I was fortunate enough to see a top specialist in restless leg syndrome. As I am 32 he has advised I come off the tramadol I take at night and instead take pregabalin I am on the neupro patch so they should work well together. To be honest getting to sleep which is usually my biggest problem is no longer an issue. It's the staying asleep. I get between 4 hours and 4 and a half hours a night then I wake up with pain in my legs and need to get up. I'm not on the suggested maximum dose of pregabalin he's increasing it gradually.
I have tried a lot of other medication previously. What i want to know is, is the lack of sleep due to the tramadol being stopped?? Has anyone else suffered this way??
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Heidi85
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I am very similar. Need to take cocodamol in middle of night. Also take two pregabalin but that has stopped controlling RLS. I am now raking ropinirole but not sure about it. Real filemma
Try CBD. It has helped me. I have written other posts on this site and am trying to get the word out that this safe and natural oil taken orally is a great symptom reliever blessings!
I have to take at least 15mg and up to 30 to 45 mg at times. The only CBD that has this high of a concentration is in the concentrated oral oils. You have to read the labels carefully to determine the actual milligrams of CBD that you are getting per dose. The gel caps and some of the other products are very low in CBD. Blessings!
If you search CBD oil in your search engine you will find it easily. CBD stands for Cannabadoid oil. It is from the hemp plant as is marijuana but it has had the property that causes the "high" (THC) removed. So it doesn't have the psychoactive effects. . I have found it effective for me.
Your experience is mine and others who have severe RLS. I am resigned to the fact that RLS (whole body involvement) will awaken me after only a few hours no matter what meds I have taken to get to sleep. Anyway I have found CBD oil. Research it and get some (can be ordered online). It is safe and has been very effective at relieving my middle of the night symptoms so I can get more sleep. Blessings to you on your journey. You are not alone!
Hi Lolly....I’m curious to try the CBD oil. Have you tried taking it without any prescription meds or just as a back up? How much do you need to take and how quickly does it alleviate the symptoms?
As we know managing this curse can be a nightmare so anything is worth trying!
I just replied to 2birds on this same thread and addressed your same questions. This was before I read your post. Yes I use Lyrica for general relief but it does not help me sleep. I take Temazepam to actually be able to get to sleep. Right now I use CBD in the middle of the night when I am jolted awake by this awful syndrome. I used to remedicate either with more Temazepam or with Tylenol 3. I hope that I can eventually get off of Temazepam and Tylenol 3 entirely. CBD kicks in and allows me to go back to sleep in 15-20 minutes. I'm hopeful for the future for the first time in years. Blessings!
Thank you so much Lolly! I will order some & keep it in reserve. Like so many of us who post on here, I have been on the meds merry-go-round for too long....& my current Rx drugs are sure to fail sooner rather than later....that sadly is the reality. So pleased you’re feeling positive & good luck!
In my experience and from what I've read everything which starts as effective wears off eventually including pregabalin which I am convinced from personal experience causes augmentation too though differently from the DA's.
If I was now someone who could get 4hrs sleep in a row I wouldn't take any of these things as getting 1-2 hrs at a time is now just wonderful.
I survive by having a day time nap when there is no RLS.
I think Paracetamol, codeine ( I keep to max 30mg once a night and try not to take each night ) while trying really hard to get my ferritin way up over 100 ( not yet achieved ) works as well as anything.
It is a nightmare, exhausting, debilitat inf condition and I've come to realise that trying to get rid of it completely is a hope too far.
I used to look forward to 3am as I knew that that would be my last wake up till a proper getting up time but not any more.
At that time I was still working and started pregabalin which was at first a miracle cure. There is no way I could work now.
No idea if this is natural progression or due to various drugs causing augmentation.
I also find using the various 'switch off' things, not just walking about, in order to get back to sleep once woken restless as fast as possible are very useful. Mine are knitting, doing brain teazing puzzles (code word for me ), playing piano, warm baths, waking outside on cold ground and also avoiding eating after about 6pm.
I wasn't sleeping at all before the patches not even for an hour I was in soooo much pain and it would be for 6 or 7 nights then I'd sleep for 1 then up again. I was soooo depressed I'd literally had enough my gp used to say it was because of my weight but not sleeping made me comfort eat. My new gp and seeing neurologist and this very specialist have changed my meds after trying lots of things. So I am fortunate to get 4 hours sleep. But I work long hours and the lack of sleep can take it's toll.
