Tramadol for RLS

[TheGiz]

Interested in people's thoughts on using Tramadol long term for RLS. I've had worsening symptoms for about 10 years, and getting noticeably worse in the last year. I've tried ropinirole and pregabalin but only for a few days as they both made me feel terrible so they may well have helped if I'd stuck it out. I also have an autoimmune disease that is causing hypothyroidism. My RLS symptoms definitely got worse at exactly the time my thyroid levels got worse. Not taking medication for thyroid yet. Have been using tramadol over the last 2 years. For about 6 months I took it daily and it eliminated my symptoms of RLS but I decided to stop taking it and suffered from some moderate withdrawal. So now I take it every other day but that means I get sleep only on the nights I take Tramadol. I'm worried about long term use so not sure what to do next. I only take 50mg at night and if I take 100mg I get better results for longer. 51 year old male pretty fit and healthy weight.

[SueJohnson]

Can you get buprenorphine? Tramadol is the only opioid that can cause augmentation. Thyroid medicine won't make RLS worse.

[TheGiz in reply to SueJohnson]

Thanks Sue I'll ask my Dr next week.

[Madlegs1]

As Sue says, try Buprenorphin,

But if you can't get that, then oxycodone ( Oxycontin) may be an option.

You are already opioid experienced, and so shouldn't experience too many problems.

Start at a low dose of 5mg twice a day, and see how that goes.

Do get your iron levels checked, and keep a diary for discovering any possible triggers.

You may surprise yourself.

Good luck.

[TheGiz in reply to Madlegs1]

Thanks. I should have said I had an iron infusion so am around 400 now, but that unfortunately made no difference. I've just watched that mini series about Oxycontin and am kinda terrified of trying it 🤔😁

[johannasuar in reply to TheGiz]

I saw the mini series too and I don’t think I would EVER take oxicontin in my life. Very scary. I’m in Tramadol for about 12 years without any problems.

[Jumpey]

I used tramadol successfully for many years. Tolerance was a periodic problem.I used to take a month's drug holiday and it kicked back in again. I began on 50mg.I wasn't prepared to take more than 100mg.When this stopped working I changed to low dose morphine.

[Nikos64]

I’ve been on Tramadol since 2014. Initially started on 50mg then 100mg and finally 150mg divided in 3 doses over the evening. For the first 6 years it worked perfectly and did a great job of controlling my RLS. However, gradually I started having an extremely dangerous side effect: I would involuntarily fall asleep during the day for a few seconds and then wake up startled.

After moving to FL and changing doctors I was weaned off Tramadol and given Horizant and plain gabapentin. The sleep attacks stopped but my RLS was not controlled. A few months ago my sleep specialist started me on CPAP for OSA (a contributing factor for RLS btw) and also 5mg of oxycodone. My RLS is about 90% controlled but I sleep great anyway. Btw I didn’t think i had OSA but the sleep study proved it based on the oxygen saturation levels

So, I second Sue Johnson’s and MadLegs advice to get off Tramadol if your doctor goes along with it.

Just a warning though : oxycodone and I think bupremorphine are schedule 2 in the US and TIGHTLY controlled. At least Florida doctors will not send prescriptions out of state. So if you travel you will need to plan ahead with your doctor and ensure you have an adequate supply.

One last comment, I think it is better to under treat your RLS than to get 100% symptom remission. Unfortunately, these drugs can be dangerous and you’re better off taking as little as possible and supplementing your treatment with non pharmacological options like magnesium, vitamins, mild exercise, sleep hygiene and stress control! (Look for posts from Sue Johnson for a more exhaustive list)

ps I too was terrified of taking oxycodone But OxyContin is more dangerous because of sustained release property Finally the people in a series on OxyContin were on really high doses Controlling RLS takes a LOT smaller doses

Good luck !

[TheGiz in reply to Nikos64]

Thanks for all that info. I'm pretty sure I have some form of OSA based on my poor sleep and what my wife has told me about me stopping breathing at times during the night. Unfortunately my sleep is even worse at the moment due to some prostate issues waking me up to 10 times a night (on the nights i dont take Tramadol). Luckily I am one of those people who can survive on little sleep.

[Nikos64 in reply to TheGiz]

If you’re having prostate issues that is one reason to get off Tramadol. First of all, when I was on Tramadol I experienced problems urinating especially a couple of hours after taking it. Also, when I was going thru withdrawal I experienced what I can best describe as “prostate RLS” or overactive bladder.

After I got over it my prostate / bladder issues went away.

A pharmacy student told me Tramadol is a “dirty drug”. It affects many neurotransmitter systems. She thought I should get off it. I’m glad I did.

Please keep in mind that everyone reacts to drugs differently. This is just my experience with Tramadol. It eventually causes RLS augmentation. Personally, I regret being on it for so long.

[TheGiz in reply to Nikos64]

That is very interesting. I'm not 100% sure when my bladder issues got so bad, but I know I had some overactive issues the year prior to starting Tramadol but now it's much worse so I think that's another reason to get off it. I'll add this to my list of things to discuss with my Doctor.

[coldfeet7 in reply to TheGiz]

Concerning sleep and bathroom breaks. I had prostate issues for two decades and my Hytrin/Terazosin use went from 5mg a day to 20mg a day, the max dose. Over that time my prostate grew quite large and after much research, I decided to have the aquablation procedure done due to its safety and predictability. I couldn't be happier with the results. I sleep through the night, can watch two movies back to back if I want to and don't have to take an antibiotic once a year to deal with a UTI.

[SueJohnson in reply to Nikos64]

Buprenorphine is Schedule 3 in the US.

