Opioid induced augmentation - Restless Legs Syn...

Restless Legs Syndrome

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Opioid induced augmentation

Jumpey profile image
60 Replies

I know it's commonly thought that Tramadol is the only opioid that causes augmentation. But I'm wondering whether anyone has suffered worsening symptoms whilst taking other opioids? I'm taking Morphine and over recent weeks I've been experiencing persistent, horrible, intrusive daytime symptoms. I'm aware of the usual medication triggers and am not taking any of the offending drugs. Just wondered if anyone can relate.

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Jumpey profile image
Jumpey
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60 Replies
SueJohnson profile image
SueJohnson

Have you changed anything recently? For example, started a new medicine or an OTC supplement, changed your exercise routine, changed the foods you eat. I remember your iron was low and you were trying to get an infusion. Did you? Is it perhaps wearing off?

Jumpey profile image
Jumpey in reply to SueJohnson

Hi Sue,no new meds or food or exercise changes.

I had an infusion 5 weeks ago. I had hoped it would have helped by now.Having blood test next week to see if things have improved.

DataRN profile image
DataRN in reply to Jumpey

Jumpey I have recently learned that iron infusions are only effective in 50% of RLS patients. I learned this after getting my 3rd infusion with no improvement. Do you happen to know which IV iron they gave you and the dose? (Not that it matters - I am just curious and doing a little research on my own)

Jumpey profile image
Jumpey in reply to DataRN

I think it was Injectifer but I don't know the dose. I'm sad for you that the infusions haven't worked.

DataRN profile image
DataRN in reply to Jumpey

Thanks for the info. I am learning that the type and dose are quite significant. Unfortunately my insurance doesn’t seem to think so. Sad part is my serum ferritin looks terrific now. Only way to convince my insurance that Venofer didn’t work and for them to agree to allow me to get the Feraheme which was ordered for me would be via autopsy. I think I will pass on that for now at least.

Jumpey profile image
Jumpey in reply to DataRN

I'm so sorry you have to navigate such a horrible insurance system. Dr.B recommended 3 to me: Injectafer,Infed and Feraheme ( as you mentioned).Good luck.

DataRN profile image
DataRN in reply to Jumpey

My doctor ordered Feraheme for me but UnitedHealthCare refused and would only allow 3 Venofer infusions instead. Seems like we have to battle every step of the way to get the care we need. If I were rich, I would’ve had Feraheme anyway. Instead, I’m just a nurse who is at the mercy of my “profits over patient care” insurance company. Such a common story here in the US.

Jumpey profile image
Jumpey in reply to DataRN

It's heartbreaking for you. And I'm sure your patients value such a compassionate nurse.

WendyBea profile image
WendyBea in reply to Jumpey

hi, I’ve had about five infusions over three years and wasn’t always sure they helped. However,I recently read it can take up to a few months for one to help. This makes it difficult to judge their efficacy as you can’t be sure whether any improvement is due to the infusion or or whether it was going to happen anyway. Good luck!

Jumpey profile image
Jumpey in reply to WendyBea

Thanks for that information. I wish they had helped you.

WendyBea profile image
WendyBea in reply to Jumpey

Thank you. A couple of times I believe they did. It’s just that I was never 100 % sure, when there was an improvement, that the infusions were the reason. They certainly did raise my ferritin levels, though, so that should have helped my symptoms. I would give them a try. In fact, when I went through a recent had time with my legs, I was considering another infusion.

Jumpey profile image
Jumpey in reply to WendyBea

It's very difficult I've found to exactly pinpoint what exacerbates and what helps RLS. Such a difficult disease to manage.

WendyBea profile image
WendyBea in reply to Jumpey

Agreed, and everyone is different, it seems. Some swear by dietary changes. The only ones I’ve made are eliminating caffeine and alcohol. I do believe that helps.

Madlegs1 profile image
Madlegs1

Christmas is a nightmare time for rls sufferers.

