If so, I apologise, but I felt I had to share a discovery.
Whilst affirming, again, that RLS is a physical/biochemical condition requiring physical/ biochemical treatment if severe, I believe that non-physical factors can have a significant impact on outcomes for people with RLS. Equally so, perhaps or possibly more so.
If I've interpreted this study correctly it appears to be saying that people with RLS that is being TREATED suffer MORE distress than people with RLS that is NOT being treated.
Apparently, people being treated suffer more anxiety, phobic anxiety, depression, compulsivity, hostility and even paranoia than people not being treated.
Figure that out!
If there's any truth in this then to me there seem to be two options for experiencing a better quality of life -
ONE : don't get any biomedical treatment for your RLS.
TWO : get biomedical treatment if necessary but be aware that treatment on its own is insufficient.
Interesting!I disagree completely with their analysis.
The vast majority of people on this forum are extremely frustrated and dejected by the lack of recognition they meet in medical circles. They are usually so happy to meet someone ( or this forum) who understand what they are going through.
Ok-- I've speed read it.Basically it is a lopsided analysis.
It deals mostly with patients who have been treated with Dopamine Agonist meds.
Naturally , taking augmentation into account, and the severe side effects of the DA meds, these patients would be extremely dissatisfied. End of story.
Only 2% were treated with opiates. And their experience was not considered.
I really don't see this report as being useful in any discussion on RLS.
Thanks to Manerva for bringing it up. Always good to be challenging us, and seeing if we are still awake!👍🤠
Don’t say awake to me! Hahahaha Got to sleep at 4:30 AM 💜
Noted that the patients in the study were limited in number and there doesn't seem to be any other studies on the same lines to confirm the reliability of his study.
one point against the conclusion
Noted that the study's methodology does appear quite robust.
one point for the conclusion
Noted that the study is lopsided in that the only treatment really mentioned is a DA.
This in itself isn't a clear point against, it just means the conclusion is not valid for people having other treatments.
Noted that those being treated with augmentation are compared to those being treated without augmentation and distress is found to be higher.
A point for?
Noted that the people being treated had expressed dissatisfaction with treatment anyway.
one point against the conclusion
Whether you conclude this study is worthwhile or not then is, I'd say debateable.
That the study found distress in all groups, i.e. those with untreated RLS, those with treated and those with augmentation doesn't seem at all unreasonable, the only thing you might want to disagree with is the relative degree of distress.
My view is that unless any individual has 100% effective treatment that totally eradicates all symptoms and without side effects or consequences then they will have some psychological distress.
This study does seem to identify the nature of this distress.
That in itself would appear to support the conclusion i.e.
"Severely affected RLS patients show psychological impairment in multiple psychological domains which has to be taken into account in the treatment regimen."
This is not the only study that supports this.
RLS is often compared to other chronic conditions like Diabetes, osteoarthritis and pain. It is well accepted that there are psychological factors in these. Why would it be any different for RLS?
I see no problem in accepting that psychological measures can be PART of a treatment programme which includes biomedical therapy.
Why would anybody want to disagree with that?
Obviously if anybody who doesn't suffer sleep deprivation, anxiety, depression, problems with relationships,work issues etc etc or any other problem as a consequence of their RLS, whether it's being treated biomedically or not doesn't have to worry about these issues.
It's about levels of inflammatory cortisol and the placebo effect. If you're getting treated it will reduce your stress levels and hence cortisol levels even if the treatment is not actually effective in itself.
I don't think that this news surprises me much. All RLS drugs act in the brain, which is an exquisitely sensitive organ. I have no doubt there is fallout.They call the fallout 'side effects', but the side effects are just effects, as much as the treatment effect is. Drugs are like shotguns, not accurate rifles.
DAs were discovered to be effective for RLS by accident, so it was dusted off for us. I have little doubt that the shareholders were considered more than the patients.
Thank you for the reminder that playing with the brain is not without risk.
Very interesting reading. I noticed one thing about the study that I'm surprised the authors didn't focus more on. If I'm understanding it correctly, the people who were unsatisfied with their treatment had more severe RLS (based on the IRLS measurement numbers) than those who were either satisfied with their treatment or untreated. That might explain the results, as I presume that dissatisfaction with treatment - or just dissatisfaction with the whole burden of having this condition - would increase as severity of symptoms increases. If I'm correct, then I'm not sure how much the authors can really conclude by comparing the two groups because of the differences in severity. But I'm not familiar enough with the IRLS to know whether the general range of IRLS numerical results is such that the numbers in the study could be reasonably considered comparable.
It is a bit muddy on first reading what exactly is being said.
The IRLSSG severity rating scale is just that, i.e. a tool to measure how severe the experience of symptoms is.
The tool is typical of a kind of questionnaire designed to try and "quantify" what is basically a subjective experience. It gives a number. It differs from research tools which actually measure objective pnenomena. E.g. a thermometer.
I hope this makes sense.
I gather in this study it showed that IRLS scores were higher on untreated subjects than in the general poulation. I believe it also showed that scores were higher in subjects being treated, but suffering augmentation, loss of efficacy or severe side effects.
This isn't really really surprising nor is it the main point of the study.
The MAIN tools used in the study are the SCL 90 R and the Beck Depression Scale.
The real comparison between the groups is in the scores from these two. Put together they indicate the level of psychological distress of subjects.
The SCL is literally a list of symptoms which can be divided into various categories. The Beck Depression scale is as the name suggests.
Putting aside the possibly confusing finding that things were worse for subjects receiving treatment you vould say the study was looking at the relationship between level of severity and level of distress.
I apologise then that my original post was a bit misleading.
I'm often accused of over-dramatising. Sad to say, I was also quite excited by finding this study.
More SIMPLY put it appears from the scores from the SCL and Beck were higher for those scoring higher on the IRLS scale.
This then DOES support the conclusion which might be stated as psychological distress is associated with RLS and the more severe the RLS the more severe the distress.
That in itself shouldn't be any surprise to anbody with RLS.
So what then?
On re-reading the study it is quite revealing about two things
1) what exactly are the psychological conseqences of RLS?
Thanks, Manerva. It certainly makes sense to me that psychological distress would be associated with RLS and that it would increase with RLS severity. It’s nice to see study results that support that. I appreciate you shining a light on this important aspect of RLS.
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