I cannot tell you how grateful I have been for all the help, support and information I have received directly or read about this truly dreadful condition of RLS we suffer. I have found it invaluable being directed to the writings of experts in the field, reading others personal experiences etc.
We all personally know that drs knowledge of this condition is dire & many on this site have helped intercept or prevent many instances of inappropriate treatment.
But I feel that at times there has been a tendency to comment or advise on treatment of other conditions which are very adequately & expertly managed by drs & specialists in general. I think this undermines confidence in folks own medical carers & some of what I read is totally wrong & appears to be being offered from personal reading without the background of many years of clinical training & it’s nuances & risk assessments.
I would like to make a plea that along with any clinical or treatment related advice there is the addition of the source of this advice & the knowledge base behind it.
If this post is not appreciated & in the main it is preferred that I resign from the forum then I am happy to accept that.
Written by
Butterflysun1
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I appreciate your comment and agree it’s important to remember the information we read here, for the most part, is written by laypeople. That said, I consider most of these first hand accounts at least as valuable as “expert” advice, if not more.
I completely agree with you. I consider the first hand accounts as even more valuable as the information from experts. Expert info has often got into the folklore somehow & it is by listening to actual reality that progress is made. What has been happening or not happening re RLS is appalling. I also would plea that re RLS we all listen to & keep an open mind about all we ‘expert’ parients say because we do ‘know’ exactly what is occurring.
My comments do not relate to RLS in any way.
What my plea is about is the non RLS info & statements that have been occurring, about the treatment or assessment of non RLS conditions , where the treatment & care is very good & where information is presented with ‘authority’ but is actually inaccurate, suggestions about stopping or changing treatment without having any knowledge of the personal medical circumstances. That I regard as dangerous & if we are to give such advice then I would ask that we explain how we ‘know’ this & what our knowledge base is.
I take your point, and am supportive of your plea to present evidence, either of other research or of direct experience.
However, it is difficult to know how much trust we can put in medical expertise on "non RLS conditions , where the treatment & care is very good".
Perhaps this is the case with A-fib, I don't know. But just lookin at one area where I've had experience of another condition and of medical 'expertise' - Transient Ischaemic Attack - I have my doubts.
I had a mild TIA and was referred by my GP to the Oxford Vascular Study at The Wolfson Centre for the Prevention of Stroke & Dementia "the UK's first purpose-built research centre focussed specifically on prevention of cerebrovascular disease". Sounds great.
The 'expert advice' was to put me on Atorvastatin. (The 'experts' had no idea that this exacerbated my known RLS, but that's almost besides the point). They didn't warn me that the statin could - and did - leave me with joint pains, muscle weakness and extreme fatigue. This made it difficult to keep dragging myself to and from hospital for assessment of prostate cancer (it never rains...)
Eventually, after doing research myself and hearing from others who had had awful experiences with statins, I got myself taken off the statin and put on their supposedly "only" alternative Ezetimibe. Within days the extreme fatigue went. (Eze - like all drugs - has its own range of side effects, but that's another story).
My point is: 'expert' opinion gets handed down as if carved in stone and repeated sometimes ad nauseam. It's not necessarily the only answer, and (e.g. as in the case of statins) it may be deserving of challenge.
I agree again. That is not good. It is well known that statins can have horrible side effects. It is very helpful to know a list of what tablets can make RLS worse. We shouldn’t have to do our own research.
But we shouldn’t be advising each other of alternatives without any clinical info & expertise about the person or advising treatments are stopped & without proper knowledgr of the actual drugs being recommended.
In the UK pharmacists do a 3 or 4 year degree before even starting their 1st job & giving advice. To be a GP there is a 5 year minimum basic degree, 2 more years foundation hospital training plus 3-4 years GP training as a minimum & as we all know they still don’t know everything so folk who are reading out of interest cannot possibly be in the situation to advise on a diverse range of subjects.
What is clear thought is that most well informed RLS sufferers have learnt a huge amount more about it than most Drs - but not eg under what circumstances it is safe to take iron without levels being checked ( a recent reply of mine ) or how to assess the safety of eg IV iron.
That’s all I’m trying to say. If we pass on info sounding like an ‘expert’ please can we explain our credentials - which could be ‘expert patient’ which is entirely legitimate.
Desperate people like many of us will tend to follow any advice which might help and we must be sure it is safe because actually it is a huge responsibility advising others which can have negative as well as positive outcomes
I would second your comments Butterflysun. Without wishing to detract from the wealth of personal experience that people on this forum have, and generously share, on occasion some replies step into medical advice territory. This is especially problematic when the individual poster's complete medical picture is not known.
I totally agree with your post. At times I have been rather worried about advice offered. One needs to know before new medications are suggested if the person is suffering any other ailment which might need to be taken into consideration, and sometimes the poster does not tell all their medical background.