All those offending but scrumptious foods and drinks.

Ah yes-- I'll be ok with just a little bit of that gorgeous piece/ tot or whatever..

In my 10 years on oxycontin, ive only got the heejy jeebies when Ifall off the wagon.

Teaspoon of brandy butter did for me Christmas night.🥵

I'm sure you will get back on an even keel, once your diet gets more "normal"

Good luck.

Jumpey profile image
Jumpey in reply to Madlegs1

I do hope so! X

LotteM profile image
LotteM

Sorry to read this, Jumpey. Be aware, though, that 'worsening' is not augmentation.

Madlegs has a good option. I myself was thinking that your activity levels may be different these days. I experienced that during the summer holidays and needed a higher dose of my medicines. Alternatively, are you now experiencing daytime symptoms? If so, that may be mini-withdrawal. Opioid withdrawal may induce rls-like symptoms. I had that when I was on tablets. After a prolonged time and as itdidn't settle, I got changed to a 7d patch. I do hope your worsened symptoms settle by themselves.

Jumpey profile image
Jumpey in reply to LotteM

Hi Lotte,I'm interested in the withdawal comment.I haven't stopped taking the Morphine so would that apply?

LotteM profile image
LotteM in reply to Jumpey

It may. It depends on how you take the morphine and most likely on how your body breaks it down. Ideally, subsequent doses ensure that the circulating level of a medicine in your body is more or less constant. However, with RLS we often take our meds in the evening only. By the time the amount of the medicine in your body drops below a certain level it is no longer effective. And sometimes, some medicines and for some people, the decreasing amount in your body may cause "withdrawal" effects; an uncomfortable (or worse) reaction of your body to this decreasing level. I had that when on oxycontin and also when on buprenorphine tablets (Temgesic), even though my dose was quite low. Some people are just more sensitive to this than others.

When to expect potential (mini-)withdrawal effects? Towards the end of the effectiveness time (don't know the right word in English), which depends on the way the morphine is administered, and absorption rate and the breakdown rate, which can all vary among individuals. You can find general information on drugs.com, but it can be quite a search. Hope this helps. Feel free to ask for further help or clarification if needed, and I'll see what I (or others) can do to help.

Jumpey profile image
Jumpey in reply to LotteM

That's very interesting .I had no idea. How did you know if sure it was withdrawal when you were on oxycontin and buprenorphine? And what do you now take instead?

LotteM profile image
LotteM in reply to Jumpey

Hi Jumpey, I wasn't sure, but suspected as I could counteract it by taking a new dose of the oxycontin or later buprenorphine tablets. In a later stage, I discussed with my pharmacist after consulting my gp. The pharmacist confirmed my suspicion as "very likely" and said I needed redosing much more often to attain a stable level. By doing so, I would end up with a far higher dose than needed just to suppress the RLS. He suggested to switch to a patch that delivers the buprenorphine (in my case) continuously for 7 days. That was Januari this year (2022). Since, my RLS is almost non-existent, apart from the 7th night or periods (very avtive holiday) with very high physical activity.

There are quite a few others on a similar patch. Mine is 5mcg/h, most need 15mcg/h.

Jumpey profile image
Jumpey in reply to LotteM

I'm so glad the patch has helped you.Long may that continue. I certainly wouldn't want to take additional doses.

Nikos64 profile image
Nikos64

I’d like to share my experience with Tramadol. My previous doctor had me on 150mg of Tramadol split up over the evening. It worked for RLS but the side effects were dangerous. I would have intense sleepiness “waves” in the evening. Those would go away as soon as I took the first pill of the evening.

My new doctor weaned me off Tramadol and cut it down to 50mg. Going down was difficult , but the replacement RLS drugs gabapentin and Horizant were helpful. The intense sleepiness in the evening is now gone. My next treatment involves fitting with a CPAP which should help w the RLS. After that I’ll consider stopping the Tramadol entirely.

