Publicize!

[Jumpylegs12345]

Newish to RLS. Retired dr. Strikes me how little most GPs & public know of RLS. Should we all try to raise awareness on social media?. Maybe one day a billionaire with it will see & fund some proper research on this awful condition.

[Hidden]

That's given me a thought. I'm sure that one day some very wealthy person will have their brain transplanted into a new body.

Thus avoiding old age and death.

However, if they have RLS it will be transferred along with the brain..

There's no escaping RLS!

[Joolsg]

I posted about this a few weeks ago. I have the MS Society on board and their campaign team have offered help and advice to get a draft template letter drafted that we can all send at the same time to the ABN & the GP professional body. I am awaiting a response from the RLS UK chair and as soon as that happens I intend to post about a campaign to raise awareness/educate the medical profession about RLS, dopamine agonists, withdrawal and best meds to use, including opioids and Buprenorphine/Temgesic. I have a few journalist contacts as well now to help spread the word.

[Jumpylegs12345 in reply to Joolsg]

Great. I was a GP & can verify they know v.little about RLS, it's variability, drugs inadequacies & the devastating effects it can have on sufferers. Emphasize need to respect patient s experiences & requests.

[Hidden in reply to Jumpylegs12345]

And me too, another retired GP with awful RLS ( and non diabetic peripheral neuropathy ). I share your sentiments 100% and love your & Jools ideas about publicity. I have learnt more on this site than I ever did at work. There have been a couple of TV programmes about RLS over the years but they were very disappointing & didn’t get the right message over.Where were you based? I worked in Fife, Scotland

[Jumpylegs12345 in reply to Hidden]

I'm fairly new to this but have found some help from evening magnesium tabs, cold legs out of duvet, cold room, no alcohol. I've noticed if l have a fever l don't get it. Interesting.Amazed how GPs impose reg drug advice, not hearing patients own experience. Benzos & codeine once/week each are lifesavers for me but you're made to feel like a junkie trying to get a script!

[Hidden in reply to Jumpylegs12345]

You too about the fever story? I’ve reported before & others said the same. I emailed a US expert who is happy to give advice & info, found from this site, Dr Bruchfhurer & he said has had anecdotes of same from his clinic & they don’t know why. Wish they’d research as might me one of the keys.

[Graham3196 in reply to Jumpylegs12345]

I think I remember that you shouldn't have a ferritin measurement made if you have a fever or inflammation because the ferritin level is higher than your normal. If this memory is correct then perhaps the RLS relief is due to the higher ferritin level. If so then this is good news because it would suggest that you will benefit from a permanent increase in ferritin that you might get from an intravenous ferritin infusion. Its worth a try anyway. Some people only get a short term increase in ferritin from an IV infusion and others get no benefit.

[Hidden in reply to Joolsg]

Yes please Jules. As you might too I am also a retired GP and have posted before

[Jumpylegs12345 in reply to Hidden]

Does anyone on here have links to medical journalist who could help with publicity??

[Hidden in reply to Jumpylegs12345]

Not medical journalist but discovered on Facebook that someone at school with me ( we left 1969! ) but wasn’t an actual friend, has son who is bbc journalist but slightly hesitant to ask as might backfire - the last 2 programmes didn’t do it justice. I also know of tv producer son of folk I knew a little in town I worked in who has done some excellent docu series including the choir programmes & some others but again I wouldn’t like to be part of any publicity. I can supply names & details if anyone wanted to contact.

[Joolsg in reply to Hidden]

I'm speaking with the Chair of RLS UK this weekend and hopefully we can make progress on the template letter that we all send at the same time.I have 2 journalist contacts but will try to find more.

As the MS Campaign Team have been so helpful I will also ask if they can include an article in the MS Magazine ( 30% of people with MS have RLS).

I've also just done a video with ShiftMS, a campaigns group, and when it's available I will post everywhere possible.

I will also ask the members of this forum for press contacts, or if they know anyone famous who suffers from MS.

Jools

[rkatt in reply to Joolsg]

Brilliant initiative!

[Suberino in reply to Joolsg]

This sounds brilliant Jools. Thanks so much for all the work you've done on this. Count me in for letter sending. Anything else we can join you in doing? Sue

[Joolsg in reply to Suberino]

If you know any medical journalists send details my way. I have 2 good contacts so far. The MS Society Campaigns team have said they'll help spread the word via their social media.if you're on Twitter, I intend to use social media to get the message to as many RLS sufferers as possible.

It'll be a long campaign but I'm so sick of being ignored. The Neurological Academy in the UK doesn't even mention RLS on their website. It's the most common neurological disease and we are ignored everywhere.I will be speaking with contacts at EARLS and at RLS.Org in the USA as well.

If everyone on this site helps via twitter or Facebook, we could really start to make some waves.

