Top of the morning to you guys.I will give some context before asking my question.I started having moderate RLS sophomore year of college which was 3 years ago.I started taking pramipexole and i knew that it was a ticking bomb but thought that i will take the risk 8 deal with the consequences later.Right at the end of my college education I suffered augmentation and was put on oxycontin which allows me to live a close to normal life .I have been taking it for around a year and have 0 complaints but ever since starting it everyone has been so judgmental(except for my ma ,pa and my best friend).Everyone else thinks of me as a junky.Can't they understand that I have to take it because otherwise I'd be a complete wreck?I have tried explaining but everyone downplays RLS and thinks that i am a beach.Should I try to make them understand or should I stop caring?
Why is everyone judging me for taking... - Restless Legs Syn...
Restless Legs Syndrome
Not everybody who takes opiates is a junky. You need to do what makes your life livable. Sure - venture to explain your medication regimen to people, but save your breath with those whose minds are closed. My life with RLS is not livable right now. I would take anything if it allowed me some measure of a normal life.
Why is it not livable?What happened?
First there is the lack of sleep. But it seems that my RLS manifests itself in ways that go beyond just needing to move my legs. I can't regulate my body temperature. I feel immense amounts of anxiety and depression. And I also feel itchy as if I have allergies. Some of the symptoms are reminiscent of drug withdrawal.
Are you taking anything for it?
Ropinirole. But it always makes me sick to my stomach.
What dose are you taking?And on a scale of 1-10 how much does it relieve ypur symptoms?
I take between 1 and 5 mg as needed. Minimal to moderate effectiveness. But then the next day I'm sick to my stomach.
Welcome cjouelle. The ropinirole is very problematic - search this site for everything on augmentation and dopamine agonists.
Many of us here have had a dreadful time with dopamine agonists and have had to fight our way out of it.
Your life can be better. Learn everything you can.
I just joined this site today. So I probably have a lot to learn.
5 mg is way too much friendo.Have you tried combining it with another medicine like gabapentin?A woman on another forum who is very knowledgeable told me that often in moderate to severe cases people need more than 1 type of medicine to control the rls.2 medicines at lower doses combined are better than 1 at a high dose.Maybe look into that.
I rarely take 5mg. Usually 1 to 2mg. I am on gabapentin and also take tramadol (it is my husband's) from time to time. I haven't found tramadol to be effective at all. I have had my iron levels checked, and they are normal. I do take a supplement just in case. I was on opioids for many years for pain, and the dramatic worsening of my RLS symptoms coincided with my stopping taking them. There is no way in today's climate I could see a doctor prescribing opioids for RLS. Even if that's what's required.
One thing with my experience if I got acid problem my Rls is worse if I take any anti acid tablets it does give me relive.with acid my legs are very jumpy I can’t sit for even one minute
What you describe sounds like a problem exacerbated by medication - either you are augmenting or experiencing side effects of R in my opinion. It may be that taking different amounts of R at different times is freaking your dopamine mechanisms. Why not try gabapentin, opioids such as Tramadol, or Cannabis, which may not be legal where you are. Or Kratom. And get your iron levels checked. Good luck.
Thanks for your advice. I am on gabapentin and also take tramadol (it is my husband's) from time to time. I haven't found tramadol to be effective at all. I have had my iron levels checked, and they are normal. I do take a supplement just in case. I was on opioids (Percocet) for many years for pain, and the dramatic worsening of my RLS symptoms coincided with my stopping taking them. There is no way in today's climate (in the US) I could see a doctor prescribing opioids for RLS. Even if that's what's required.
Hi Asahd, welcome. You've done well so far. And it appears you have educated yourself. Well done. I am sad to learn that already at a such a young age your RLS is severe to te point that you need oxycontin. Do you have daily symptoms? In my early twenties, I had only symptoms occasionally, if nights were too long and I got overtired. The RLS only became severe and daily in my early 50s.
I hope your symptoms will die down again, at least for prolonged periods. I don't wish severe RLS on anyone at such a young age, even when it is well controlled with meds.
Your question could have been mine. I also take oxycontin, and it works well for my RLS symptoms. Although, unlike you, I suffer from side effects to the point that I am looking for a replacement medicine. When I mention oxycontin, people do not imply I am a junky, but their first reaction is to warn me for addiction. When I question them about it, even my pharmacologist daughter in law, it appears they assume too much and also don't really know the difference between dependence, tolerance and addition. My solution to this issue is simply not mention the name of the medicine I take. And I try to forgo mentioning RLS, calling it a neurological disorder instead. Of they want to know more, I explain by saying that it is essentially a disbalance between several neurotransmitters. Would that work for you too?
