Nightwalker: I am new to this, what... - Restless Legs Syn...

Restless Legs Syndrome

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Nightwalker

RegBlunt28 profile image
42 Replies

I am new to this, what does tramadol do for restless legs ? Iam about to lose my mind over this I walk in circles crying most nights its all night. I stomp, hit, shake my legs anything so I can sleep. I have sleeping pills, norcos, xanax. you name it I do it. I could go to Dr. but really what can they do ? I am so desperate. Thank you

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RegBlunt28 profile image
RegBlunt28
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42 Replies
Madlegs1 profile image
Madlegs1

You're in the right place- Now start doing some research. Check out rlsuk and rlshelp.org for lists of medications to take and to avoid. Then go to a recommended doctor - depending on where you live. Give him the information.

You can also email Dr Mark Buckfurher at rlshelp.org.

There is help for you- but you have to go get it. Good luck. And we've all been on the same road. Cheers.

Pippins2 profile image
Pippins2

Tramadol works on the urge to move sensations as well as the pain Are you taking any meds that could be making your RLS worse eg antidepressants, antihistamines and antisckness meds? X

RegBlunt28 profile image
RegBlunt28 in reply toPippins2

not sure about the meds

RegBlunt28 profile image
RegBlunt28 in reply toRegBlunt28

I walk a lot, & cry alot

LynnTenn profile image
LynnTenn in reply toPippins2

Those will definitely give you restless legs or make restless legs worse.I have found a hot soaking bath with epsom salt and lavender helps,as well as magnesium gel rubbed on my legs and lavender essential oil(undiluted) rubbed on the soles of my feet.Be sure that you keep magnesium and potassium in your system,as both aid in relaxation.

RegBlunt28 profile image
RegBlunt28 in reply toPippins2

I truly need my antidepresants, Zoloft.

RegBlunt28 profile image
RegBlunt28 in reply toPippins2

Zoloft

Just want to agree with what the other two have said and add hot baths help me. I found tramadol effective on the legs as all opioids are well for me anyway.

connie50 profile image
connie50

hi nightwalker welcome, I no what your talking about, I was taking repinarole but got augmentation really bad, so I had to go cold turkey it was horrible, the only thing that helped me was tramadol, I have found that this is the only thing that really helps me with my RLS. At first I suffered really bad with itching but this seems to have disappeared BUT I must stress it doesn't suit everyone, the only thing is to try it,& see for yourself, if that doesn't work try oxycodone my neuro gave me this, this also is a powerful drug that's used for RLS depending on were you live most GPS will not prescribe this, but it is quiet safe if its used in the correct manner,

in reply toconnie50

Hi connie50 - what dose of oxycodone did you use, (if you don't mind me asking)?

I am taking Targinact which has 40mg of oxycodone in it twice a day. It is meant to be an extended release preparation covering 12 hours however I don't think it lasts much more than 8hrs with me and I still have restlessness even when its meant to be at its peak. I wonder what levels the Drs will prescribe at?

connie50 profile image
connie50 in reply to

hi raffs I was taking 5mg capsules that's what the neuro gave me but it stopped working so (the neuro wrote to my GP saying if it stopped working to put me on oxynorm) my GP gave me oxynorm the liquid form to be taken at night 5mg &this worked for awhile, I am the sort of person that has to keep swapping & changing meds to get the best out of all meds, I think I have tried literary everything going for RLS its just a case of finding the one that suits you, up to know the tramadol is working for me, but some nights its a nightmare. Still get the occasional RLEGS but taking sleeping aids at the moment having a lot of trouble with sleep, got really bad insomnia

in reply toconnie50

Unfortunately I seem to have a big tolerance for the pain drugs, (with the dose I am on I would have thought I would be pain free and RLS free), and naturally Drs tend to be reluctant to push too high with opiates, and rightly so. Also a bit like yourself I have to swap and change and its a bloody nightmare.

I was maintained reasonably well on Tramadol for years but after it progressing into the arms and legs it is much MUCH more difficult to control. I am hoping, (against hope) that the meeting with the pain consultant will bare some fruit but have had too many disappointments over the years :(

The Dr mentioned the other day about being drug free which he does from time to time to get a good idea of what the RLS is like - one missed dose is enough to have me jumping and flailing like a dervish f**k knows how he expects me to do 6 weeks clear! I wish I could just for 1 day transfer my RLS to the people who treat me. I would love to see them rolling on the floor in agony at 5am and say to them yeah we need to see 6 weeks of that so we know things are bad!!! I have asked the other half to video me sometime I'm bouncing without me knowing. I think it would be a valuable insight to the Dr!