[loops1207]

Hi, I’ve been on Tramadol for 5 years due to chronic back pain. It does absolutely nothing for my RLS unfortunately. I take 200mg a day. It’s awful to come off also, the withdrawals are horrendous. Good luck, I hope you find a solution.

[Niamhcaiden]

They don’t help I take them for chronic pain and they don’t help me with anything 😢🤦‍♀️

[johannasuar]

I’ve been on Tramadol for about 12 years and I don’t think I could live without it. I started with a 50mg tablet at night about 1/2 hr to an hour before bedtime but after about 4 years I got some augmentation and the RLS started showing around 7 pm, too early. I learned that the trick to taking Tramadol is to take it about 2 hrs before it starts, so finding this out I started taking (1)50 mg pill at 5:30 pm and another at 10:30 pm. That has been my schedule for 8+ years with no problems. I do get some constipation but I learned to take care of that, I’m under my doctors care and I have to check in every 3 months as required by law here in the USA where I live. I have not had any other augmentation since when I started the two pills which is low compared to other drugs people take. Just one last thing to say, this does not work for everyone, I’ve read if people hating Tramadol because they loose sleep or experience something else, I guess I have been lucky. When I have forgotten to take my pill on time I do get RLS , full body, so I just walk it out or keep busy till the pill kicks in. Good luck.

[LotteM]

I took tramadol for about a year, so I can't share experiences about a longer term use.

Question: why don't you take something for the hypothyroidism? Isn't it severe enough? If you do want to take thyroid medicines, do check in Sue's posts which ones seem usually 'safe' for people with RLS. She has been very good at collating and sharing such information.

[TheGiz in reply to LotteM]

In answer to your question my TSH is 7.7 which, although considered high, is still classed as sub clinical so not requiring medication yet. It's going up each year so will eventually require medication I'm told.

[Apples70]

I have taken Tramadol for a lengthy period of time, not for my RLS but due to chronic back problems. I have found that at times Tramadol does make my RLS worse, I am currently on Gabapentin for my chronic back pain and was told my my consultant I see for my RLS that Gabapentin helps. I also take Marol which is a slow release Tramadol which I find doesn't trigger my RLS. My consultant is now also going to be prescribing Rotigotine transdermal patch, not started with these yet but I am hoping they work. Hope this helps .

[SueJohnson in reply to Apples70]

You really don't want to start the Rotigotine transdermal patch. It is a dopamine agonist like ropinirole and pramipexole and up to 70% of people on it will suffer from augmentation, which believe me you don't want. How much gabapentin are you taking? You may not be taking enough as the Mayo Clinic Updated Algorithm on RLS says the average effective dose is 1200 to 1800 mg. Or you may not be taking it in the correct way as doses above 600 mg are not as well absorbed.

[Apples70 in reply to SueJohnson]

I'm taking 1200mg (4x 300mg ) 3 times a day of Gabapentin

[SueJohnson in reply to Apples70]

If your RLS is primarily at night you will want to increase the gabapentin you take at night. The amount you are taking at night is a low dose. I would increase the amount you take at night by 100 mg every couple of days until you find the dose that controls your RLS. 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin " at night. You can take up to 3600 mg daily. If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason. 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 as yours isn't or s/he would never have suggested the Rotigotine transdermal patch at Https://mayoclinicproceedings.org/a...

[SueJohnson in reply to Apples70]

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Meanwhile 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, eating late at night, 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, fennel, 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, CBD, 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, vibration devices, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Apples70 in reply to SueJohnson]

Wow thank you for all this information, I don't really want to go into the Rotigotine. As well as the Gabapentin I take 50mg tramadol ( 2 in morning and 2 at night = 200mg a day, I also take baclofen 10mg at night, I also take 1 over 50 men multi vitamin. I hardly drink caffeine and definitely not after about 6pm, I hardly drink alcohol, I have a healthy balanced diet, I don't eat to much meat, I don't eat fatty food. I eat plenty of fruit and Greek yogurt. I do moderate exercise with walking and swimming. My ferritin levels have been checked and were ok. I listen to music and that does help it at times but not always. Also, My RLS has started to come on earlier in the daytime now .

[SueJohnson in reply to Apples70]

Once you get your RLS controlled at night by increasing the gabapentin you might want to experiment with adding some an hour before your daytime symptoms.

Do you know what your ferritin is? Doctors will tell you it is fine, but what is fine for others is not fine for those of us with RLS. If you don't know, call and ask.

[Apples70 in reply to SueJohnson]

I don't know exactly what it is but I can call and check .

[Cobobay]

I have been given Tramadol for my fractured hip and my.lwgs are driving me mad, I've started gabapentin last week's and was feeling OK till I started taking Tramadol, so I definitely wouldn't recommend.

[John_naylor]

After augmenting on dopamine agonists and not getting sufficient relief on Gabapentin I started on Tramadol about 10 years ago. It has really kept me going at 100mg but the last couple of years it seems to have less effect. I won’t increase as it risks augmentation (not again!) and is the only opiate to do so. From the latest Mayo Algorithm I asked for an alternative but my GP refuses (“opiates? That’s why the Americans are in such a mess”). I’m still working on increasing my Ferritin (he refuses an IV iron). Hope you can get an alternative and I agree the risk of increasing Tramadol….

Good Luck!

[Middlesbrough]

Hi Iv got rls I’ve had it for 10 yrs Iv started taking 8 tramadol a day and it works Iv been on tramadol for about 15yrs the doc just keeps giving me them I take 2 on morning 2 at dinner time and 2 before I go 2 sleep