Also to answer your question about opiates causing RLS augmentation I think yes ! I had a routine colonoscopy and was given fentanyl and midazolam. For 2-3 weeks after the procedure I had intense RLS. My doctor thought it could’ve been the fentanyl

Personally, I think Tramadol and other opiates are definitely something to avoid if at all possible. They definitely have long term bad side effects.

Good luck w your treatment

Best regards!

DataRN profile image
DataRN in reply to Nikos64

Hi Nikos64 l! You wrote a couple of things that indicate exactly why opioids shouldn’t have been a treatment options for you. Opioids are one of the very best and safest treatment options for RLS but only for patients whom they are appropriate for. The fact you now have a CPAP machine is a clear indication that you should not be prescribed an opioid for RLS. I am not surprised you had daytime somnolence. Sleep apnea should always be tested for and treated before prescribing opioids. I’m glad you have found an effective treatment option now. Good for you! All the best for restful nights in 2023. Happy New Year!

Nikos64 profile image
Nikos64 in reply to DataRN

Thank you for your reply! We’re in total agreement .. opiates are highly effective for RLS. All patients are different as I’ve learned from this board. But for me Tramadol just had bad side effects at that dose. I should also mention that I’ve been taking Tramadol since 2014 as prescribed and it worked well. It just started having bad side effects around 2020. I don’t fully understand why but at least my doctor is highly competent and very experienced with this condition.

DataRN profile image
DataRN in reply to Nikos64

Both you and I are lucky in that regard, I suppose. I have only been taking Methadone for 3 years. The dose has been increased twice already and it’s losing effectiveness. I’m very concerned about the lack of options when opioids no longer work.

WendyBea profile image
WendyBea in reply to DataRN

Are you saying C-PAP patients should not be on opioids or are you saying once someone is on it, they shouldn’t require opioids?

DataRN profile image
DataRN in reply to WendyBea

Not necessarily. Prior to being prescribed opioids, a patient should be evaluated to determine if they have sleep apnea or any other obstructive breathing disorders when sleeping because like other narcotics, opioids will depress respiration. It would be contraindicated for a patient with untreated sleep apnea to take anything that could depress respirations. For me, I had a sleep study completed prior to starting opioids to determine if I had sleep apnea. Treating the sleep apnea may be key to improving RLS thus avoiding opioids all together. 🙂

WendyBea profile image
WendyBea in reply to DataRN

Thanks. I wasn’t sure what you meant. I’m on both and have been for about thirty years; although, I believe the opioids ( Codeine) were prescribed later .

Jumpey profile image
Jumpey in reply to Nikos64

Thank you so much for sharing. X

Nikos64 profile image
Nikos64 in reply to Jumpey

you bet !

joepublic profile image
joepublic

I occasionally get a jerk in the abdomen at night on Targatin. It is just like a kick in the stomach & goes away after a few hours.

DataRN profile image
DataRN

Interesting to hear that your RLS has worsened even after iron infusions…so has mine! I am on Methadone. I finished a series of 3 iron infusions over a month ago and my RLS is horrible again. Even with the holidays, I have not had a sip of alcohol nor have I taken any other new meds at all or eaten unusual foods. My increasing symptoms started prior to the holidays. My RLS is the worst it has been since starting Methadone 3 years ago.

Also - not to be discouraging but I have learned that iron infusions are only effective for 50% of RLS patients too. Ugh.

Jumpey profile image
Jumpey in reply to DataRN

I'm so sorry you are suffering. I hope things improve.x

Dexterruf profile image
Dexterruf

I've been taking Tramadol for 15 years and I've not experienced augmentation. Nor felt addicted.

BeachGolfer profile image
BeachGolfer

I agree with Lotte. The daytime restlessness could be the Morphine wearing off. I take my last dose of Oxycodone when I wake up about 2-3 am. About 12 hours later I can sometimes get restless depending on my activity. I’m assuming that’s about when the Oxycodone in my system is at its lowest level. I don’t take another dose until the evening.

