A description of RLS heard this weekend

[HilsK]

I attended the USA RLS symposium last weekend. One of the most disturbing but honest descriptions of RLS was " The most common disease in the human population that you most likely have never heard of." Between 8 - 10% of white Caucasians suffer with it. Other ethic groups haven't yet been studied in any depth.

Once I begin to recover .. I, for one, am going to make sure that changes. I am sick to my stomach of the level of ignorance I have experienced among GP's and that many see it as trivial. I heard one say 'Well it doesn't kill you!" That disgusts me. It could have killed me, and MANY commit suicide because they cannot live with the torment.

H x

[Hidden]

Well it does kill - it causes pain and insomnia and often takes very potent drugs that harm our bodies. All this increases our risks of other health issues and insomnia has been shown to shorten lives.

We have had one person state on here that they were going to kill themselves then didn't contact again, maybe they were p1ssing about, maybe they were serious. I spent months of agony contemplating suicide because of RLS. It is not an easy life as we all know too well here.

This is just a way to excuse their ignorance and greed - there is no money to be made from RLS so no one takes any interest in it, I was told that by an honest Dr.

[HilsK in reply to Hidden]

HI Raffs

I have read that on here more than once. I don't think many people joke about and maybe its simply a very loud cry for help. They are not being heard.

I am currently having support from IAP because I got to that point with extreme pain that I could not longer tolerate. More than that, some of the drugs I was being given induce that way of thinking .... What the hell are we meant to do? And the medical professionals in the UK are not being taught about this at Med school .. and once they get into GP practice or even specialist consultancy totally disregard it . 8-10% of the population have it in some form. That is SIX MILLION PEOPLE. There are variants of it some much less invasive than others but all the evidence shows it is a genetic disease and can become extremely severe. It affects kids, teenagers ... everybody.

For my consultant to have to write "This is a very serious disease" in his report to the GP a number of times and then for a GP to disregard that ..... What do we do????

[Joannebbk in reply to Hidden]

Have to say that post about wanting end of life options broke me. Im sure we all felt the utter desperation as like many other people I have had a lot of dark days where I dont think I can take anymore.

[HilsK in reply to Joannebbk]

Yes I deeply hear you .... May be if there was the right support and people who were in a position to help, who truly listened .... that feeling might be eased.

[Sampsie in reply to Joannebbk]

Yes, me too Joanne I hope he found help.

[Joolsg]

The calm, considered manner in which he posted about end of life options really affected me. I really felt I was looking at my future.

This disease does kill people. Nightly torture does that to people.

We all need to start taking videos on our phone when the RLS strikes ( especially those going through augmentation ).

We could then collate all the videos and send them to the Association of British Neurologists and ask for a high level meeting ( maybe the Chair of RLS UK could do this; if not, some of us could volunteer to attend the meeting).

Like you, I am appalled at how badly RLS sufferers are treated. Some of the stories of over prescribing and outright negligence by doctors are terrifying.

[MacQuo in reply to Joolsg]

I have suffered the most agonising RLS over the last week.... Then I noticed a list of drugs that can trigger it. Amitripyline and sertraline were there. Now my doctor knows a Neurologist our me on clonazepam to stop it, yet I was told to take 4 amitripyline at night, and 100mg of Sertraline a day. Since that, I have been suffering badly. I called her yesterday to query the prescribing of the drugs, only to be told that they were used to help RLS!!! I explained I cut the sertraline to 50mg,and halved the amitripyline, and it seemed to help, so she has prescribed me 50mg sertraline now. I started back on amitripyline last night.... And suffered till 4am.....we shouldn't have to sort out our medication ourselves... Absolutely shattered now, and I can feel it now while writing this... Sad state of affairs when doctors haven't a clue..... 😟😟😟😟

[Joolsg in reply to MacQuo]

That is appalling. Anti depressants cause RLS and every RLS charity (RLS UK & RLS Foundation in US) lists these meds as ‘to be avoided’.

Sadly we have to educate ourselves as the medical profession know so little and over prescribe dopamine agonists ( without any warnings) & prescribe anti depressants & anti histamines which worsen the disease.

You should not take the Amitriptyline or sertraline and read up all the possible meds that will help you.

Clonazepam is sometimes helpful but tends to lose efficacy.

Maybe pregabalin would be better for you.

[Midnight-Blue]

I just read your post and am curious. You in the US? And, how did you find out about this “lecture”? I have suffered from RLS since being diagnosed with MS (The 1st time 2015). I ‘ve suffered with it & totally understand how some feel that death would be better than this! Been there, done that & try not to go there anymore. Back to your post. How can I find lectured, such as the one you attended and also were you given any written material about the topic?

[HilsK]

No I am in the UK in the North of England. When I was confronted by a whole section of the medical profession disowning their part in creating misery for myself and others through their neglect of monitoring patients, ignorance about the drug they were prescribing and the blatant disinterest and ignorance about the disease, I KNEW I had to act on my own behalf. I knew primarily I had to learn about the disease.

I found RLS UK pretty easily and this forum but then I came across all the incredible research that is being done in the USA. This led me to the USA's own RLS website rls.org/ which takes you to the American site which offers excellent additional information, monthly webinars and a forum. It is open to everyone as it this forum. I have become a member which is not expensive and this gives you access to many additional services. The webinars are part of that and are excellent!

It all about becoming informed no matter what our illness. Gone are the days when Doctors can protest about patients Googling their condition. They do that out of fear these days because many do not make any effort to maintain their education.

We weren't given any written material but there is always of slides available. I make notes!!! Check the USA site out. Let me know if you can't find it or even if you do discover it and find it helpful,