I would tend to research any information given before I would act on it. However, on one occasion - during lockdown when it was impossible to speak to my doctor - I read here on the forum of the benefits of gentle iron. I decided to give it a go but fortunately did not continue for more than a couple of weeks. The next year I was diagnosed in May 2021 with a rare type of blood cancer and the worst thing I could have taken was iron. I cannot eat fortified foods, red meat, etc. Of course taking the small amount of iron for a short time did not cause the ailment but if I had continued it would have been much worse.
I feel that others might possibly try something like that as it is still so hard for some of us to access even a conversation with our doctor.
Other things that have worried me recently are references to blood thinning medications and some of the suggestions. Some of these medications are good for one thing but not for another. It takes a specialist to advise on this.
Finally I would say that all the advice and help and support I have had on this site has been wonderful. I cannot praise it enough and send my grateful thanks.
Any advice should be backed up by research links. Sadly, with RLS, as we know, doctors aren't taught even the basics at medical school. They are also unaware of the link to low brain iron and the dangers of dopaminergic drugs.
Hopefully, anyone commenting on other areas and other medications will make it clear that patients should discuss fully with their doctors before making any adjustments.
No one would want you to leave the forum for making a very sensible statement
i don’t mind what you said is your idea and opinion but I don’t mind either hearing what other people had tried in order to get better regards RLS for me I haven’t been lucky with any dr I had visited the medication they gave me the side effects were very bad and I had to get other way to information and what can I do to help with this problem, there is not much out there and until now they haven’t find out the roots of why we developed RLS the experience is being different for anyone who suffer from this and I always open to try something different that maybe could help me in my battle with the symptoms
I completely agree the treatment of RLS is rubbish and there is so much bad advice out there. The information on this site is absolutely invaluable & life changing.
The whole point of my post is to raise concerns about advice on other medical matters without having full information or knowledge but sounding as if we do.
This is a SAFE SPACE away from doctors and Facebook regulations to talk freely without judgement.
A space where a CRY FOR HELP will be heard.
This is place we come as part of ourself education, majority of us use multiple sites.
We all reach this forum out of sheer desperation due to the the fact most of us have survived the rolling door of medications we should never have been prescribed by multiple medical professionals that have Zero training or understanding about Will Ekbom disease and the majority have no desire to educate themselves even when presented with well documented
A lot of us people do have cross over medical conditions, where the medication prescribed by a doctor exacerbates or condition or the condition exacerbates RLS
We all come from different educational backgrounds and financial backgrounds.
This forum has the largest gathering of information about RLS on the planet and cross over conditions.More than any doctor or specialist would ever spend the time to study.
Many of us have paid for long appointments with specilalists to give them the opportunity of time to read well written documented RLS information. NOPE we are the ones being undermined. when you have a rare condition you educate yourself and become the expert .
I had one doctor put me in hospital where I prescribed a Ventolin nebuliser 4 times a day for RLS and Amitryptline. I was furious .
We are often treated with disrespect by medical professionals , they do not even listen.
I have taken massive personal risks crossed many countries to get total relief from this vile horrific condition.
Even the leading RLS doctors in the world were not prescribing Buprenorphine at the time and to be honest some of them to this day do not understand the difference between Subutex and Suboxone.
I flew from Australia to spend 5 days at the John Hopkins institute WOW so disappointing.
I new more than the specialist.
The Plethora of information gathered from Healthunlocked definitely saved my life.
If I was regulated I would no longer be here.
I am not allowed on Facebook sites because of the medication I take. I have lost healthcare professionals because of the medication I take and I have lost friends because of the medication I take.
People on this site become our family.
I understand why people may ask a question unrelated of our RLS family .
This international site is exactly how medical breakthoughs come about we are all doing our own clinical trials on OUR own body.
A specialist is one person. doctor is one person
WE ARE MANY and what a plethora of information collectively we have created the best
research site on the planet.
Most medical breakthoughs are incidental.
We all know medication is not one size fits all its not a kaftan
We all know to do our own due diligence.
Please let us have one space we can speak freely I say this with respect .
Yep, you’re part of the solution. The naysayers/nags are part of the problem. Also said with all do respect, kind of. I’m willing to move Heaven and earth to find some solutions to this grotesque condition and I don’t care whether the things I discover have been verified via double blind clinical trials.
I don’t care either and I too am desperate for a solution. As above in my reply to Shumbah.
It is most definitely not said with respect to label some of us ( I take it especially me ) as a nay sayer / nag. I have had my fair share of people not believing what I say about my RLS and pleading that the keeping of open minds & not insisting on sticking to what the establishment say is most likely to lead to a breakthrough.
I say again it is stating as facts things about other medical conditions that I am concerned about & giving advice on them that is dangerous or wrong because they do not have the expertise to make such statements. If folk feel they can give such advice tell us your credentials & sources so we know.
Many people, especially very tired & desperate people, do not have the energy to sift through it & check it’s veracity.
I state again I am not talking about RLS I am talking about advice about other conditions.