Thanks for getting back to me connie50.

connie50 profile image
connie50 in reply to

that's ok, I no just what you mean, I had to come of my meds because of augmentation it was a complete nightmare, but I did it with the help of pain relief, I no longer take dopamine drugs, I haven't taken them know for, it must be about 8wks or so, took tramadol,oxynorm,5mg (liquid form) in fact everything to take the dreaded RL away, have you wrote to DR B for advice he's given me plenty,he's very knowledgeable when it comes to RL legs keep in touch & let me no how you get on.

in reply toconnie50

Thanks connie50, I am sure I have asked this before but Dr B?

connie50 profile image
connie50 in reply to

can you finish what you were saying only it doesn't make any sense

in reply toconnie50

Who is Dr B?

connie50 profile image
connie50 in reply to

he is a famous DR in America that knows all about RL he as written several books about RLS is name is DR Mark Buchfuhre if you put is name in google search it will tell you all about him. he also as a web site they call it southern California RLS support group, if you need to contact him I have is email address he always gives you a reply,he's a smashing bloke, if you want to contact him just let me know I will give you his email address no problem let me no if you want it

in reply toconnie50

Can i just email him with my details and he'll offer advice? For free?!? If so he is an oddity in a grabbing world!

connie50 profile image
connie50 in reply to

yes you can & he always replies, might take a few days, because of the time difference, but he's always replied to me, if ever I've sent him an email.

in reply toconnie50

God connie50 that is great I have a pain Dr next week and I hopefully will have some good info, thanks a million.

connie50 profile image
connie50 in reply to

wot do you mean? do you mean you've got an appointment with a DR about your RLS or your going to a pain clinic. Print some stuff of to take with you to show the DR.

in reply toconnie50

Pain clinic - I have other pain issues and am hoping to draw up some plan that will allow the GP better freedom to shift between drugs and hopefully get them to understand the excruciating nature of the pain!

kitkat01 profile image
kitkat01 in reply to

No how u feel its shocking iv just been bk to my specialist e wont prescribe me any form of opiate drug even thou i told him i took 30/500 co codomol ( which i was givin by a friend cause i was desperate for pain to stop ) an said it worked he told me it would make pain worse ! So bk to friend it is😂😂

in reply tokitkat01

I think telling a Dr you got and used pills from a friend sends alarm bells ringing and they then become much more reluctant to prescribe - you've already shown a willingness to misuse prescribed medication!!!! (and believe it or not I am on your side even with that statement).

There are a number of things that interfere with the prescribing of opioids that ultimately end up causing much suffering for the person in pain :(

Lindy14 profile image
Lindy14 in reply toconnie50

Hi Connie, I fully agree with what you've said, but I'm writing to thank you for helping me find a solution to one of my problems.

I've had periods of itchy skin and blamed all sorts of things, including being convinced that I'd got bed bugs! Reading your reply to nightwalker made me think that our dear old friend RLS might be contributing.

Thanks again for including your account, it just shows that it is useful to have had personal experiences of the RLS.

Once again,

Thanks

connie50 profile image
connie50 in reply toLindy14

hi lindy14 yes if your taking tramadol it defiantly makes you itch did me anyway, for quiet a long time as well,couldn't get no sleep because of the itching,but for some unknown reason, all of a sudden the itching stopped, whether it was because I wasn't letting the 4hrs in-between I don't no but know I make sure I take it every 4hrs,i only take 2x50mg at night one at 6.0oclock then another about 10 .o'clock. Hope this helps

foogoo profile image
foogoo

Nightwalker, I don't have rls as bad as you by the sound of it but for what it's worth I've found the only thing that calms my rls consistently is tensing all my leg and foot muscles (one side at a time) really hard (as hard as I possibly can do it!) and holding it for 30 secs to a min. No idea if this will work for anyone else and I would be cautious because it's easy to get cramp doing this, but it's been a godsend for me and it's a simple no drug remedy. I can still sense the rls there after I do it but it's 80/90% reduced. Sometimes it takes one 'tense' to do the trick sometimes 2 or 3.

