I often wonder if our members could get together an assortment of posts about RLS, to be able to publish a small book (or even a large one), to circulate to doctors surgeries, so that GPs can see the problems of RLS and the treatments offered, the drugs that haven't helped us, the ones that have. The frustration of coping with this impossible illness, the patience, and the knowledge that has been gained through very painful processes by its members. I wonder if any of them would read it.? And would it help us?
I sit and try to think of ways to bring attention to us. Anyone got their own ideas?
Written by
pennygates
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Just relating this to the UK at present, I'd initially say that - based on experience and on comments shared here - it seems very difficult to get doctors and neurologists to read and trust something which doesn't come to them from the NHS or their own professional body.
But as the NHS, NICE and professional bodies have not to date proved very cooperative in updating guidelines for the treatment of RLS, or indeed even in including RLS in doctor's training, I think there *might* be a case for producing a concise instructive leaflet for distribution to GPs and neurologists under the auspices of RLS UK. (Whether they'd read and act on the leaflets is another matter, but nothing ventured..)
HOWEVER, producing and distributing large numbers of such a speculative leaflet (let alone a book) would be an expensive undertaking - and RLS UK is a small charity with a limited membership base.
I don't know how many of the users of this forum - created by the European Alliance for Restless Legs Syndrome (EARLS) and RLS-UK - are actually subscribing members of RLS UK, but I suspect not a high proportion. As a first step, funds raised by membership could help to fund the charity's activities - whether that be by continuing to approach professional bodies, or lobbying MPs, or in anything else including potentially by leafleting GPs.
I know my post is a bit of a pipe dream, but nonetheless with a serious undertone. It would be ludicrously expensive to produce a book, I do get a bit carried away sometimes.Your much better and more practical approach to helping RLS UK, to perhaps produce a more informative leaflet is a good one. I have just delivered a leaflet from RLS UK to put up in the surgery which is just a very general one. In my view, no criticism intended, if I was reading it without knowing anything about it, it doesn't really give a strong enough idea that RLS can actually wreck peoples' lives at its worst . They described in one part the symptoms as' unpleasant , ticklish sort of feeling' . If only! I know some people do have it mildly. But it doesn't get the message across what many people are up against. (I'll have RLS UK chasing me about this) , but I was a bit disappointed with it. I do however, fully support the charity, and thank goodness we have it.
I think you're probably referring to the What Is RLS trifold leaflet which was intended to provide "an introduction to RLS for newly diagnosed patients, their families and employers." The idea was that it could be distributed in surgeries, clinics, libraries etc to be picked up by anyone interested.
A similar size A4 trifold, or possibly A3 folded to make the same size but with twice the space, aimed at health professionals, packed full of pithy info and links, could make an impact.
However there are something over 35,000 fully qualified GPs working in the NHS in England alone, plus the rest of the UK, plus neurologists. Production and then distribution costs of the huge numbers required would be high and there could be significant wastage in that some (?) would be binned unread; it could also/instead be produced & distributed electronically, the danger there is that it's all too easy to (i) get stuck in spam filters and/or (ii) be deleted.
I still feel that if money was no object that it could be a useful exercise, but I'm sure that RLS UK would need a *substantial* injection of both funds and resources to make it possible. And if RLS UK had such funds and resources there might be other priorities....
Money is always a problem for charities: I found it disappointing to note that last month's huge effort by Debbie Abrams, advertised on this forum, to raise funds for RLS UK by walking 500 miles only got support from I think 11 people donating a little over £300. While anything helps, this doesn't fund a big campaign.
I'm sorry that I didn't see the advert promoting Debbie Abrams walk. I didn't know about it. It's very disappointing that only 11 people donated. Did people not know about it, as I didn't? Everything you have said about producing a leaflet even, shows how expensive it would be, how difficult to reach 35,000 GPs, and the possible wastage involved. If we can't support one person who has made a valiant effort to raise funds, only to raise £300, then how much more difficult it would be to do something on a large scale.
I bumped up the thread every day, if not twice a day, for the whole month that Debbie was away walking in aid of RLS-UK to raise funds for research. healthunlocked.com/rlsuk/po... Unfortunately I was not that shocked by the total lack of response as it happens every time. It was also put up on the RLS UK FB page and again exactly the same lack of response either financially or any encouragement for undertaking this venture.
You must feel disheartened. Perhaps part of the problem is that people log in while asking their questions, and then disappear until they have another query. Certainly that's what I have done in the past. If you're not coming onto the forum regularly you wouldn't know about the post. I don't use FB either, at all, so another chance to see it gone. Maybe there are others like myself, who don't use FB.
