Sick as a chip

Hi i am new to the forum and happy to see other people understand what it's like to have Rls. I have had it since I was a very little girl and I am now 27. It effects me everyday morning to night, I hardly sleep and feel like I have tried every home remedies and been on every medication you can think of and nothing has helped in the slightest. If anyone can give me any suggestions that have help them it will be greatly appreciated.

Thanks

Sorry I should of said I have been to the doctors and still under their care. I have tried the following

Pregabalin

Gabapentin

Nefopam

Naproxen

Amitriptyline

Paracetamol

Co codamol

Iburprofen

Codeine

ropinirole

And currently on rotigotine patches

I think they are running out of ideas.

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46 Replies

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  • Hi welcome it would be helpful if you could say what you have already tried and any meds you are taking for other conditions as many make RLS worse, .Also do you have a family history of RLS?Are you anaemic ?Have you had your Ferrartin iron tested.

  • Hi I am not taking any medication for anything other then Rls. I have tried cutting out caffeine, acupuncture, exercise etc. my mam used to get it when she was young but she grew out of it by th time she hit her 20s mine just got worse. I have been test for anemia and am fine and they test my iron regularly and its normal.

  • Which RLS meds have you tried? What are you taking for it now?

  • I have tried the following

    Pregabalin

    Gabapentin

    Nefopam

    Naproxen

    Amitriptyline

    Paracetamol

    Co codamol

    Iburprofen

    Codeine

    And currently on rotigotine patches

  • Okay well Paracetamol, Ibuprofen, Naproxen and Nefopam do not treat RLS.Pregablin/Gabapentin help some as do Co Codamol and Codeine although the amount of Codeine in Cocodamol is too little to be much use.Amitriptyline is poison to most of us and makes symptoms worse.Very often a combination of meds works best even when each of the meds don't work by themselves they work when taken together.For example I take 3 meds which taken in ones or twos work a little but together work 99 percent of the time.What is the strength of your patch? Are you under a Neurologist? If I was you I would ask for Tramadol and try it in combination with the Pregablin and maybe the patch but I want to know strength of your patch as too high a dose of it can cause augmentation which is a worsening of RLS x

  • They are only 1mg/24hrs and I am under a neurologists

  • Then i would try the combination above.

  • I have it so does my daughter and granddaughter who is only 19

  • Hi LJS 1988 sorry you are having probs the lack of sleep is the worst part of rls,I don't know what you have tryed so far but there is something that will help you not cure just help,go to your doc and chat to him. ,don't expect a miracle because there isn't one but there is help,good luck x

  • Thank you I thin the doctors are running out of ideas

  • You keep going there will be something for you ,what are you taking

  • Like you had the lot but for 18 months now I have been on Tramodol and it's the best I have been on ,I have had rls for 47 yrs and it doesn't get any better ,you will not get augmentation with these tabs x

  • Am going on to 21years, no one understands how much it hurts.

  • There are a lot of us that understand ,we all think why me at times but believe me there are really good people out there to talk to ,,I'm only new to ,but everyone seems to be there for each other because we all know what it's like how much it can hurt

  • Hi, Welcome to the clan. Have you asked your Doctor to try Rotigitine Patches, known as neupro patches. They work for me most of the time. Your Doctor will know of them.

  • I am on them now and they aren't working for me

  • Lots of ideas on here so hope something helps. Presume you have gone thro' dopamine agonists, Gabapentin, Tramadol etc. Found your triggers (spicy food, alcohol?). I have just found out potatoes are a major trigger for me! I found an RLS book worth reading as it put a lot into perspective and helped me know drugs and dosages. Good luck!

  • I have had all of them apart from tramadol for some reason. I know that some alcohols are a trigger for me but I don't often drink, so haven't found out a daily trigger.

  • Tramadol is an opiate but not addictive. 2x50mg at 8.00pm is my saviour as nothing else works. Insomnia is the only side effect for me but rather that than RLS!

  • Hi John, i'm curious about the book you mentioned. Can you give name/author? Thanks!

  • Restless Leg Syndrome by Buchfuhrer, Hening, Kushida of American Academy of Neurology. Hope it helps!

    Regards

    John

  • Thanks much! 👍

  • John, that is a GOOD book you got there. Anything that has the names Buchfuhrer and Hening will make for a good read when it comes to RLS. :)

  • Did your book help you find our your trigger potatoes?

  • No, my wife spotted the link between my worst nights and potatoes! Have yet to start a diary of food/ drink v. Symptoms.

  • Have you tried cutting down on sugar? In combination with the other things suggested. Seems to help a bit for me, but you can never be sure. I am 69 and have also had it since I was little. I just wish this forum had existed 50 years ago! Its a big help knowing about the kindred souls out there!

  • I don't have sugar in my tea but I am dieting after the Xmas so am sure I'll be cutting out some sugars there lol. Thank you

  • Don't forget there is lots of caffeine in normal tea and green tea! Decaff tea isn't that bad, and I have developed a taste for Rooibos tea and infusions too.

  • I have to agree my doctor is for sure running out of ideas for me have you tried opioids ? It's the only thing that get me thru my day.

  • What are opioids?