beady3 profile image
beady3

Hi night walker now you are on this forum you will be able to get good advice for rls,we all now about walking and walking about half the night but your doc can help ,go and chat to them ,I am with you tonight no sleep yet just pain and walking about same last night ,and I am on holiday ,good luck

connie50 profile image
connie50 in reply tobeady3

hi beady3 isn't the tramadol & the patch working for you anymore?

beady3 profile image
beady3 in reply toconnie50

Hi Connie had two bad nights and I hope that will be it, no I shallnt give up yet on my meds as it was going great hope just a blip,glad your getting on ok ,

connie50 profile image
connie50 in reply tobeady3

hope it was a blip, you do get them occasionally, the DR gave me some sleeping tablets to try & get me back to some sort of sleeping pattern so take one 50mg tramadol about 6.oclock then another at 10oclock along with the sleeping pill its great not getting up at silly hrs in a morning.

malcolm_one profile image
malcolm_one

My father took pramiraxil for years I'm a nurse and its taken a month to detox him, because he was getting agamentatiin. while starting gabapentin.

Finally he is starting to get 7 hours sleep a night after many adjustments of the doses and times.

Lindy14 profile image
Lindy14

Hi Nightwalker,

Welcome to the club, not that any of us would wish what we experience on anyone. I get some comfort from hearing of how other people deal with their RLS.

You can get some help from your GP. When I first got my symptoms my GP couldn't help me and told me to "look round for alternatives"! I did find several things that helped temporarily. I had found that my legs develop a mind of their own when they get hot, which is relatively frequently, and worse in bed. The thing I found most helpful was a machine that's operated by electricity and keeps the bed cool ALL NIGHT. Now, it doesn't work on its own, so I needed to go back to the GP. I saw another GP who also said he didn't know much about RLS so he referred me to a neurologist. She proves very helpful because her husband has RLS and she is on "the receiving end" at night.

She's been helping me experiment with different medicines, and although we reach a point where they inevitably become ineffective, she gets me through, exploring alternatives.

You should be able to get a referral to a neuro and on this page, you'll find ideas from other like-minded people who've had similar problems.

Keep in touch and let us know how you get on,

Kaarina profile image
KaarinaAdministrator in reply toLindy14

Hi Lindy

It is very useful for other RLS sufferers to hear about good/helpful neurologists. I wonder if you would be kind enough to let us know her name and where she is based.

Thanking you in anticipation. :)

Lindy14 profile image
Lindy14 in reply toKaarina

Hi Kaarina,

Thanks for your email. I agree, we can feel as though we're dealing with a lost cause at times.

I'd happily pass on my doctor's name, but feel that I should get her permission first. This may sound a bit "over the top", but as I mentioned some details of her personal life I should confirm that she is comfortable for them to be mentioned. Could you tell me where these details will be publicised please?

Thanks,

Lindy

Kaarina profile image
KaarinaAdministrator in reply toLindy14

Hi Lindy, I have sent you a PM. :)

jillypink profile image
jillypink

HI x I am one of the lucky ones who hasn't had to resort to medication yet.....I play my music-must be through headphones-and somehow the brain concentrates more on the music than the RLS and it calms down and eventually stops. This technique works for others too although I end up sleeping with headphones in all night and have a pattern on my face when I awake!! Ha ha

Adam_L_B profile image
Adam_L_B

If you are able go for a jog or run before sleeping. Maybe not an option for you and won't be for ever. However for now, it keeps it at bay

connie50 profile image
connie50 in reply toAdam_L_B

hi Adam L_ _ B I think it all depends on your self I used to go jogging every night after tea but o boy didn't I know about it after, my legs were all over the place couldn't settle,its the same if I have a drink (alcohol) only got to have a couple of lagers & lime & its all over,I could scream how I wish I could do theses things again but no chance.my legs wont let me, wanted to stay in bed this morning because I'm so tired but once again had to get up, because my legs are jumping, you must no once they start they wont stop until you get up & start walking about.

Adam_L_B profile image
Adam_L_B in reply toconnie50

Yes I think that with this condition, although there is commonality with symptoms, how and when they are experienced and what helps differs per individual

RegBlunt28 profile image
RegBlunt28

Thank you so much everyone, I have taken tramadole for about 3 nights its been good to me. I take 2 50mgs . What is Agmentation? Again thank you all

Night Walker

Kaarina profile image
KaarinaAdministrator in reply toRegBlunt28

Hi regblunt,

You can learn more about Augmentation here: rls-uk.org/#!treating-rls/czj2 scroll down the page a little.

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