RLS

[Grassy58]

I just want to ask about medication for RLS. This issue is driving me insane I don't just have it in my leg I have it everywhere.

[Madlegs1]

Are you on any medication at present?

Has this just come on or how long have you had this experience?

What changed in your life to bring this about?

We need a lot of information before we can even attempt to help you.

Cheers.

[Grassy58 in reply to Madlegs1]

Medication: Rosuvastatin 5mg, Asprin, magnesium, vitamin D, Temazepam, take it from time to time.

This problem has been gradual over the years, it has come to the point it's all over my body now and more frequent in the last Six months. This only happened during the night but now it has crept in during the day 😩😩😩😩 Also Borderline diabetic in the last two years.

I'm not sure what has changed, but I had an amputation of my leg at the age of 20 I am now 58. I have had a bit of stress in the last year but not to the point I couldn't cope.

I appreciate all the information I can get thank you so much 😊

[eddied in reply to Grassy58]

Hi, sorry to hear about your struggles. It is maddening to say the least. A sleep disorder specialist here in USA, put me on Mirtazapine 15mg, and Ropinirole (Requip), and it has worked now for 6 months. Prior to that, there were many sleepless nights caused from "The Pullies" driving me crazy. Best of luck to you.

[Grammieof4 in reply to eddied]

Where are you in the US? I am in Baltimore and see Dr. Christopher Early at Hopkins.

[eddied in reply to Grammieof4]

Grammy 12, I am in Portland, Oregon. Hope you are winning the "fight".

[Madlegs1 in reply to Grassy58]

Hi Grassy- what you describe is very like augmentation - but as far as I can see, none of the meds you are on would bring that about. Stress is certainly a factor but the Temazepam should help there- and not aggravate the rls.

The Rosuvastatin certainly will cause rls- you could talk to your Dr about changing to a more rls friendly med, or even a natural plant based route?

There is a list of medicines to take or avoid on this site

rls-uk.org

Which may be printed and shown to your Dr.

The other possibility is that you have taken a trigger substance- if you can think back to when it started - such things as alcohol, rising agents , sulphites and a host more. A food diary can be helpful.

You could also email Dr Buchfurer on "rlshelp.org" who is a world expert. Give him all your history and med details.

Hope this is some help.

Cheers.

[Grassy58 in reply to Madlegs1]

Hi medleys1

Gee I thought I would be finding it hard to get any information about this, it's great and I'm grateful for all this information thank you so much

Regards Grassy

[mrpenguin]

I had restless leg for about a year from Oct 2014 till Sep 2015.. Pushed me to the edge. Your sleep is completely destroyed, you get angry, you are laying there but that horrible sensation is there and you just cannot go to sleep. Even when you do you're waking up every 1 - 2 hours and having to get up.

I got rid of it completely up till a few weeks ago when it returned.

Last time I suspected it was B12 deficiency so I bought a strong B multi from NB which said on the bottle it was only safe to use for a short period (30 days).. I did the 30 days and the RLS stopped long before that and hadn't returned until a few weeks ago. So I'm going to do the same again.

In the meantime I was desperate for relief last night so I broke open a peppermint oil softgel and rubbed it on the worst foot & to my surprise the horrible sensation stopped You can still feel that the RSL is present but there's no horrible sensation! So I was able to sleep finally.

Maybe you should look into B12.

[Grassy58 in reply to mrpenguin]

Funny you say that I took vitamin B today it will see how I go tonight but I will get some B12 next week thanks for that information

[kittykat66]

hi...ive suffered from this dreadful condition for over 20yrs...started only in my legs...now my arms hips shoulders and head...think they have tried me on every known medication some made it worse others did nothing..in the last few months its started happening through the day...iys not just the restlessness or feeling like you have a million biting ants inside you but pain to...i really hope you find something that helps you all..hopefully this documentary on Tues will at least be something we can ask our gps to look at as more often than not..they just don't understand 😐

[eddied in reply to kittykat66]

The documentary that is mentioned ; is it BBC, or what ? Do you know if is available in the USA, thanks for any info.

[Hidden in reply to eddied]

eddied, the documentary on RLS, has a few posts and comments on here for what its called to when its on and how you can watch it while living in the USA. You just need to scroll through some posts.

