Daytime RLS symptoms help.: I have been... - Restless Legs Syn...

Restless Legs Syndrome

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Daytime RLS symptoms help.

Jumpey profile image
50 Replies

I have been having persistent and very distressing RLS symptoms during the day for a number of months. I don’t think I'm taking any medication that is causing this. I am taking Omeprazole. The symptoms started a couple of months after me starting to take this PPI. Has anyone else had this experience?I contacted Dr.B.He didn't think it was the Omeprazole. He thought it could be due to augmentation from Tramadol. I 'm unsure about this because the daytime symptoms started whilst I was on Morphine. Nevertheless I stopped taking the Tramadol 5 days ago and returned to Morphine. The daytime symptoms have persisted. If it is Tramadol augmentation I'm wondering how long it will take for the increased symptoms to reduce.Does anyone have experience of Tramadol augmentation recovery to share?

Or any other thoughts to explain the daytime symptoms? Could it be normal progression of the disease ?

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Jumpey
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50 Replies
SueJohnson profile image
SueJohnson

You shouldn't stop tramadol cold turkey. That may be what is causing your symptoms.

Jumpey profile image
Jumpey in reply to SueJohnson

Interesting. My symptoms are the same before and after stopping theTramadol. And I've stopped Tramadol straight away several times with no ill effects. But I'll bear it in mind. What is the recommended protocol for coming off Tramadol?

Guitarist235 profile image
Guitarist235

That medication may have started the problem, I started using anti-anxiety tablets and it gave me the worst RLS ever. So I simply stopped using it and tried something else.

LoverofParis2014 profile image
LoverofParis2014 in reply to Guitarist235

Might Alprazolam (Xanax) be a source of increasing RLS ???0

SueJohnson profile image
SueJohnson in reply to LoverofParis2014

Xanax is safe for RLS and wouldn't cause worsening.

LoverofParis2014 profile image
LoverofParis2014 in reply to SueJohnson

Thank you for that info. It’s probably pain that is waking me up between 3 and 4am. They are trying to get me in with endocrinologist asap to start treatment for hyperthyroidism -thoughts being it is playing big role in RLS for me. I was on FloMax x4days got the urology problem last month. Felt like I was having actual seizures in my legs. Never again! Hope that one is on your no no list! What about Pain meds after surgery-or maybe you are planning to send morel info on meds. Take your time!

in reply to LoverofParis2014

FlowMax has anticholinergic properties and can definitely set off RLS.

ChrisColumbus profile image
ChrisColumbus

When the Omeprazole question gets raised here Replies tend to he divided between some who say that they took it with no effects, some who say that they realise that it inhibits iron absorption but don't think it triggers RLS per se, and others who say that they just can't tolerate it because of RLS effects. This usually ends with the 'we're all different' epigram. I've seen it suggested that it's more likely to be a problem for those who've been on Omeprazole for more than a month.

Stop/starting Tramadol to try to avoid or delay tolerance/augmentation works for some for a while (several years in some cases) but then it tends to stop working. It can also lead to unpleasant side effects and Tramadol dependence.

prescription-drug.addiction...

Jumpey profile image
Jumpey in reply to ChrisColumbus

Thanks for your thoughtful response.

Madlegs1 profile image
Madlegs1 in reply to ChrisColumbus

👍

Marlayna profile image
Marlayna

sorry you’re dealing with it. I am starting to have symptoms during the day as well and I’m very disheartened. About a year ago I took omeprazole and it definitely made my RLS worse. No doubt about it. I stay far away from that drug now.

Jumpey profile image
Jumpey in reply to Marlayna

So sorry you are suffering. Dud Omeprazold cause an immediate trigger of symptoms or was it over time?

Marlayna profile image
Marlayna in reply to Jumpey

hi, sorry just saw your message. It was immediate for sure.

Tildabri profile image
Tildabri

I don't take any drugs, but I have always had daytime RLS, which is distressing and really makes it hard to work, or even sit and read the paper. So unfortunately it may just be a progression of your symptoms that is unrelated to your medication.

Jumpey profile image
Jumpey in reply to Tildabri

I am so sorry you have suffered for so long g in this way.It is so hard.x

SueJohnson profile image
SueJohnson in reply to Tildabri

Did you ever have your ferritin checked?

SueJohnson profile image
SueJohnson in reply to Tildabri

There is no reason to suffer. Medication can control your RLS. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

SueJohnson profile image
SueJohnson in reply to Tildabri

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

serengazer profile image
serengazer in reply to SueJohnson

Thank you for that amazing list of do’s and don’ts I am going to put in fridge till memorized Appreciated!

twizzle303 profile image
twizzle303

Hiya, I have had restless legs (and occasionally arms) since i was 13. Both my parents and now my sons have it (thanks mum). Its horrible in the day but i do find exercise helps and trying to sleep, always worse when i am tired. Have you tried moving to gabapentin which is the recommended treatment. I have lost the link but someone will have it here.

