RLS: I developed RLS five yrs ago... - Restless Legs Syn...

Restless Legs Syndrome

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I developed RLS five yrs ago starting in my legs and eventually travelled all over my body. Unlike some people I donot have any pain but just that awful indescribable felling of anxiety and the need to move uncontrollably to satisfy the wretched feeling. After going to a neurologist and being put on Neurontin, all the medication did was make me gain twenty five lbs. in one and a half month. Feeling very unconfortable with the weight gain I weened myself from the medication and found a different solution. After searching in the internet I found many people that also didn't like Neurontin but found TRAMADOL, a non opiate pain killer works miracles. One pill, lowest dose and all the RLS disappears like magic. I have been takin my TRAMADOL now for almost five yrs. and have helped many others with this advice. I urge all that read this to try the TRAMADOL, for me it's been the miracle pill and many people have been using it since its been logged on other web sites. I hope this helps some but I wish all because only us who have this RLS know how terrible this is. Now I can actually go to the movies or take long car or air travel trips. Just another note, the TRAMADOL takes about an hr. to kick in but it lasts almost eight hrs or more. When you wake up and start moving you won't need any more pills till bedtime. Good luck to all.

23 Replies

Hi I'm really pleased you have found something that works for you. Your life must be transformed. can you tell what dose of Tramadol you take?

johannasuar in reply to Jumpey

Hi Jumpey, I take 50mg. pills. One is enough for the whole night since TRAMADOL usually lasts six to eight hrs. and by that time it's morning and I'm on my way to take on the day refreshed from a restful nights sleep. I HAVE been very lucky to have found this pill that works sooooo well for me, but I'm sad to say that some have written that it did not for them. If you do try it I wish you all the luck in the world. My pharmacist asked me why I took so much TRAMADOL and when I told her it was for RLS, she was so excited and asked me many questions because it turned out her mother has had it for five years and hasn't taken anything and was on the verge of a nervous breakdown because of the RLS. She told her mother who now takes it every night and has finally found restful piece after five yrs. of enduring the agony of RLS. Good luck if you choose to try it.

Jumpey in reply to johannasuar

Thank you so much for getting back to me and for your good wishes-they are much appreciated.

I hope it stays ''not painful''. I was about 35 years old when I had RLS the first time. I knew vaguely that it ran in my mom's family and the older sisters reported pain with the urge to move. The condition progressed and today at age 78 when I have a period where nothing but narcotics will quite it down, I have pain all over my body. The long bone pain is the worst. You cannot find one sore spot that is the source of pain, you just hurt all over. I shake and move like a person with Tourette's Syndrome. Good luck

Wind walker, how awful what you are going through, I trully feel for you. I have read of so many people with the pain but I have been lucky to have not had any. I too heard that it is hereditary but I don't know of anyone in my family that has it unless they keep quiet thinking they're crazy like I thought when I first started THE feeling. You well know as all of us with RLS how hard it's to explain and not have people think you're off the wall. I hope I don't end up in my later years with the terrible pain you have but only time will tell. I also run around like a lunatic, dance, do crazy looking movements, punch imaginary punching bags, ANYTHING to aliviate the wretched feeling when I don't catch it in time with the TRAMADOL, then my crazy workout lasts about an hr. till the pill kicks in. I wish you well.

The heredity factor is well known among the Medical community and those who researched the condition. Almost every person in Iceland is a descendant of the 11 families who settled the Island. At least one had RLS and over time they all do. In America there are two isolated pockets where civilization was halted for 250 years. Cajuns in the swamps of Louisiana and Apalachians from the Plateau (mountains) regions had an ancestor who spread the disease and French Canadians with roots in the province of Quebec, for 200 years, are the localized sufferers with 90% as carriers or the actual disease.

The origin is from Eastern European Jews who migrated far and wide and spread their genes to all of us. For every condition there is an originator scientists call Lucy. Lucy had the Mutation and from one Mutation the DNA was like water leaking in all directions.

I had Jewish ancestors as well as Apalachian Plateau ancestors. My mother had 9 sisters and they all had the condition and all lived to be between 90 and 106 years old.

It doesn't kill you, it just makes you wish it would. lol

Hi, I am taking Pramipexole and co codamol at the moment but would like to give Tramadol a try. What dose of tablet do you take?

johannasuar in reply to jeanjack

Hi Jeanjack, I take 50mg. PILLS. I emphasize PILL because they are not tablets or capsules. It's rather small and so far I have gotten round ones and oval in size. I don't know if it comes in higher msg. What I also like about TRAMADOL aside from the releaf from RLS, is that it has ZERO side effects, doesn't hurt in an empty stomach though I prefer to have some food in it, and you wake up totally clear headed. Give it a try and let me know if it was successful for you.

Hi ,I am very pleased that Tramadol is working so well for you.It is a med that helps many RLS suffererx but sadly does not work for me.Just wanted to add it is actually a synthetic opiate,listed as stronger than Codeine but not as strong as Morphine so sort of between the two,It is a class c controlled med as from June 2014 ,Therefore it needs the extra signature at the pharmacy.Many of the experts now prefer to treat with pain meds and anticonvulsants rather than the Dopamine agonists.If Tramadol worked for me I would definitely use it,Please note that augmentation has occurred with Tramadol use,particularly prolonged use but this is very rare,much less than with the Dopamines.Thanks for sharing a good experience ....Pipps

johannasuar in reply to Pippins2

Hi Pipps. Yes, I was informed by my pharmacist that TRAMADOL was now being considered an opiate and would be strictly controlled, however, I always needed a prescription no matter what it was considered, it was never an over the counter med. I'm sorry it never worked for you but you did bring up a point which I had thought of but never followed up on, does TRAMADOL need to be augmented within prolonged use. That scares me a little though it hasn't happened to me yet and I have been taking it for five years. if you hear more please share the info. How many times can you increase the dose? The mystery is there and I hope I will never have to cross that bridge. Good luck to you with whatever medicine helps you.