  • Welcome. You said your doctors are running out of ideas, have they ever put you on any medications? Over the counter meds do not work. So far RLS is at times considered related to Parkinson's and many of the meds for Parkinsons are used and are very helpful for some. Another thing you should know, all meds DO NOT WORK for everyone, you will have to go on trial and error to see which one works for you. Sort of like trying on shoes, keep trying them on till one fits! Lol. Pain killers work, again, for some but not for all. The more you read here on this forum, the more helpful suggestions you'll get. I just barely touched the tip of this problem, but here EVERYONE is more than willing to help. Oh, one more thing g, some meds can make you gain A LOT OF WEIGHT, one being Gabapentin, some get you addicted, some like the one I'm on has no side effects for me and others here on this page, but then AGAIN, it doesn't work for others. My med is a very mild opiate (pain killer) called TRAMADOL, I would suggest trying this med as its one of few that doesn't create augmentation, that's when the meds reach the end and don't help anymore and your symptoms become worse, then you have to find something else. Good luck, keep in touch.

  • I have tried the following

    Pregabalin

    Gabapentin

    Nefopam

    Naproxen

    Amitriptyline

    Paracetamol

    Co codamol

    Iburprofen

    Codeine

    And currently on rotigotine patches

  • I'm surprised they haven't put you on Requip or metopes. Those are usually what they try first.

  • I have been on these sadly don't work

  • Hi, you responded quickly. After I wrote I saw you had mentioned all the meds you had tried. You got good advice from others but ONE lady that I communicate with frequently, mentioned TRAMADOL. I also told you to try this med, I've been on it for almost 6 yrs now and I only increased the dose about 6 months ago. That's nothing considering the low dose. I take one 50 mg tab at 5:30 pm and another at 11:30 pm, my bed time. I sleep like a baby. The reason I had to add another pill is because I started to feel the RLS a bit earlier so I decided to add on and it turns out I did the right thing. The trick I found is to be ahead of an attack. Be that one step ahead so you never feel anything. If you do give it a try, start with just one pill before bed, but try to take it before you start feeling the RLS. Many know when it starts, mine was around 7:30 pm, very much on schedule, and then one day it started at around 5:30. It happened a few times so that's when I decided to add the 5:30 pm pill. I hope this works for you, but like someone else said, sometimes TRAMADOL with something else will work very well. Like Gabapentin + TRAMADOL, but try the TRAMADOL alone first and see how that goes. Let me know.

  • I have had success with magnesium malate and rhus toxicodendron both which can be ordered through amazon. I too have tried all the drugs you mentioned and the above two have helped more than anything. Best to you!

  • Try an anti-inflammtory diet. Work it out between a holistic nutritionist and your Doctor. Its helped others.

  • Kratom has been the magic bullet for me. It's the powdered leaf of the southeast Asian Kratom tree. I order it on the internet, and then put a half to a whole tsp. into a little orange juice, let it sit until the kratom dissolves in the orange juice, and then drink it. Over a 24 hour period I'll probably have a total of 4-5 teaspoons of kratom, in small doses.

    Kratom affects the same receptors that an opioid does, but is milder with less side effects. But even though it is milder, I wouldn't mix it with other strong medications, esp. not with another opioid, like tramadol. I don't know the best way of getting off the medications you are currently taking, but if you can, I think Kratom would definitely be worth a try.

    Good luck to you.

  • I started taking Tramadol for sciatica last year, and found it completely relieves the symptoms of RLS for me. I'm also on preglabin and naproxen for my back, and have found that a combination of preglabin and tramadol works well also. The only drawback with Tramadol is that if you stop taking it the RLS goes haywire, so I always have to be careful to ensure my supply doesn't run out.

  • For some reason tramadol is the only drug the doctors haven't offered me yet.

  • Hello everyone. I am new to this forum. I am 72 and have had RLS for a couple of years now, so lot less than most of you. I have Atrial Fibrillation (AF) and have been on Verapamil A calcium channel blocker for 3 years and I understand This can be a cause, does anyone have any experience of this?

    My GP has prescribed Pramipexole 0.088 mgm at night (a Dopamine agonist), which helps a little, however I have also been taking 50 mgms of Tramadol as well, which does the trick most nights. My main problem is sleepless nights as my RLS starts about an hour after I go to bed. I take regular exercise and follow a healthy diet, so not sure what else can be done. I have had blood tests and my Vitamin B12 was low, and my GP said this might be a contributing factor so I have been taking a supplement and hope that this will also be helping.

  • Does everyone just get them at night time or do you's get them through the day as well??

  • I have had RLS on & off most of my life, can remember having it at 8 or 9 years old, during the day, mostly. l'm now 68 and have finally found Sifrol (Pramipexole) 3x day, an iron supplement & Magnessium capsules @ night give me 95% relief. I envy people who can actually still still for more than 10 minutes!

  • I have my partners head done in at night with me moving around so much and staying up late. I hoped that it would ease as I got older but it's just getting worse.

  • Hi I have had RLS all my life and at 75 yrs old it just gets worse. Sorry, I may just be unlucky. I did try the patches but found as usual I just cannot cope with any dopamine type agent. I am now back on the good old clonazapam for about 6 months before I reach the dreaded augmentation once again. So, it will be back to the patches for a month of nausea and serious weight loss. Then, guess what, back to the clonazapam. My G.P. is sympathetic but at a loss as what to do next as I have other age related problems she is trying to deal with. Currently I am under a Cardiologist, Dermatologist and the Neurologist. May I suggest you try the Clonazapam starting with one table at night and only increasing by half a tablet when you absolutely have to, until you reach the maximum of 4. It may give you a few months respite. Wish I could be more helpful. I do truly feel for you.

    Regards

    Dojen

  • Thanks very much for your help I was hoping it would ease as I got older but it has just got worse. Luckily I have a neurologist that understands and has researched it, but I am stil on trial and error. Currently I seem to be getting just as bad during the day where it is affecting driving and work. Eventually something has to work surely.

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