Epidemic

[nick-the-turk]

Epidemic !!!Hi all it’s been a while since I’ve posted or indeed replied to a post but I do read every few days but life has been hectic lately for lots of different reasons including one to help with my RLS. I’m shocked that more and more people not only on here but whilst talking to other people have RLS or symptoms of RLS who’s not been diagnosed ! and we are still a long way away from a cure sleep deprivation is a big thing now and we all suffer from lack of sleep about time it came under the word epidemic

[Joolsg]

Great to hear from you again Nick. I really hope that you are still managing with the pregabalin. But you’re absolutely right- every day there’s someone on this site desperate for help and getting no adequate response from their doctors.

So not only an epidemic of sleeplessness, but also an epidemic of ignorance.

Education is an absolute priority- not sure how we set about changing the mind set of the older generation of GPs and neurologists, but hopefully the new generation are more willing to listen and learn!

Hope you’re getting a great tan walking about in this weather.

[nick-the-turk in reply to Joolsg]

Tan is late this year not had to much sun as to yet But coming good after the last few days thanks

[Parminter in reply to Joolsg]

Well said, Joolsg -

'epidemic of ignorance' is perfect, at the centre of the heart-breaking posts we read every day, and which we should not have to read.

A post a few days ago nailed the problem in the medical profession - CatoG was lucky enough to have an appointment with Doctor William Ondo (you replied). For me this highlights the fact that only a tiny percentage of medical doctors still do original research, and I wonder how many even read in an age when going to a free lunch-lecture given by a pharmaceutical company is sufficient to give them CME points.

Doctors Willis and Ekbom would not recognise their profession any more.

There is a huge body of literature easily available on the web, but we are the only ones who read it - or so it seems.

[Hidden]

Hi Nick, I think the correct term might be "endemic" rather than epidemic. Epidemics come and go, RLS is just there! It doesn't seem as if it's going to go.

[Hidden]

Hi Nick, good to hear from you. This is just one group of people who suffer with RLS, on Facebook, there are groups with 1,000's of members who all suffer. And like this group, new members appear everyday. Hope you are still doing ok with your RLS.

[nick-the-turk in reply to Hidden]

Yes thank you still ok have bad times but from where I was before to now it’s tolerable JUST

[Hidden]

Unfortunately it seems nothing works 100% all the time. Glad you are still doing okish, to where you were. We are here if you need us for any help.

[nick-the-turk in reply to Hidden]

That was what got me through the bad time was the help love and support from here a big RESPECT to you all

[involuntarydancer]

The more of us who crawl out of the woodwork to support and educate each other and raise our voices in a united cry for better treatment, the better our prospects. Eventually our message will seep through to the medical community.

Dare I say things are already better than four or five years ago? Now there is the occasional report of a doctor who voluntarily suggests checking serum ferritin or who starts treatment with gabapentin rather than a dopamine agonist. Unheard of even a few years ago.

[restlessstoz]

What we need is a famous person, film star or royal etc. who suffers from RL to bring it to the attention of the powers that be and fund raise for research. Even better (not really) is if that said person died as a result of RL stress! Then it would definitely reach the populace and people may sit up and listen. It's certainly helped in Australia with breast cancer, when a famous cricketer's wife died of breast cancer. Brought it right to the forefront of the media. Now they are forever fundraising for it. I pity those who have ovarian cancer though, as they are definitely the poor relation! AS for RL, forget it! NO one knows how much we suffer and the medical world don't even sit up and take notice.

I must say however that my GP is a star and has been very supportive and helpful and will read what I give him, prescribe what I suggest (within his power and the law), and refers me to whomever I suggest. But then, he's seen me at my absolute wits end in the midst of a RL attack due to augmentation. He was really shaken!

Apart from genetically triggered RL, I do wonder whether there's something in the more processed diet related to the apparent increase in RL, Poor diet, unhealthy gut which leads to poor absorption of iron and other nutrients necessary for RL 'prevention'. I certainly can vouch for an improvement in my symptoms with a diet that restricts certain things... and my diet was healthy and didn't contain much processed foods to start with! Also, I think there just are more people turning to the web to find support and an answer when they come up against brick walls with their doctors and neurologists hence the apparent epidemic or as Manerva suggests 'endemic' to the population'.

[involuntarydancer in reply to restlessstoz]

I was thinking that (about having a famous ambassador) but I would see the problem as being that, through lack of sleep and/or the impact of the treatment drugs, restless legs prevents people from doing the things that cause or enable people to become famous. It saps your ability to achieve much more than getting through the day. No one is going to get famous doing that. Before I acquired rls through pregnancy, I was a high achiever. I was on course to become a judge which would have been an ambition realised for me. Now it is a good outcome if I can put in a proper day's work.

[restlessstoz in reply to involuntarydancer]

I think you're right there. It's hard to do a decent days 'normal' work without having to achieve a level that would be notable! Sleep deprivation leaves me in a state of emotional and physical depletion and I'm lucky if I can do my work, very basic admin work, if I'm up half the night, and the last three days, I've been up at least four times a night for an hour. It doesn't leave much space for sleep and during the day, it leaves no room for doing more than just basic stuff.