I assume you are in the US, and the pressure from the 'opioid crisis' in the media etc I assume is quite a bit stronger than here in The Netherlands. But still. People judge, based on a few slogans they have read in te papers or heard on the news. 'Sloganeering'. A few may be interested in the fact, most aren't. Thus, I would recommend to save your energy.
P.S. Are you familiar with tue Mayo Clinic paper by the IRLSSG on the use of opioids for RLS?
Hi LotteM.I do live in the USA.I have RLS about 4-5 days a week.I really jumped the gun a few years ago by starting with meds instead of trying iron therapy first because .I have been thinking of getting my ferritin tested and maybe getting an iron infusion if its appropriate.Even though the oxycontin is working well I'd still prefer to try and live without meds for as long as possible.About the opioid crisis. 50 thousand people dying of opioid overdose is no joke .I get that.But why have they made it so damn hard for people with certain types of chronic pain, rls and other conditions to get relief? I have never tried getting "high" from an opioid .Never needed to.The government needs to think of a better way to regulate that.Sadly i don't think Biden will do anything meaningful in that department. Anyway love and hugs from the US.
Thank you Asahd, and I agree wholeheartedly.
An excellent idea to look into the iron. Do you have the iron paper with the recommendations? And do you have a dr who is knowledgeable and up to date, maybe one of the quality care centres of rls.org? I hope you'll benefit from the iron. And if not, it is worth looking into treating your RLS on an as-needed basis. Maybe the shorter-acting oxycodon would suit you. Hard to tell in advance, as we're all different. But at least the 'normal' oxy works faster than the oxycontin, the slow release version. And maybe, if it is legal in your state, you may want to research kratom. Do research it first, as medical doctors won't know much or anything about it, but I find it very helpful. Effective and fast acting.
Keep in touch!
Could I ask which side effects you are getting please? Just yesterday my sleep clinic have agreed to put me on this due my issues with Gabapentin/Pregabalin. Will you go onto a different opiate or one of the other two groups of drugs?
Hi Sampsie, I am terribly exhausted all the time. Not that I can't do anything, but everything feels 'heavy', and requires an enormous effort and willpower. Getting anything done feels like a fight, over and over again. I thought it was a carry-over effect from the evening dose, but additional daytime dosing doesn't make much if a difference, maybe even made it worse. I heard of several other who suffered similar side effects.
But. There is always a but. This is not a too common side effect, and we're all different. Also, the oxy is very effective for quelling my symptoms. If you get the oxycontin (or Targinact maybe?) you'll have to wait and see. I wouldn't forgo it just because such side effects might happen. Just make sure you get an evaluation consult a while after you start taking it. That is, if you get it prescribed.
Thanks Lotte. I really hope you find something else that is more suitable for you. What will you go for?
I'll give it a go. I already have concerns re stomach issues as when I take codeine I have stomach problems, mainly nausea and swelling. To be honest, I hope that I can get medical cannabis and that will have less side effects than all the other drugs I have tried but I am sure that comes with its own issues too. If I remember from the days I used to smoke it recreationally, I was very lethargic the next day and my short term memory was terrible. There's no magic bullet is there?!
Sorry to hear those close to you don't understand what it's like to have severe RLS.
It is a great shame generally, that people who haven't experienced it for themselves have no real insight.
Some of Lotte's ideas seem right, perhaps mention it as little as possible and definitely not the opiate.
I don't know why people should be so judgemental. I believe most of the deaths from opiate misuse in the US are due to fentanyl which was originally prescribed for pain and this is most often NOT your typical "junky".
You will not find much judgement here, Asahd.
I can only speak for issues here in the USA, but the government in their infinite overreaching (the nine scariest words in the English language: I'm from the government and I'm here to help - former US President Ronald Reagan) in not letting medical professionals do their job and their deliberate demonization of opiates, has created a climate of fear over use of opiates. People are so brainwashed that end-stage cancer patients will not take opiates for fear of "getting addicted". Doctors are afraid of having their medical licenses pulled.
My advice is not to bring it up except to my medical professionals and maybe immediate family. Even then, I have had pharmacy techs tell me that whoever is giving me these should not be prescribing opiates to me for this disorder. I always will come back with medical information supporting opiate use and notify their employers and state licensing board that they are practicing as a pharmacist without a license. I also do not advertise the fact that I am on opiates (except here) as I am afraid of the criminal element breaking into my house. The government had dried up the the use of opiates so much that even legitimate users are having trouble getting it.
