hrs. Any time I wake up after that a dose of gabba and ms and I am back to sleep for another 2 to 3 hrs. So Now I sleep in 2 or 3 hr Shifts but J can function the next day normally. I am an arborist and climb trees as my business and career. This sounds like a lot but gave me my life back. It seems as though the morphine keeps the requip from augmenting and keeps it working as it is intended. I have wracked my brain all those sleepless hours to come with this combination of drugs. I am also now vegetarian and don't drink alcohol or smoke. This has all led to a pretty good life. Far from the nights I though about the best way to exit this life without hurting the ones that love me. This might not work for you and your doc might not be willing to try this regimen but it has saved my life. If my experience could help one person free themselves from thia terrible disease I would be elated. Cheers and don't give up. You can make peace with this evil entity .
Feel for same problem see my other replies take care
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