I feel very bad about not supporting Debbie, after achieving her goal. She deserves much more than that. And so does the charity and the people who volunteer, like yourself.
Thank you for your lovely reply. I agree with you, people log on to ask their questions and disappear until the next time they are seeking help. This does not apply to everyone though. I cannot believe only a handful of people read that thread . It was put up on our RLS UK FB page as already mentioned above and Twitter too.
It's made me realise the importance of supporting the forum more, by coming on regularly, without necessarily asking a question. I became a member of RLS UK just recently. It took me some time to do that, as I was just looking at HU, and using it for my own needs. Feeling pretty selfish right now.1
The site is excellent, but I'm a bit of a technophobe, and found it difficult to find my way around. I'm sure I'm still not using it properly to it's fullest extent. But this has prompted me to do this, and pay more attention.
For anyone who is interested RLS-UK only have 346 paid up members to date. We have 7 voluntary trustees, some having been trustees longer than they would wish but with no new ones coming on board they carry on. How can we possibly raise our profile with such a tiny membership and small committee?
We would love to hear about any suggestions you might have. rls-uk.org/contact
It's a very low number Kaarina, especially when you think of how many suffer from it in the population. Yet most people don't even know about its existence. I have never actually met another person with this illness. Only when I found HU was I able to communicate with a fellow sufferer. I don't know how many people use HU for RLS, but it would be good if membership could increase from that group at least. I only wish I could volunteer, but as I explained to Jools, I have several other conditions, which are difficult to manage, glaucoma being one, which has worsened over time, even posting can be hard. Also I dont have the skills you would need to be of any use, technical computer skills, financial experience, and fundraising. Out of everything else, I must say that RLS is the hardest to manage for me, and I suspect for others too. The name Restless legs, if I do mention it to other people, does not illicit much response. It seems to sound quite trivial to many, so not always taken very seriously. One of my other conditions is called Crohn's disease. When I've told others, I have had jokes about the name, ' oh is that an old witch's disease, or an old woman's illness. ' It's so easy to attach labels to anything, which detracts from the illness. I don't discuss that now, if I can help it. Everything is in the name! Sorry about my little rant, Kareena! Hope others can offer some ideas for raising the profile of RLS. Good wishes to you all at RLS.
You rant away! I do! Regarding the name Restless Legs, you may find this of interest: healthunlocked.com/rlsuk/po... This was posted 8 years ago.
Totally agree! it is an appallingly low RLS-UK membership number. Sufferers can get all the information they need by googling, from this forum and our website all for free. Why support a charity? Problem is no research will be done without funds so we are stuck between a rock and a hard place. RLS sufferers need to start to think outside the box and support the charity and likewise the charity can do more to support them.
Hi Kaarina, I haven’t looked at this site for a while so missed Debbie’s appeal, but see donations are still being accepted so I’ll happily support her. Hope other forum members do too, so she reaches her target. It certainly was an amazing effort and I congratulate her on such an achievement.
Penny, you're not alone. Look at the pinned post below. I started a campaign and lots wrote to their GP surgery, their MP, the RCGPs and the ABN.It did NOTHING!
ChrisColumbus has definitely got a brilliant grasp of what would be involved in producing and distributing even a new leaflet. He has brought me down to earth with the logistics and practicalities involved (I needed it). As I said to him, I get a bit carried away with things!! But it's nice to dream.....
I'm sorry that your campaign didn't achieve what you had hoped. What do we have to do to get through those barriers imposed by the hierarchy in the medical profession. They really don't know what to do. How can they if its not deemed important enough to be included in the curriculum.
You can ask Kaarina, the moderator, to start a pinned post of 'success stories'.I tend to 'follow' members who have had success so I can pass on what has worked for them.
As far as I am aware I can only pin one post at a time. So this would not really work would it? They would not be grouped all together in the Pinned Post section. I have a feeling not many users look at the pinned posts or past threads come to that. Most users are only concerned with posting their problem/question/story, receiving a reply and disappearing until they wish to ask something else.
The Yellow Card Scheme Reporting information for example is in the Pinned Posts section but unfortunately I have a feeling not many of us use that facility. healthunlocked.com/rlsuk/po...
nothing is easy is it Kaarina , so appreciate all your work and support I sincerely hope one day we no longer have this battle to expose and the next generation do not have to walk in our shoes.