Jumpey profile image
Jumpey in reply to BeachGolfer

That's helpful to know.I however don't get symptoms at any particular time. It varies greatly.

Bganim1947 profile image
Bganim1947

I’ve been on Tramadol for many years and have never experienced augmentation.

Jumpey profile image
Jumpey in reply to Bganim1947

That's great to hear.x

Beckonwood profile image
Beckonwood

Ive been taking percocet for over 20 years and am still on the same dose. I don't find any augmentation. I start having symptons around 3 pm and if needing to sit will take a half of perocet then a half every hour until 10 pm. I find that this works for me. I would love to try a medication that I could only take one or two times a day. I am wondering about Lyrica.

Jumpey profile image
Jumpey in reply to Beckonwood

Thanks for your feedback.x

Shumbah profile image
Shumbah

I founded that regular use of pandiene forte and Oxycodiene both made it worse

Jumpey profile image
Jumpey in reply to Shumbah

Thank you so much for this feedback. What did you find worked long term?

Shumbah profile image
Shumbah in reply to Jumpey

2 mg sublingual Buprenorphine for over 3 years .

Dr Glen Brooks and Professor John Winkleman said the

reason buprenorphine has no creepage in dose and does not

cause Augmentation was due to the fact

Buprenorphine hangs onto a very small amount of receptors

in the brain . Buprenorphine is the only Opioid that hangs

onto less receptors and has a very high success rates,

The few people do have side effects would be best

to try and find away to fix side effects .

It may be dose related , delivery method,

Jumpey profile image
Jumpey in reply to Shumbah

Thanks for sharing. Long may it continue to help you.

Typicallygaslit profile image
Typicallygaslit

I’ve actually had the same question in my mind. I had to switch from Buprenorphine to morphine over Christmas due to side effects, and the RLS was worse than ever. I assumed it was probably withdrawal because one acts differently on certain receptors than the other. Suddenly morphine wasn’t dealing with the symptoms at all. It was very strange. I’ve had to make a compromise for now and will just have to see over time if there is something like augmentation going on. I’m using a bit of each and have been getting sleep thankfully. I agree with the above that we might also experience withdrawal in the evenings when the levels go down (if it’s not in the system consistently that is).

Jumpey profile image
Jumpey in reply to Typicallygaslit

Thanks so much for sharing . I hope you work it out.

Shumbah profile image
Shumbah in reply to Typicallygaslit

How long where you on Buprenorphine ?

What dose ?

What was delivery methods ?

What side effects ?

Typicallygaslit profile image
Typicallygaslit in reply to Shumbah

I was on it for about two, three months. I needed 500 mcg sublingual to sleep (it induced some sleepiness as well as controlling RLS) but it made me feel extremely tired in the day time, which was more than I could handle since I’m already chronically fatigued. The worst was the depression that culminated before Xmas so I was just crying all the time for no reason. I wasn’t necessarily suicidal but quite close. At that stage, I was so tired I couldn’t get out of bed.

So knowing that codeine keeps me awake, I suggested morphine. I’ve been taking a combination because the morphine no longer worked on its own. I’ve cut down to about 200-250 mcg Buprenorphine depending on severity of RLS which still makes me feel down, but not as badly. The morphine probably counteracts some of the Kappa antagonism which is probably behind my reaction. Bup can be used to treat depression, and I don’t know - I don’t tend to tolerate antidepressants of any kind, they make me depressed. 🤷

CookiePooki profile image
CookiePooki

Nothing helps this is a curse

RalphWiggam profile image
RalphWiggam

I have been taking Belbuca with complete success and no augmentation for over 2yrs now.

Jumpey profile image
Jumpey in reply to RalphWiggam

Thanks.I'm so pleased for you.