[nick-the-turk in reply to restlessstoz]

I’m lucky to get 3 hours a night sleep and can’t remember the last time I had anymore and struggle to do my job as a postman but we have to fight on or give in lol

[LotteM in reply to nick-the-turk]

That doesn’t sound too good, Nick. Have you considered discussing a stronger painkiller with your doctor? E.g. tramadol or maybe the licensed Targinact (or Oxycontin)? Three hours a night is definitely not good enough.

[nightdancer in reply to nick-the-turk]

I just went 52 hrs solid of no sleep, because of doc' mistakes. I had NO idea what my name was at a certain point. It is CLEAR why sleep deprivation is a preferred method of torture! xx Thinking of you.

[Hidden in reply to nick-the-turk]

Nick, i think maybe your meds need a tweak. 3 hrs is not enough. Alot of people find they have to give their meds a tweak sometimes, if they are not working as well.

[Hidden in reply to involuntarydancer]

Actually they are famous people who do suffer with RLS, well one i know of he is a American actor, cant remember his name.

[LotteM in reply to Hidden]

Damn you, Elisse! 😘 If his name pops into your head again, post! And we should then try to het him to “expose” himself.

Excellent idea, restlessoz, to have someone somehow famous raise awareness. The key is to how to find or become that person.

Here in NL we very recently had an Olympian gold medal winner who has had cancer many years ago swimming the Friesian 11 cities tour, which is normally done skating if the winter allows (not since 1997). He unchained an enormous media-attention. And money (more than 6 million €). And very soon (this Aug-Sept) we will have an ‘ordinary’ young woman with RLS walk a long distance during about a month to raise money and above all -hopefully - a lot of awareness through media attention as well. I will let you all know if this will indeed be successful. If so, it could become a strategy to be copied and repeated in other countries!

[Hidden in reply to LotteM]

Lotte i will see what i can dig up.

[nightdancer in reply to LotteM]

We have already dealt with the people I mentioned, and did all we could with the US Foundation. See my reply under Elisse. It is HARD to get people to speak up on RLS. Especially when celebrities are all about "more serious things" that people will understand. Catch 22

[Hidden in reply to LotteM]

Here you go Lotte, i dug up the info for famous person and even got some more added. see nightdancers's comment.

[nightdancer in reply to involuntarydancer]

In 2009, The actor Corbin Benson and his wife did some PSA's on RLS. Howie Mandel, I am convinced from things he has said, that he has RLS. Kelly Ripa has described RLS to a T on her talk show, without saying the name. many people can function and do their jobs, and they have access to great doctors and health care. There WAS a rumor that Taylor Lautner has RLS. He described it well, also. The US RLS Foundation has been working on getting any famous person who has RLS, OH!, and the one who has the most exposure right now, because of his work with the 9/11 Compensation Fund, does have RLS. he said so on The Daily Show, waaaaaaay back when it was his show. So, there ARE people.. You can see the interviews with Benson if you google it. Again, the reason people do not speak up on RLS, is because of all the jokes that were rampant in 2007-2009.

[lynnmcguire24]

I'm trying to get the word out about Nightshades. NIghtshades cause RLS. I've done a bit of research & there is a bit of a long list of them. You would be surprised at the list. I find if I don't eat anything with Nightshades in it after 4 or 5 p.m. I will have a better night.

[involuntarydancer in reply to lynnmcguire24]

I find that if I don't eat anything at all after about 4 or 5pm I have a better night but it isn't always easy to find the discipline.

[lynnmcguire24 in reply to involuntarydancer]

I understand exactly. It is hard to remember. We can't always be staring at the clock; can we? Good Luck!!

[Hidden in reply to lynnmcguire24]

Nightshades have been brought up before on the forum, but not for a while but cant remember if anyone had success trying leaving them out.

[lynnmcguire24 in reply to Hidden]

I do on the days I don't eat them.

[Hidden in reply to lynnmcguire24]

I mean when they were first brought up on here. If anyone did try them out and had success.

[nightdancer in reply to lynnmcguire24]

for SOME people, as always. Been reading and dealing with nightshades for decades. Diet is not a trigger for a LOT of people, but it is ONE thing to try to see IF it will help you. It is only one thing. Glad it helps you, BUT, I know thousands that it makes no difference. For people who do not know, Nightshade are veggies, like eggplant, tomatoes, etc. A complete list can be found in a simple google. Nightshades for ME, make no difference if eaten or not. "Nightshades cause RLS" is a big blanket statement. "Nightshades cause RLS for some people" is better.

[lynnmcguire24 in reply to nightdancer]

That statement would make sense.... Because each of us are individuals & each of us react different to things.. good luck!!!!

[nightdancer]

It is that more and more people are speaking up now. In FB groups, I get hundreds of requests to join groups every week. It ALSO goes along with summer and heat. THIS time of year is always the BUSY season, like clockwork, every year for the last 29 yrs. yahoo groups before FB groups was all we had for a long time.