[Flgal43]

I've had RLS since I was a small child (I'm 74 now!). I have been on every medication known to man...some helped for a little while...and then augmentation set in and the RLS was worse than ever. I, too, have it everywhere. It started in my legs, then moved to my arms, neck, head, trunk. It is maddening. I am now on oxycontin for a severe back problem, and it is the only thing that has helped with the RLS. I hate taking stuff that is addictive...but it works. And I'm at the point where anything that works...I'm trying, addiction be damned. I keep the dose as low as possible (5 mg a.m. and p.m.) and it ensures that I finally can sleep through the night most times. I hope you find something that eases your misery. You have my sympathy.

[Nita7 in reply to Flgal43]

I agree about the 'addiction'. I was listening to a US radio program podcast, Extreme Health radio. They are talking about a video 'Run from the cure' by Rick Simpson. It explains about cannabis oil which cures some cancers and even helped a few ms patients and also helped people with arthritis. I struggle with fibromyalgia and sometimes rls, if this would help, I would really not worry about addiction.

Be strong dear friend and do not worry about additction, because addiction comes in many forms, not only medication which is necessary to cope in your everyday life.

[Grassy58 in reply to Nita7]

thanks for your info this is awesome I feel I have friends as well as help in this situation.

[Burtie147 in reply to Grassy58]

I am going to try smoking weed tonight. My rls is now bouncing my leg so bad I can't walk when it happens mostly in the evening. Wish me luck and I certainly wouldn't condone this strategy normally.

[involuntarydancer in reply to Burtie147]

I hope it works for you - don't be too disappointed if it doesn't - it works for some but not for others. If you are prepared to experiment with the drugs from the 'dark side' would you consider kratom? It seems to be more reliably effective in dealing with rls symptoms.

Do you take any other medications? Also have you checked to make sure that you are not inadvertently taking a drug or food that is making symptoms worse.

[Grassy58 in reply to Flgal43]

lets hope they find something. I was on patches to give up cigarettes and I noticed that made me worse so gave them up but not the cigs I don't smoke that much and here I am worried about addiction to medication....crazy

[Trampleigh]

I take gabapetin and have a leg massage every 3weeks. Apart from one relapse I have been off the alcohol for a month. I sometimes think salt peter might help. See you. Trampleigh.

[Lilyshot]

I've suffered RLS for 25 years. My father had it, and had only all-night hot baths to fight through to the next day. My daughter was diagnosed when she was in law school.

I did a university medical program sleep study three years ago. Because I'd been on Carbidopa/Levodopa for so long, it had not only stopped working, but had augmented, meaning it was making my RLS worse. Worse? I'd cried for years through the night in pain, tired, and not being able to sit or lay down...you know the story. A week before my scheduled overnight sleep study, the doctor prescribed Gabapentin, and then I slept through the night of the study, even with all the Borg-like wired attached to my body. I knew that I was on to something! Hope was on the horizon!

My RLS enemies: humid weather conditions, summer (heat is heck), changing of the seasons, bodies of water (lakes, rivers, streams, San Francisco Bay ☹️, and all the world's oceans), rain, late afternoon, evening and night. Dosage of Gabapentin 100 mg, 300 mg and/or 600 mg is up to me. I begin Gabapentin 300 at about 3:00 p.m. (doctor thought I should start in the morning, but I'm already too groggy then because of the RLS night meds), and, too, I must stay very aware of my body's signals.

So, between Gabapentin (slow and steady), Carbidopa (works fast but has limited staying power) amd Mirapex (takes awhile to kick in, but means business), and a really hot bath right before bedtime, RLS doesn't own me anymore. RLS predictably gets worse with age, but I figure that treatment will get better and better. It's tricky to find medical professionals who will take the time to listen, to appreciate the exhaustion and exasperation of an RLS sufferer, to develop a protocol for an individual patient, and to acknowledge that her/his RLS will not be static. It's not hopeless. You are your best advocate.

[nightdancer]

rls-uk.org got the foudation's web site to see what meds are used and also ones to be avoided

[legbetter]

i cured my restless legs after 30+ years. I took one vitamin b12 tablet and one folic acid tablet daiy. three days later i'm cured. I stop taking them and my restless leg comes back. I've proved this many times and it DOES work. x

[Burtie147]

Pramipexole worked for me. Side effect after long term use is increased libido. U have been warned but it definitely helped with restlessness.