Gypsy-AU profile image
Gypsy-AU

Oh God I feel for you. A few years ago I was taking Codein for a tennis elbow for a few months and by the time I had to stop the Codein I realised that I had an horrific augmentation in my symptoms. Up until then I only had RLS in my legs at night but after the Codein augmentationI had it all over my body, including my arms and back. I actually wrote in this forum at the time asking for help because I was absolutely terrified that I had permanent change in my symptoms. Thankfully the daytime symptoms disappeared few months later and the RLS went back to “normal”. I took Gabapentrn for a few months which helped.

Jumpey profile image
Jumpey in reply to Gypsy-AU

What a horrible journey you had.Thanks for sharing. I hope things are good for you now.

Gypsy-AU profile image
Gypsy-AU in reply to Jumpey

Yes, I was in hell for a while there but things gradually got better. I will share the changes I made to my life in hope that it may help you or someone else.

Once I stopped the Codein, the following year I stopped smoking. I also started eating clean food, meaning I cook all my food so I know what goes in it. That removed to a great extent any foods with preservatives and other chemicals. I stopped drinking soft drinks too. I also started taking iron 3 times a week, Monday, Wednesday and Friday (I learned here that I should take it every second day, not every day). I have anemia so there is no question of whether I lack iron; I know I do so I supplement. I also take Super B vit (150mg), fish oil, Calcium with Vit D every day. I also got familiar with my sleep cycle. I noticed that at night I have a “sleep window” between 10pm and 10.30pm and if I don’t go to bed then I have difficulty falling asleep and my RLS may kick in. For someone who is a true night owl going to bed that early is hard, but not being able to fall asleep until 3-4am because of the RLS is harder. I don’t always succeed in sleeping that early but it’s worth the try. During the worst of my RLS symptoms I was under a lot of work stress and I am sure that contributed to it. These days I work a different job with less stress.

The other thing I know for a fact made a huge difference to my symptoms was I stopped drinking alcohol. This may be hard to do for some people but, due to the stress I was under and the RLS, I was abusing alcohol for years and it turned out to be a major problem in itself, so I had to stop drinking (I should say I was fortunate I could stop drinking).

There’s nothing that scares me more than the RLS returning me to the hell I was living in for many years, so I stick to “clean living” and my supplements as much as possible. These days my RLS is not too bad. I notice it (mainly in my left leg) if I stay up past 10.30-11pm but it’s mild and bearable. If it’s not letting me fall asleep, I usually get up and go up and and down my stairs a couple of times and try to sleep again. Eventually I succeed. The other thing that works for me is lying on my stomach and letting my legs hang of the bed, hyperextending the back of my knees

Triggers wise, I notice if I eat a lot of bread or sugar (which I do on occasion) it gets worse, but other that that I have not noticed any other triggers.

I hope some of this helps you or helps someone else.

in reply to Gypsy-AU

Hi Gypsy, are you still taking iron?

Gypsy-AU profile image
Gypsy-AU in reply to

Hi. Yes I take Ferro Grad C iron & Vit C 3 times a day in the morning. I take it without food because I don’t eat breakfast, but it may be better to take it with food? I am not sure.

in reply to Gypsy-AU

I take ferrous bisglycinate on an empty stomach about an hour before bed. It stops the RLS from kicking in and if it has already started it knocks it out in hour. Ferrous sulfate does not work for me. Nor would it work if I took it in the morning. Numerous people on here get immediate results from taking iron this way. See some of my previous posts.

Gypsy-AU profile image
Gypsy-AU in reply to

I’m glad you found something that works for you.

Woody4 profile image
Woody4

Tramadol is all I take. I was taking tramadol and Gabapentin together but started augmenting after taking them. At first tried weaning off of the tramadol and it got worse. So I quit taking the Gabapentin and stayed with the tramadol. I haven’t had any RLS for over 3 months

Jumpey profile image
Jumpey in reply to Woody4

So glad you found relief.

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