Jumpey profile image
Jumpey in reply to twizzle303

I've tried Gabapentin and Pregabalin but couldn't tolerate them sadly.

pennygates profile image
pennygates

I can't comment on Tramadol as I don't take it, but Omeprazole definitely is on my list of drugs to be avoided. Don't know why it should be, but it makes my RLS. It's a bit of a coincidence that yours started to get worse after starting Omeprazole. It might be easier to stop the Omeprazole for a while than to stop taking Tramadol, especially suddenly. Had the same reaction with Lansaprazole, another drug similar to Omeprazole.

Good luck.

Jumpey profile image
Jumpey in reply to pennygates

It could be the Omeprazole use over time. Unfortunately I have severe gastric problems so need yo take something. I've changed to Cimitidine to see if there's a difference.

pennygates profile image
pennygates in reply to Jumpey

Yes, I can see your dilemma. It must be difficult for you. I have gastric issues too, but further down the digestive system, in the small bowel, but have flare ups in the stomach. I hope cimetidine will help you. It's likes snakes and ladders at times, juggling medication.

halperinchen profile image
halperinchen in reply to Jumpey

hi, Jumpey: yes , Omeprazole definitely made my rls worse.

Jumpey profile image
Jumpey in reply to pennygates

Just to clarify ,are the PPIs immediate triggers for your RLS or do problems start over time?

pennygates profile image
pennygates in reply to Jumpey

My response happens within an hour or so.

Jumpey profile image
Jumpey in reply to pennygates

That is clearly a trigger. I don't get that at all.

pennygates profile image
pennygates in reply to Jumpey

I do what Lola does and drink Gaviscon instead. Not ideal, but it's better than PPIs side effects

Jumpey profile image
Jumpey in reply to pennygates

I take gaviscon too.My problems are too severe to take it alone.I'm waiting for stomach surgery.

pennygates profile image
pennygates in reply to Jumpey

Oh I see, . I'm sorry to hear that. Its bad enough having one difficult medical condition. When there are more it makes restless legs all the more difficult to deal with, especially by doctors who often think RLS is a minor complaint. I had emergency surgery last year on my small bowel and had a lot taken away and they did a resection. I remember they gave me metaclopramide (not sure about the spelling) after surgery for my constant sickness (sometimes the body gets rid of a lot of gunk after abdominal surgery). This is something which might be relevant for you too. My restless legs went berserk after taking it, and I was in pure agony for two days after I took it. Being stuck with a large abdominal wound and trying not to move your legs is not a happy place to be. I actually cried with it all, as I felt trapped in my bed, but compelled to move . The symptoms were all over my body. So if you need, or they offer you anti sickness or anti nausea medication I would advise you to tell them that you can't use either metaclopramide or cyclizine, and tell them it will set off RLS. Both of these are known triggers as they work on the brain. The best anti sickness in those circumstances is called Ondansetron. Forgive me for pushing my advice, and you may not even need anti nausea help , but I wish someone had forewarned me about it, as I remember it being a bit of a nightmare after surgery. The doctors/nurses were happy to comply after they saw the state of me. Now I always tell them I can't take them. And I'm given Ondansetron instead. I wish you the best with your planned surgery, and hope you make a good recovery.

Jumpey profile image
Jumpey in reply to pennygates

I couldn't agree more. I also have lung disease . Restless Legs is torture when feeling unwell with other problems. And you are right, the predominant medical culture is to trivialise RLS.I'm so sorry you suffered so much. What an absolute nightmare.I had surgery for breast cancer last year and being aware of problems with many anti- nausea drugs post surgery I asked for and was given Zofran with no problems. It was wonderful to be listened too.

Lola43 profile image
Lola43

Hello 😊

In my experience both omeprazole and lansoprazole have sent my legs crazy. I’ve stopped and started it several times and it definitely effects my RLS. I don’t take it now, instead I chug gaviscon. Which isn’t ideal, but doesn’t effect me anywhere near as much.

Lola x

Jumpey profile image
Jumpey in reply to Lola43

So is this a build up over time with the PPIs? Because for me they don't immediately trigger RLS like an antihistamine would for example.