Remember you have a horrid disease and have a right to have it managed appropriately and rationally by any means necessary.
Just try to stop caring what anyone says. No one has any idea how awful & life affecting this dreadful condition is. If I was brave enough & could guarantee it wouldn’t adverse it affect me I’d ask for it too! I am very plessed to know it helps.
The one great thing about getting old is that you no longer give a **** what anyone thinks.
You’re still young so I understand why it’s still problematic - especially where you live.
As Lotte suggests, explain that you have a chronic neurological disease for which low dose opioids is now considered best treatment in the USA amongst the top experts ( Drs Buchfuhrer, Winkleman, Early, Allen). There are so many research papers in the USA on this- if necessary print off and every time someone says something in a disapproving way, bore them by asking them to read the papers.
Stay strong- knowledge is power.
I've been taking opiates for RLS for over 20 years and I am not a junkie. In recent times I've managed to reduce my dose a bit by changing the times I take them - with no symptoms of withdrawal at all. Do not listen to ignorance.
Stop caring. If you are college educated then I would imagine you would associate with people capable of educating themselves The people that don't know is because they are ignorant and either too lazy to learn or too dumb.
They watch and accept the mainstream news without challenge and accept that the opiate crisis is down to everyone using opiates as evil conniving junkies and not the whoremongering Pharmaceutical companies and complicit doctors
A$$holes like this should not be in your life - I have a relative that seems to think me using opiates is akin to heroin use and I shouldn't be using them. They never have an answer for what should I do about the pain and suffering so I avoid them. I cannot abide fools like that. Without opiates I could be writhing in agony on the floor for hours - should that be my choice?
If they went through bad RLS they'd happily inject heroin to bring themselves relief, if they can't see that then they either haven't suffered or haven't learned anything from their suffering.
My favourite quote about fools:
"To be ignorant of one's ignorance is the malady of the ignorant."
As you are probably finding out, RLS is different for everyone and the solutions are different for everyone. I have been fortunate in that I have been able to take Ropinirole for over 20 years but I know that is highly unusual. I am on a 3mg dosage. I take it about 2 hours before bedtime as it takes about that long to take effect. I also use compression socks during the day. This seems to help relieve me of any daytime symptoms. I know my concern with an opiate is that it would have to be a life long solution and that would seem to present dangers. So, avoid alcohol (this is my main trigger for RLS) , reduce stress (exercise) and continue to visit this site as the comments are both encouraging and helpful (especially Minerva's). Wish you well.
Not sure you should be getting daytime symptoms! That’s the first symptom of Augmentation. If I were you I’d read up extensively on here.
I was on Ropinirole for 18 years and like you thought I was ‘fortunate’ until I realised I wasn’t supposed to be squirming uncomfortably in car, train, plane journeys and unable to sit still through a film at the cinema.
Getting off Ropinirole was both the hardest and the best thing I ever did.
No more daytime RLS and journeys are easy now.
However- only you can take that decision.
I hope you continue to be fortunate and RLS free.
Asahd, I am on a low dose of Oxycodone at night and have told no one but my husband and my physicians. In my opinion no one else needs to know. Wish you the best in your treatment.
I have suffered from RLS since I was a little girl. I remember my Mother coming into my bedroom at night and rubbing my legs. Over the years it has gotten worse. I used all almost of the meds for Parkinson. About 20 years ago, I found that Oxycodone really helped. Now for about 5 years that is all I take. I have the 5 mg. tables and cut them in half. I start taking the half around 4pm and then a half pill for the next several years. I used to take two 5 mg tables and about three months ago got the prescription increased to 3 (5 mg.) tablets. I really find it helps with my rls. My only problem is that it does make my head itch but is really not bad and bearable. Anything so I can relax and sleep
Thankfully, once you get older you stopping caring what people think You don't owe anyone an explanation Asahd, so if you don't feel like mentioning it, you don't have to. I often say 'I have a sleep disorder' and leave it at that. It's hard when it's your family but if you didn't need it, it wouldn't be prescribed. There are many drugs that could be addictive, this isn't the only one. Give them a copy of the research paper mentioned by Lotte:
I'm just about to start this drug, if my GP agree to fulfil the sleep clinic request, and I have an appointment next week to request medical cannabis. People can knock themselves out if they want to say I am an opiate cannabis addict. As long as I get some sleep and don't have intolerable side effects, that's all that matters.
May the force be with you
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