Lotte, Involuntary Dancer and I wrote an article on the benefits of educating the medical profession on RLS and it has been accepted and published in the September edition of the Lancet.
We have also spoken to the US foundation and they are hoping to write about our efforts
We will also be trying to publicise the article through PR contacts in health magazines and newspapers.
September is RLS awareness month and 23rd September is RLS awareness Day. Please feel free to forward the article to help raise awareness.
Thanks WideBody. We are elated and so were the people from the US rls.org organisation. As they have a large audience, them featuring the article will definitely add to its impact.
The link to the article can be copied and forwarded, but the article ("correspondence") can also be downloaded as pdf for free. We discussed, and enhancing awareness and recognition is as important as training doctors.
Thanks all. We met via this forum & have always shared research articles so this was the next logical step. Let's hope it leads to more awareness amongst the medical profession and better treatment
Actually, I want to thank each and every member of this forum. Issues and discussions on this forum have instigated and fuelled the article. This forum is a well and wealth of information and inspiration. Keep it up.
Thank so much for all your input into this forum. The advice I got here literally saved my sanity. And now you’re telling the medical profession what’s what! Amazing.👏🏻 And you know, they’re only people too. They don’t know what they don’t know if they’re not told. Here’s hoping they listen and learn🤞🏼
You're right. They don't seem to read the NICE guidelines or the NHS website either. I've contacted one of the largest GP training companies but have been ignored so far. Will chase up.
I’ve had a reasonable result from my GP by contacting them using e-consult, naming the problem (RLS) and then referring/linking them to NICE. When you see a GP in person (remember that?) about something they know/care very little about, they will usually give you the brush off rather than admit ignorance. This doesn’t work for those patients who don’t know about RLS. Sad.
It is very, very sad and heartbreaking. It's a huge issue and it feels like we're chipping away at a huge mountain with a teaspoon. However, we have to keep going. I am now sleeping 8 hours every night for the first time in decades because of this forum and the help and advice of other members. I'm also lucky that my new GP is open to reading the research papers I send her. I'm aware that others are still suffering horribly. Every RLS help forum and FB group is full of people suffering and not getting the right treatment.It's why I asked RLSUK to back the campaign to get RLS on the teaching curriculum for medical schools and GPs. As usual, lack of funding is the problem.
Congratulations on getting a publication in an academic journal. It would literally take a couple of minutes of lecture time to mention RLS in the context of learning about the dopamine system. I am not sure what extra resource would be needed. I think that there is another reason for this omission.
It is not just mentioning RLS. It is taking RLS seriously. By the time people contact their gp or pcp their symptoms will most likely have moved into the 'severe' class. But all official treatment advices start with no coffee and alcohol etc (which doesn't aggravate MY rls), stretches, movement, sleep hygiene etc. All very valuable but often that ship has sailed.
Shumbah posted 2 years ago about flying to USA in desperation after Oxycontin and pregabalin weren't helping. Dr Glen Brooks prescribed low dose Buprenorphine and it completely resolved her RLS.Several others then tried it with great success.
I was too scared to ask in case it was refused but 7 weeks ago asked my GP and she agreed.
I've posted about it and should point out it doesn't seem to be effective if people are still on Dopamine agonists.
It caused extreme nausea for 10 days but I then used my medical cannabis oil and it resolved ( think my body also got used to it). After 3 weeks I developed panic attacks but was expecting them as I'm very sensitive to opioids. Adding 50mg of pregabalin has stopped them.
As an aside, RLS is a big problem in those with chronic kidney disease (CKD). The probable reason for this is that with CKD the ability to excrete creatinine from the blood is diminished. The efficiency of the kidneys declines in all of us as we age. I don’t know if there has been a study correlating RLS with age/blood creatinine levels.
I have a close friend who had kidney failure and RLS. She received a kidney from her husband and it disappeared.There are definitely different causes for RLS. Kidney disease, anaemia, spinal damage but we need more money and more research to find those causes and the reasons.
Fingers crossed🤞. The head of training at the Association of British Neurologists is aware of the problems and has been very helpful. However, he pointed out there's a serious shortage of neurologists in the UK.
I'm due to see my neurologist in the next couple of weeks. I think it will be a different person than whom I've seen for the last umpteen years (retirement). However he was the one that took me up to 4mg Ropinirole and then prescribed Pregabalin to cope with the augmentation ☹️I'm much more aware now and am probably what Manerva called an Expert Patient..
Thank you so much for doing this! It is amazing how rls is not taken seriously by so many doctors! In my opinion it is life threatening, almost as bad as sleep apnea. There is all kinds of help for that.
To all who read this post and did or did nit reply. We appreciate your "thank you's". What we would appreciate more is if you would copy Joolsg example letter and send or give it to your gp, and send it to the various organisation directly or tangentially involved in medical training. Not only doctors, but also nurses. This is far easier than what we did; it just takes a bit of time and paper. Or access to email.
I hope this is the correct link to Jools'post about the campaign. Please DO people, WE (including you) need it. Recognition and up-to-date knowledge.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
www.patient.co.uk RLS ARTICLE!!!!