I increased my pregabalin again last night and slept for 7 hours which is a record for me I feel Sooooo much better for it. I'm now on 75mg at night and 50mg in the day which will increase next week to 75mg so only a low dose I believe along with my patches hopefully the tramadol will be non existent for a while
You poor thing. Having to work as well must be impossible. Also tell your Dr that Pregabalin makes you put on weight. It truly does. I have been on and off it. On - weight gain 1 stone +, off it weight falls off again
I've lost 4stone and am on slimming world atm so they can monitor my weight
Are you reducing the Tramadol slowly? The faster you stop the more likely you are to experience problems.
Dr's don't like people using Tramadol although it is a very effective drug ime, I think its down to its abuse potential although pregabalin is widely abused too).
The pregabalin will take a while to work and iirc I don't think you should move quickly up through the doses I think I read that after I sped through to max before declaring it a failure.
I've stopped Tramadol three times now, (once I was on 400mg short acting daily, once 300mg long acting and most recently 100mg short acting daily) every time I've gone cold turkey knowing I would be over it sooner but the first two times were difficult as there was not only an increase in RLS that wasn't being treated I had more RLS as a withdrawal symptom. If you have been on the top or above dose you really should withdraw slowly to avoid any chance of seizures.
It can be very disheartening in the beginning with the increased pain and discomfort and many fall at this stage as they believe it will always be like this but it isn't. Stick with it and take plenty of hot baths and showers to help and hopefully sooner rather than later things will improve.
Also as lolly pointed out - CBD oil, (not hemp seed oil!!!) can be helpful - I used it in withdrawal too.
Alison7 has some good advice there too - distraction is a great tool in our arsenal. The more absorbing and complicated the better. I play drums when things are bad, particularly in the evening and morning after everyone has gone, (dare not do it at night or in morning before the wife has left). Not only do I get to move my legs and arms to fight RLS but the concentration on learning and maintaining beats and moving the limbs independently completely takes me away from the pain and suffering.
I just wish I had learned before I lost my job so I could afford a tutor, (my wife also wishes this A LOT ).
Thank you. Yes I was only taking it at night. I didn't stop the tramadol until I was on 50mg of pregabalin twice daily, but that was a week ago I increased it to 75mg last night and was very lucky to sleep for 7 hours
I have a piano with a quiet practice pedal and along with a husband who is hard of hearing now that works!
I would also say much as it helps to take out frustration, I would try to avoid blaming the drs. I am one myself and know how little info there was out there and how the pharm co's try to influence prescribing.
There is also as in many conditions no one more expert than patients.
Don't know about the rest of you but even when I don't have symptoms during the day it is difficult to conjure up the feeling as it is unique, almost indescribable & unlike anything else so for folk who don't have it it is almost impossible to empathise with I think.
I often think that the advice about distraction might imply it is 'all in the mind' but to me it's like flicking an off switch which feels as if another brain chemical kicks in and it begins to melt away.
Part of ourjob is to guide, plead and educate I think.
Without my doctors input I would have literally given up 6 or 7 nights with no sleep at all then 1 night sleep then 6 or 7 nights no sleeping for over 10 years id had enough. I was fortunate enough to sleep for 7 hours last night after increasing the pregabalin to 75mg I feel a lot better today
I've come off tramadol that I was taking for nerve pain but it gave me nightmares so not getting restful sleep I felt like a zombie..
I was not in any way telling you you should be content with 4 hrs sleep. Just I have a suspicion that the severity I have now is the result of taking pregabalin which was originally so effective it felt like a miracle
HI heidi, sorry its been awhile, kids off school, nightmare!! I am on pregabalin and my dose has just been increased to the max as are all my meds. I get RLS day and night and the pain in my legs is terrible. I also take tramadol and topmirate, co-benedopla and fluxoine and benfluoxide (something like that) a water tablet but I have had it for nearly 4 years now and these tablets are the only ones that seem to help just a little bit. I would do as you doctor says and if you cant sleep after that then speak to him again, the communication between GP and patient is what helps me thru as I know that my doc understand me and know exactly what meds I am. Other doctors havent a clue what you are talking about. Take care sweetie xx
Suppose that’s better than nothing!! Do you find that your legs are bent when you go to sleep? If my legs are really bad then I bend my legs. Problem is though obviously they don’t stay that way all night ☹️
Does Tramadol cause rsl? Been on SR Tramadol for two years morning and night due to my bad knees last year had a full knee replacement on my R knee 5 weeks ago had my L knee done,not sure how long I have had RLS at least that long but recently started to affect my whole body...
No. Actually, tramadol is often used to treat severe and refractory cases of RLS, including augmentation. However, withdrawal from tramadol may well cause RLS. Temporarily, but can be nasty.
Are you on other meds? Many may induce RLS, e.g. antidrepressants, sedative antihistamines or otc cold meds. Have a look at the treatment page on rlshelp.org/
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