Lola43 profile image
Lola43 in reply to Jumpey

I used to find that I could use a PPI for 3 days max before the RLS ramped up. However now I only have to take one and it causes it to right off the scale . I think they do act on either dopamine receptors or they prevent something going on with the gut that can help iron absorb

Jumpey profile image
Jumpey in reply to Lola43

That's interesting. I'm experimenting with Cimitidine at the moment to see if my RLS symptoms improve.

Poe7 profile image
Poe7

Hi, so I took tramadol for 12 years. I took 100mg 4 times a day.

I've been taking methadone for almost 2 years and my symptoms are pretty much gone. I do get bouts off it once in a while but for the most part as long as I take it on time every moring and night I'm good.

But for me my daytime symptoms from the augmentation never went away. If I miss my medicine at 8 in the morning by about 11 I'm starting to feel it.

I also started taking Omeprazole daily about a year ago add I haven't noticed any changes for better or worse with my RLS. I also take famotidine twice a day. (I have severe gerd) and no differences from that either.

Jumpey profile image
Jumpey in reply to Poe7

Thanks so much for sharing your experiences. So helpful. I really can't work out whether Omeprazole is a factor. Like you I have severe Gerd and am awaiting surgery.So you had augmentation from the 12 years of Tramadol?

Poe7 profile image
Poe7

Yes, severe augmentation. It was horrible. From the time I learned that my RLS was 24/7 head to toe and the time I found a neurologist who actually knew about it and that methadone is the treatment was almost 4 years. My Dr I had been seeing made me reduce the tramadol down from 400mg a day to 200mg a day. It took me 8 months to do that and I was miserable and never had a moment off not having even slight RLS until I started the methadone. Which was a literal lifesaver.

Jumpey profile image
Jumpey in reply to Poe7

Omg what an horrendous experience. Thank goodness you found methadone. As you say it saved your life. Have your symptoms lessened now that you are off Tramadol?

Poe7 profile image
Poe7 in reply to Jumpey

Yes! Yes! Yes! I basically do not have RLS symptoms anymore. Once in a while if I'm late on my meds but I just take it and take a hot bath for 15 minutes and it's gone. I had an issue about 6 months in with it coming back in the middle of the night but my Dr added 2.5 mg to my nighttime dose and that took care of it. I now take 5mg in the morning and 7.5 at night. I can even take Benadryl now with no issues bc the methadone combats the RLS side effects that come with diphenhydramine. (I'm literally allergic to everything and break out in hives, have asthma attacks or swell from something I've eaten, touched or gotten bitten by all the time, lol.)

Jumpey profile image
Jumpey in reply to Poe7

I'm delighted you've found relief.

houndrescuer profile image
houndrescuer

Jumpey , I'm not on Tramadol, but am on Omeprazole, 40mg bid (probably going on 15 yrs?). Your post has made me quite aware of some changes I've had over the past few months and now I'm curious if there's any correlation. I've been having terrible daytime RLS as well. I'm now realizing there have been many times as of late that I've neglected to take my a.m. dose of Omeprazole. When I finally do take it, usually it's close to midday. This happens more often than not, as does my daytime RLS. I'm wondering if it could be contributing to the daytime RLS as it seems to come on around midday? Medication can start to affect us differently even if we've been on it for years. I'm going to skip it a few days and see if there's any difference. My esophagus will be on fire, but right now the hell that is RLS is worse.

Also..

I just came across this post related to your question. There are people (in the replies) who say Tramadol did affect their RLS. You might check out what they're saying.

Best of luck!

healthunlocked.com/rlsuk/po...

ELLSBELLS profile image
ELLSBELLS

Used to be ok with omeprazole but as I have aged and have other problems I cannot take omeprazole, even at a lower dose, legs go haywire.

Jumpey profile image
Jumpey in reply to ELLSBELLS

Isn't that strange. So does it now cause immediate problems?

ELLSBELLS profile image
ELLSBELLS in reply to Jumpey

Yes happens very quickly after taking even 10 mg of omeprazole. Yet I had no problem with ranitidine which some people cannot tolerate.

Jumpey profile image
Jumpey in reply to ELLSBELLS

We are all so different. X

lenpharleyd profile image
lenpharleyd

My personal experience with daytime RLS has only been as a result of augmentation from dopamine agonists. Hope this resolves quickly for you.

Jumpey profile image
Jumpey in reply to lenpharleyd

Thanks. X

Jetto profile image
Jetto

Tramadol & Morphine both do a poor job preventing RLS pain. You end up taking more Mg than you really need to last a decent amount of time. Methadone lasts a lot longer so you can take less Mg to prevent RLS symptoms. You may only need 5 mg to last 12 hours.

Also If you had to take some Cortisone, Cortisone destroys Opioid meds. FYI

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