Jools

[Netball-50 in reply to Joolsg]

This is briliant I've got nowhere with GPS I'm really struggling lately I know its probably to do with my sertraline but catch 22 I suffer with low mood anxiety!! Anyhoos publicity is a FAB idea I will support this no one understands this and how it affects your life its affecting my job now too horrible thing to have its draining so GOOD LUCK will look forward to seeing the progress on this 👌👍😊

[Joolsg in reply to Netball-50]

It's awful isn't it? RLS causes low mood but the meds all cause RLS. Sertraline is known to make it much worse.

[Suberino in reply to Joolsg]

I am not a big social media user, but would be glad to put something on Facebook. Any chance you could guide me (others) on best message / info?

[Joolsg in reply to Suberino]

I am awaiting replies from several medical schools about the Neurology curriculum and I will be preparing a template letter for everyone to write and send at the same time. I'm also in discussion with journalists.I will put a fresh post up on the site in a few weeks time and will suggest what we can all do to ensure a co odinated campaign to raise the profile of RLS and ensure it's taught at medical school.

[Suberino in reply to Joolsg]

Thanks, Joolsg

[Hidden]

Ah but, the brain ages too! We lose cells every day.

Also the more memories we retain the more the memories get mixed up with each other.

If you ask somebody to memorise two lists of items and later ask them to recall the lists, some of the items from the first list will get recalled in the second list and vice versa.

This is called "proactive interference" and "retroactive interference"!

Or is it the other way round? I always get them mxied up.

I suppose, it it were possible you could have your SELF transplanted into a new brain. Actually It would be a copy, not the original you. This raises the question of identity.

So if you have an object in front of you and it disappears for a brief moment then reappears with an exact copy of it alongisde. Exact in very way down to the tiniest of detail, then how do you know which one is the original and which is the copy?

I know the answer!

[Gmc54 in reply to Hidden]

Manerva..........stop scrambling my brain!!! It is now completely numb! 😂😂😂

[Esme2007 in reply to Hidden]

Manerva - you are amazing !!!!!

[landdebbie]

Absolutely people seem to think it's just wanting to move your legs.They don't know how bad it can get or how it affects your sleep. They also seem to think you shouldn't exercise.

[juweave]

Perhaps a letter to the BMJ or the Lancet from a GP who's also a sufferer would be good route to getting the attention of the medical profession. I'm a retired science journalist so could help with drafting and submitting. You could contact me separately outside the forum if interested.

As well as routes to more publicity, Joules has mentioned the need for more research in previous posts. Our forum could be a good place to start . RLS sufferers have very varied experiences both in the severity and location of symptoms and also in what does and doesn't help. Some text mining to quantify what issues are mentioned most/cause the most distress/help/don't help etc. could make connections that an individual reader couldn't easily make and reveal some promising research questions.

[Hidden]

One last question. When you wake up in the morning how do you know you are the same person that went to sleep last night?

[Graham3196 in reply to Hidden]

I think therefore I was. I have the problem that some of my distinct memories are inaccurate. I know I put the car keys on the shelf so why are they in my pocket a half hour later?

[Hidden in reply to Graham3196]

Poltergeist!

[Noddedoffagain]

When I try to describe what it is like to suffer from RLS the usual response is ‘ oh I get that when I’m tired so I go to bed’. It’s so difficult to make people understand how devastating and cruel this actually is. I’ve always thought what would happen if a senior member of the Royal family had it. Just a thought?

[bedith6 in reply to Noddedoffagain]

I have always wondered that when I’m pacing and kicking in the middle of the night

[Hidden]

Thanks for posting this and getting some good (some sensible) responses. You appear to have sparked something off.

Jools is a great member and she is quite active regarding RLS.

I wonder if it would be of help to try to put together a phenomenological study or case studies of RLS and get them published.

It's very common for sufferers to say that doctors don't seem to know much about RLS, but it seems moreso that many have no insight into the subjective experience of it and what it means to sufferers.

This may also help sufferers. My own view is that there is a significant psychological element to coping with RLS and how it's perceived is a factor in this.

The same situation that one person gets anxious at, could be interesting to another, what one finds fearful another finds exciting.

[Hidden]

Well said!

[Graham3196]

It might be worthwhile to extend the campaign to whoever designs the curriculum at medical schools and perhaps a direct mail aimed at med students telling them about the disease. Some of them might feel inspired to find out more or raise the issue with their course administrators. There must be lots of students and supervisors looking for topics for research. How do we raise money for this?

[Joolsg in reply to Graham3196]

I act as a guinea pig for medical students at St. George's teaching hospital in Tooting. I raise RLS every time and the students have never heard of it and confirm they've not been taught anything about it. The tutors are also shocked to hear RLS is more serious than MS ( I have both). That's what I am trying to achieve in the template letter- RLS must be taught during the Neurology section.

[Netball-50 in reply to Joolsg]

Brilliant 👍👍