So many helpful and supportive comments and information re RLS. but so many differing ideas as to what works and what doesn't work to relieve symptoms.
Drugs or no drugs ?
Dairy or no dairy?
Alcohol or no alcohol?
Caffeine or no caffeine?
Vitamin B12, D, supplements or not?
and many more.
All of which are helpful and worthy of investigation, and helpful to the individual sufferer.
Does any one know of any research past, present or envisaged, by medical professionals?Or any funding that might be available, or any organisation worth approaching?
Does any one have any suggestions as to who to approach, or how to approach the NHS to help raise awareness of the need for at minimum a data base of symptoms and outcomes of treatment given ?
There's a lot there to consider, but hey,....I've got all night !
Look forward to and value any suggestions... Nightshift
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nightshift
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NHS, has their NHS Choices website, which gives RLS symptoms, treatments, medications. I dont think anyone can give outcomes of treatment, because all of them affect people differently.
As for the rest i wouldnt know who is doing funding, research etc etc...The RLS-UK website may have more information on those.
One very positive thing use the changing of the name. It is felt that people make jokes about RLS and do not see the very serious nature of it and how it affects all of our lives. Maybe with a name chane that is the beginning of better and more research!
Not sure where you are located but I am in Canada and I know in the U.S. people don't take it seriously enough. Basically most funding naturally goes to life threatening disease and up until around late 1998 or 2000. It really didn't even have the name RLS at least here in Canada. everyone just said they had growing pains or jumpy legs. So it is only in the last decade that it has even been recognized as a disease. They are only now starting to really take it seriously because it has a high suicide rate.
The new name for RLS is Willis-Ekbom disease and I believe it is name after the doctor who first diagnosed it. They changed the name because it wasn't being taken seriously. In the U.S. it already goes by that name.
You wouldn't tell them you have WE'D you tell them you Have Willis Ekbom disease no if fervent than people who have Lou Garrig disease or any other such named disease or syndrome. The web site is still under The National Restless Leg Syndrome that is located in the United States. I am just glad that there is a foundation now and people ARE starting to take it seriously!!
It is I believe located in North Carolina and the Canadian RLS is affiliated and is located in Vancouver or Victoria Canada. They always have the latest info and when ou go to the rls.org it describes why the name change etc. you can find it by simply googling RLS foundation
same thing i thought you were talking about then, and im allready aware of this site.
But i dont think we are changing the name over here, at least not yet, and i personally hope they never do, unless they just change the "syndrome" to disease.
Believe me, nobody takes RLS more seriously than me. I have it not only in my legs and arms but also my back. I was put on a medication (mirapex) that caused severe OCD and I lost over $50,000. gambling compulsively before the drug co. Admitted that obsessive impulsiveness particularly related to sex and gambling is a drug side affect. I am now involved in a major canada wide lawsuit pertaining to that. I was then put on the fentanyl patch (which is 100 times stronger than morphine) where I became so depressive and suicidal I very nearly took my own life. So yes RLS is an extreme part of my life. I cannot be without meds because it would be so bad I would not be able to tolerate it. I m now back on mirapex the gambling drug but my son literally controls my money and I see a psycologist on a weekly basis at $150. an hour that my son pays for so anything I know or find out about RLS is extremely extremely important to me. I have battled Stage 3 Breast Cancer and double mastectomies and won, I had a tramautic accident and lost partial use of my right arm and it left me with reflex sympathetic dystrophy which is extreme daily pain and due to a doctors negligence had two bowel resectionings. I survived all of them all I can tell you RLS is the worst!
well apart from the gambling, i have weight gain, we appear to have, or have had very similar problems, i also have very bad arthritis in my lower back and feet, not good with the RLS,
Dear nightshift, I know what you mean regarding to individual sufferers with their own cases
in addition to NHS, I also searched on natural remedies and ways of relief on RLS, it may not be much of a help but hope is something we all need to hold on with .
Over many years i have tried diet. health food supplements/ tablets the only things that work for me are perscription drugs. at the moment Ropinerole. if iam having a really bad night and tabs are not working i resort to co codamol to get to sleep.
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