Do you take immediate release or extended release tramadol? I know that "Ms. Beady" takes it too and had a little trouble with getting her dose regulated but I believe she is doing better now? I would like to consider it again possibly? BTW, is constipation an issues with it as is with most any pain med?

johannasuar in reply to pjmccoy1

Hi. I take just ONE 50mg. pill. I don't know if it's considered extended release but it lasts six to eight hrs. at which time it's morning and my day begins so I'm in constant movement and as long as I am busy I do not feel the RLS.

If you have tried it before you will not loose anything trying it again. I wish you luck and hope it works for you.


You are lucky to just be able to take one 50mg Tramadol and its enough for you. One does not help my RLS at night, and two of them, made me violently sick in the early hrs. I am now taking one 50mg Tramadol + one Tramacet (thats is a lower dose of Tramadol) and even those do not let me sleep through the night.

Hidden in reply to Hidden

I think that over time the dosage will need to be increased.. it seems like it doesn't take very long before the medicine stops knocking people out for forced sleep.. or it will not last as long.. I don't think that doctors fully understand that RLS is the need to move the legs yet and not pain so they just do not investigate it further and assume it's RLS.

We have to keep getting the word out about what RLS's criteria is to get doctors to classify it correctly. XX Karen

johannasuar in reply to Hidden

I total y agree Karen. The problem is how to describe a feeling, a feeling that is so strange it has no words. I for one DO NOT have pain like others, but that wretched need to move and move till the TRAMADOL kicks in is intolerable and indescribable. I am afraid when my time cones to increase my dose of 50mgs. because how far and how strong a dose will be needed, how much can be taken? Let's keep getting the word out as you say. Thanks for your input, being on this page has given me relief even if it's because misery loves company or because everyone here are the only people that can understand me. thanks to all.

Pippins2 in reply to johannasuar

The maximum daily dose for Tramadol is 400mg,if you are over 65 years old it is 300mg.This is the dosage for pain relief ,I do not know if it is the same for RLS

hey johannasuar, i just read one of your rls posts from a few months back. i may have posted this before ( my memory is short termed. ) i can type this post easier than i can go back and look and see if i have. i to don"t have any pain with rls either, however my rls attacks me in my legs, mid section and from arm to arm going across my chest. the arm to arm thru my chest is the worst. is this the same for u also??? oldblue

johannasuar in reply to oldblue

Hi oldblue, I don't have any pain either, many like myself profess that real RLS is pain free but many say they have terrible leg pain. I have it in my legs and when I take my meds late and it sets in, I also get it in my arms, but NO PAIN. I never heard of anyone with it on their chest. How do you get relief on the chest? I mean when I get it on my legs and arms I just move about like a lunatic swinging my arms high, cross wise, up and down like doing jumping jacks while I walk, jump, do anything to keep me in motion till my pills kick in. Johanna

hi johanna, when i get rls in my arms it seems to go across my chest at the same time. the walking ( sometimes fast ) boxing etc: is the only way until my med. kicks in also. oldblue

johannasuar in reply to oldblue

Hi oldblue. I'm glad you can find some relief with the boxing motions, I do that too and ANYTHING that give my arms hard jerky movement, the walking is fine for the legs, it just gets a bit tireing after a couple of hrs. Sometimes I just watch tv standing up.

On another note, I think I've guided you as best as I could about medications and their consequences but it gets me when someone writes back to ME sort of contradicting me and then repeating everything I just said to you. Oh well, I just want to say to be careful and get as much info on ANY medication your doctor wants to try on you. Remember, some, like Gabapentin make you gain tons of weight, others have to be weaned from if they don't work, and others just don't plain work! Be cautious, this is a disease that will never go away and some meds are so easy to get hooked on. Someone mentioned that Tramadol is not so much addictive as it makes you dependent, I don't know, I am not dependent on it because I only use it at night for the RLS , I see here that some people have RLS all day which is questionable to me. RLS is mostly in the night when trying to rest or when sitting for long periods of time. As long as I move during the day I have no need for medication. I'm not a couch potato, maybe those people that have it all day just don't move maybe from other problems that make it hard to be mobil. I hope I have helped you. Till later, Johanna.

hi johanna. just saw where you replied back. i get the quivers just about every time i'am mobile. i stayed inside majority of the day and sister has it been on ( rained here all day ). the Neurologist i'am going to see is 200 miles away round trip. i've ran and boxed there probably 2 times today. i was wondering, sometiimes after i take a pain pill my ears stop up every time i inhale and also pops. this only lasts for a couple mins. have you or heard of any one experiencing that???? later, oldblue

johannasuar in reply to oldblue

Hi oldblue, I personally have never heard of anyone with that problem, but it seems like it's something that could happen because of the effect of the pills contents. I'm not sure if I'm explaining myself very well. Maybe the pain killer also numbs something in your ears, make sure you mention that to the doctor specially since you're taking such a long trip to see him/ her, write down EVERYTHING you feel with the meds so you don't forget, that's very far to see a doctor. Good luck, let me know what doctor said and suggested. Be safe, Johanna

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