This is a Think Tank with many people at or close to Mensa material. Everyone bouncing ideas off each other and coming up with theories and possibilities. If there’s a specific instance you see where misinformation is being given to what seems like a very sick and gullible soul you call it out. A general plea not to dole out bad medical advise for non-RLS conditions is a waste of your precious time possibly better spent doing research. I did some research for you on Losartan. Weren’t you even the least bit curious how Losartan might possibly worsen the symptoms of RLS? I don’t expect Sue to drill down on these things, but I do you. You and I have discussed abstract theories before in my alternative lives here.
I agree this is a think tank and is very valuable indeed.
I was trying not to be argumentative or point any fingers at anyone in particular but after reading several instances of misinformation and wrong/dangerous advice about other non RLS conditions over some time I decided to send out a general plea prefaced by a fairly long appreciative prologue.
None of what I said detracts from the think tank ethos. I am a great advocate of think tanks & in earlier incarnations on this site I have pleaded for the thank tank ethos to be allowed & given instances where the think tank way has led to breakthroughs
I got fed up being told my think tank views were wrong & being told that what I suggested couldn’t be because the current orthodoxy & research didn’t say that.
I am objecting to wrong medical advice being issued about non RLS conditions which can only have been obtained by reading without knowledge.
You don’t know me or who I am or my history so please don’t attack me. I was not unpleasant - these replies are. Adding ‘with respect’ does not turn them into respectful
“I would discuss it with your doctor. Not everyone has increased symptoms taking Nebivolol. You might stop it for 3 days and see how it affects your RLS.”
In a perfect world she should have included “and with your doctors permission” you might stop it for 3 days…
It’s not a perfect world and Sue wasn’t giving advise about high blood pressure just about blood pressure medications that have been consistently reported to exacerbate the symptoms of RLS.
If anyone is guilty of giving out dubious medical advice it would be me not Sue 🫣
With respect you have only been on this site for 12 months and contributed 2 posts prior , this being your 3rd.
I dont think any of us are qualified in telling the Doctors who set up this life saving site and administrators who give of their time how it should be run.
If we make things hard people will turn to Doctor Google or worse black market drugs.
Healthunlocked was founded by a Dr Jorge Armani and Dr Matt Jameson Evans in 2010 as a social network for a space for people with health conditions to come together and corolate extra date from the international masses on medical conditions
We have been using this site for many many years and have spent uncountable hours giving of ourselves to respond to a cries for help both online and offline.
You are still relatively new and have not witnessed the history on this site
Messages can be easily misconstrued and oh my goodness we have sadly lost some of the most educated helpful, time giving contributors.
We still suffer from the devastating loss of those intellegant individuals to this day.
This is not our site we are vistors.
I am sorry if this comes across the wrong way, but if a post causes angst and it is not helping anyone and a distraction it will often be closed by administrators.
I have been on this site for a lot longer than you think and have comtributed more than you think. I have not been shut down but have been supported.
I tried to raise a genuine concern as politely as possible.
Please afford me the same politeness.
What I am objecting to is the very item you suggest would be a bad idea - the replies that obviously DO come from Dr Google as there can be no other source for what is written & obviously has been misinterpreted because it is not from a place of knowledge I can tell.
and so would I! I probably have close to the worst RLS anyone could imagine apart from the poor souls who have or who are suffering the horrific augmentation landed on them by terrible prescribing.
I completely agree again and you misunderstand me.
I too am desperate & have suffered a great deal.
I too want to be listened to & hope when we all listen a breakthrough will come.
Here I am about 4am awake yet again.
None of what you say is disputed or is part of my plea.
My plea relates to misinformation about other medical matters, advice about them and the use of other medicines for them which sounds knowledgable but which is wrong and hence is dangerous. I ask that when giving such advice the persons knowledge base & credentials are explained .If the credentials are expert patient that is just fine & often the very best especially for RLS. Not all desperate people are capable of due diligence.
This site should not be full of the misinformation of others wrapped up as apparent knowledge eg a particular drug is an alternative for treatment of high BP when it is actually not, an alternative anticoagulant can be substituted for a particular medical condition when it cannot, someone is advised they could stop a particular beta blocker they are taking for a few days to see the effect when that is dangerous to suggest as no one has any idea why they are taking it & the effect suddenly stopping might have. These are all very recent examples.
I wish my post would be read properly.
I said it with respect, with a long prologue praising this site & the help it has given me and many others
Your reply says ‘with respect’ but it actually gives me no respect for a very genuine concern.
Hi Butterflysun
It appears that some people are misconstruing what you have written.
It takes a certain courage to speak out on forums like this one and so I'd like to reiterate my support for your post.
I don't know why this thread is in part getting argumentative. Butterfly quite clearly said that her concerns "do not relate to RLS in any way. What my plea is about is the non RLS info & statements that have been occurring, about the treatment or assessment of non RLS conditions" and asking that people giving such non-RLS advice should clearly show their sources/ experience related to this.
This seems quite fair and understandable.
Some medical advice on both RLS and some non-RLS conditions can be poor - either generally or because of the way it impacts on RLS. But if we are certain that we know this, we need to show how we know and quote our sources. It is then very important that forum members discuss this with their own medic(s) BEFORE taking ANY action: certainly don't stop taking any medication or course of treatment before discussing with your doctor.
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