Hi - I have joined on behalf of my Mum and am looking for any advice on what meds/supplements in the UK that might help ease the symtoms?

[Poppysgirl]

Mum has just had her 3rd night with virtually NO sleep, it's definitely RLS according to the symptom checker thingy on RLSUK website. She has suffered with this on and off for many years, and like a lot of you by the sound of it, it is getting worse. GP's don't seem to have a clue what to suggest to help her. I feel so helpless too, and my poor Mum feels near the end of her tether with it ...... she is 76 and has real bad arthritis (osteo, rheumatoid, and osteo porosis) which I have read may be linked to RLS.

[nightdancer]

Good grief more doctors whi need a clue. It never goes smoothly 2/3 of the time. Anyway, hi, and I from the US, but I spend time with people with RLS from yor side of the pond a LOT. quick list of meds and a web site. They will probably be able to expand. But, we have people here using the Neupro patch, Mirapexin, and Ropinerole. Those are dopamine agonists, also used for the treatment of Parkinson's. Does not mean she will get PD, but people with PD get RLS. Gabapentin, which is in the class of anticonvulsants, and that is used for RLS and nerve pain. There are extended relief tablets for the PD meds., also I believe, in all of them, but don;t quote me on that.

rlshelp.org is the absolute best web site for information. He is a neurologist who I communicate with all the time, and is medical advisor to the Board at the US RLS Foundation. Go to the treatment page, you will see all the meds,a nd what they do and why. Especially read the part about iron and Ferritin (your body stores Ferritin in your skeletal system and liver), and that # shows if your body is storing iron correctly. Does your mother have any kidney issues? That is another clue, too. RLS sure does get worse, and I can talk about thatv all day.

But, the info on that web site is the best. also make sure to see the list of" drugs and foods to avoid". That is really important, too.

[johnw2611 in reply to nightdancer]

To nightdancer: I agree with all you say here. What do you think of the book 'Restless Legs Syndrome' by Wayne Hening and others, published in 2009 by Saunders/Elsevierhealth.com? It is bigger and more comprehensive than the previous pocket-size book published in 2007. I'm sure you will have seen it.

[nightdancer in reply to johnw2611]

IT is golden,. Anything Wayne Hening wrote is accurate and correct. also, see other books on Amazon.com that he wrote with Dr. Mark Buchfuhrer-Clinical Managemenet of Restless Legs Syndrome. That is the more detailed book, while there is a "patient directed book" that they also wrote, I HIGHLY suggest the Clinical one. Way more info, and your doctor may be more willing to read a "clinical" book.

[Hidden]

hi, My mother had rls very bad also, we asked the doctor about these med's for rls, but he would'nt let my mother have any, she was in the early stages of altzhiemers (sp) and some of these meds cause hallucinations, so be wary.

[nightdancer in reply to Hidden]

only cause hallucinations at the higher doses, though beng elderly, one has to be careful. I know hundreds usin those meds, and have only heard a few hallucination stories. Just because a side effect is listed does not mean that it will defintely happen. YOur mother needs her sleep. There are other meds to try other than the dopamine ones. rlshlep.org -go to treatment page.

[eileen49]

Nightdancer - you mentioned kidneys - how does this relate to us as I have just had a heomorage and kidney infecton and I did not relate this to RLS till you said that. Am I overdoing it on the meds do you think ?

[nightdancer in reply to eileen49]

no, no, no....... Only in patients with kidney failure does RLS show up in more cases of it. Usually during dyalisis. no problem. But, alsywas good as a general rule, it is good to get your kidny functions checked once in a while, and especially, live enzymes, too.

[nightdancer in reply to nightdancer]

That would be "liver enzymes" LOL

[Hidden]

My Mother who is 92 has very much the same problems as your Mum. I believe she takes quinine sulphate when it gets bad, but is not on any regular medication for the problem.

Although the amount of drugs she takes for various things including osteoporosis even confuses me. I suspect it can be difficult to add other drugs to a daily regime of medication when one does not know what other problems may be caused, and again when somone so infirm has many medical problems, I fear the doctors (Who in mums case seem quite good) just do not want to add another to the list.

[nightdancer in reply to Hidden]

We have posts about Quinine all over the place. I am from the US, and all Quinine has been pulled from the market and ove the counter meds, and the FDA put a warning on it to be used only for treating malaria, because of heart issues. It is banned from over the counter sales here, and several companies had to reformulate their OTC meds. vety STRONG warning.

[dangermouse]

Poopysgirl - your poor mum, and poor you too, watching her suffer. Three nights in a row with no sleep -I know what that's like too.

I'm very lucky in that I have a GP who, when told my symptoms, looked RLS up on the internet and agreed with me that I could try Gabapentin. [I'd already told him about it!].

It's working -I take 2 pills about 2 hours before I go to bed and although the tingling feet are still in evidence it doesn't progress to my legs. I also have given up caffeine and drink plenty of tonic water for the quinine.

Some GPs appear not to have read any literature on new complaints and treatments since they qualified. Change your GP or ask for a second opinion?

[Hidden in reply to dangermouse]

Dangermouse..you said "Poopysgirl"..Chuckles..

gotta love that.. haha.

[Poppysgirl]

Hi - thanks to all for your answers and advice, it gives me a direction and also some options too!! Thanks and I will post again if I get stuck, or if we find a miracle cure!!!

Poppysgirl x

[Martyr2mylegs]

Hi there, I would try the eating early in the day idea along with no alcohol or caffeine for a start. Maybe the gluten free option could help as well?

Yours hopefully,

Martyr2mylegs

[dangermouse]

Sorry for 'poopysgirl" -I've obviously got restless fingers syndrome as well!

[Hidden in reply to dangermouse]

im sure you dont need to say sorry for a spelling mistake dangermouse !!

[Poppysgirl in reply to dangermouse]

Hahaa! Funny - I didn't even notice!! Restless eye syndrome??

[johnw2611]

So sorry to hear about your mother - with serious Arthritis to contend with too, RLS is the worst thing possible to have as well. If your doctor is in an NHS Group Practice, ask a receptionist if any of the other doctors has particular knowledge/experience of RLS. Regardless of which doctor you are officially registered with, you are free to see any other in that surgery and there might well be a better doctor available for RLS help. The most effective drugs for most people seem to be Pramipexole and Ropinerole (UK names) and Gabapentin is also very effective (works from day one). All these drugs should be freely available on prescription in most NHS regions. If you stay with the same GP he needs educating! He may not be very receptive of this, but there is a really excellent book available from Amazon or elsewhere, written primarily for doctors, which sets out clearly and in detail all you could wish to know about RLS symptoms, appropriate drugs and general management: "Restless Legs Syndrome" by Wayne Hening and others (published 2009). ISBN No: 978-0-7506-7518-5 H/B priced around £20. It might also be available through your Library (look under Neurology).

[nightdancer in reply to johnw2611]

"Clinical Management of Restless Legs Syndrome" is the one a doctor would like to see the most, I imagine. That is DR. Hening's and Dr. Buchfuhrer's book. studies and graphs and all kinds of info how to treat RLS in doctor terms.

[garvey]

I have started taking ordinary magnesium tablets, 250 mg, and they seem to work - best taken early evening. I can't swallow big tablets so break them in half.