You know Kaarina, I've thought about what you've said. I stumbled across HU by accident. Most of the things I've learned about using technology, social media etc, have been learned this way. I didn't have a lot of time in the past. I cared for my husband for ten years, with multiple myeloma, and my daughter with severe internal injuries. It took all of my strength and energy. I didn't use the Internet much, I was struggling with my own illnesses too. Since my husband died I now have more time on my hands, so I try to catch up with my lack of knowledge and experience with technology. So, to the point: I find it difficult with my patchy background to navigate around the Internet. It's the same with HU. I don't know what pinned posts are, or threads. TBH if I do find something, it's by mistake and I can't remember how I did it! It's been a steep learning curve for me. I wonder if there are others like myself who struggle around in this way. Learning is haphazard and serendipidous for me, but I'm learning. Just a thought.....
I would also like to add Kaarina, that finding HU has been a great support for me. I've learnt I'm not alone, and being able to chat to people from all over the globe is just wonderful. I love this site, and feel connected in a way Ive never before experienced . Also Im learning how to use technology. So it's onwards and upwards for me. Thanks to everyone for their kindness and support ❤️ .
I think you are doing really well finding your way around the forum. I am no whizz with navigating the internet either! A thread is a conversation within a forum that includes the initial post and all replies to it. Simple as that! Pinned Posts are topics considered to be important that everyone who reads a particular forum should read them first. They are pinned (hence the name) to the top of the forum they belong to so that new users will see them.
Dr Buchfuhrer's book is available second hand via Amazon. His website has thousands of RLS stories and Dr Buchfuhrer's replies. It's upsetting reading to see the scale of medical ignorance and mistreatment.'The Clinical Management of RLS' second edition by Drs Buchfuhrer, Allen, Lee & Hening.
Now out of date as the Mayo Algorithm the 'gold standard' but it's a great book. I used to take it to all my appointments and quote from it.
Firstly, Pennygates and ChrisColumbus, love the book idea, could we self-publish/link to RLS UK, etc/put on the internet and just print out to give a copy to local doctor’s surgeries? Or get it made into a best-selling film, and jointly all accept the Oscar for Best Original Screenplay!! But seriously, we could possibly punish ourselves?
Secondly, Joolzg, how did you get so clear of RLS, please?
Thirdly, hanging head in shame, especially after the help this site has given me, as I saw the post re the walk and never contributed. Does anyone have the link still, please, thank you.
Unfortunately the only means to donate seemed to be via credit card and being a bit of a (poor) dinosaur who was never in a position to apply for one, I don't have one of those! Which means that so much is out of reach. If things like this were available via Paypal, then for me at least it would be doable and I would definitely have donated.
OK I understand. If you did want to make a donation you could do this by electronic bank transfer This would go direct to RLS-UK but all funds received go into the same little RLS-UK pot. We accept cheques too! rls-uk.org/make-a-donation
Didn't see this as I wasn't notified. I am clear of RLS because I am lucky enough to be in an area that allows Buprenorphine. I take 0.4mg at night. My RLS went from very severe on 150mg pregabalin and 25mg Oxycontin to non existent on 0.4mg buprenorphine.
It is now the preferred opioid in the USA because it has a lower risk of respiratory depression than methadone.
I’d agree that the consequences for those worst affected by RLS make pretty sobering reading and I think it would be useful to document them somehow so it could be used to influence people who fund research, and those in the medical profession responsible for diagnosis and treatment. Joolsg has already been round this once but it probably needs to be a regular thing. Apart from the mental issues related to not being able to sleep there are many other problems ranging from increased likelihood of dementia and cancer, risk of suicide, risk of road accidents, loss to the economy from people who can’t work effectively or at all and I’m sure there is much more.
Read ChrisColumbus relpy to my post. It's a lovely idea, but wholly impractical on many levels, which he explains.. I didn't think things through properly. But it was just a longing to get the information out there. Joolsg started a campaign, involving people writing to their GPs, MPs, specialists and others. Apparently it achieved nothing, which was sad to hear.
When Kaarina posted that the charity only has 346 signed up members and 7 trustees, I realised how hard it would be to achieve. We on HU use the forum for free, with all its benefits, and great support and advice. I wish more people on the forum would become members of the charity RLS UK. It is desperately needed. I only joined very recently myself.
I copied the Mayo updated Algorithm, but my GP wouldn't accept it, as it wasn't recommended by NICE. Said he couldn't follow the guidelines, only those recommended by NICE. This not uncommon, in the UK.I agree it would be great if they would look at RLS,-UK. In time I think they will.
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It was put up on our RLS UK FB page as already mentioned above and Twitter too.
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