Just a suggestion. There is a lot of advice on these pages, some positive and others negative.
Can a volunteer put together information which only shows successful treatments. Treatments which have been working well for say, a year or even 6 months. Often there is a positive item where the patient has only had a few good days.
So a list of different success stories (as we know not everyone benefits from a certain treatment) would point out a possible pathway for RLS sufferers.
New successes could be then added to the list in due course.
Regards
Written by
Peter-caribe
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I think that is an awesome idea! Would this be both medical and non-medical treatments? Also, what about sticking up for yourself? Would that count?
Hello! I mean trying to get your treatment team to believe that something further (than what they are doing) needs to be done. Would that be a success / good news story?
I have added this paragraph in at the beginning, because I went on a bit.....in summary, there have been no methods or medicines/drugs (legal or illegal) which have proven successful, for any number of sufferers, over a period of time, other than for individuals. Even then, effectiveness can alter in time. All we can do is try what has worked for someone else & hope it works for us.
This is what I originally wrote:
I have recently attended the RLS-UK AGM. One thing I did learn,above all, is that each of us has a different experience: Different symptoms & severityn. Almost as individual as a fingerprint. The only truly common symptom seems to be the need to move legs &/or arms, but there are a high number of sufferers who experience pain (some severe) &/or an involuntary jerking, or sudden movement.
Unfortunately, treatments, right now, are quite varied & the effectiveness (or not, as the case may be) seems very individual. Research is barely off the ground; RLS is still relatively newly recognised, so I am sorry to say, there have not been enough trials for any method to show as effective. It’s purely down to trying this, or that, to find which may give you some relief...or at least some sleep occasionally.
For updates on research, you could look at rls-uk.org
All of the trustees are sufferers themselves, & are the driving force behind educating healthcare providers in the UK. They also work closely with organisations in Europe, at a high level. A lot of those involved are themselves healthcare professionals.
If there is any news, for the uk, RLS-uk.org, I feel, would be the first source of information.
I have tried Ropinerole. Although I did sleep when I took it, the effect on my life was too higher price. It took months to return to my previous level of sleeplessness when I came off it! Personally, I would not go near that group of meds again. I did meet people who are currently using it, but each of them said they were looking to increase their dose, & were already trying other ideas, alongside, because it had become less affective (pretty much the experience I had).....but there will be some who swear by it! ....as I said...it’s all so very individual.
In summary, all we can do is try something which has worked for somebody else, whether it’s dietary, prescribed, holistic, exercise, yoga, meditation or many other ideas. What works for one, may not work, or even exacerbate, for someone else & vice versa.
You make valid points Bukyboy. Some of us use the acronym waad (we are all different). However it is not correct to say that rls has only recently been identified. It was written about as far back as the 17th century and even back then it was recorded that it responded well to opiates so treatment also has been around for a very long time. Opiates and opioids remain a very effective remedy for a large majority of sufferers.
It is also fair to say that raising iron levels (serum ferritin) is helpful for most though not all.
Finally magnesium, as a supplement or topically applied, seems to have a beneficial effect more often than not.
In respect if these treatments at least, it is not so much a case of ‘we are all different’; rather it is a minority that doesn’t respond.
I suspect that a majority would also respond well to the following:
Stretch exercises;
Moderate exercise during the day;
Diversionary tactics such as a compelling computer game;
A ‘clean’ diet.
I’m not saying they will result in an elimination of symptoms but there will be an abatement.
In consequence I think the suggestion of the op is excellent but I’m not sure if it is possible within the health unlocked format. In the US forum at rls.org they have a ‘sticky’ system where permanent threads are maintained at the top of a selection of umbrella topics so that exactly the type of system proposed can be implemented.
I mentioned that RLS had only recently been "recognised " ...as in, recognised as a problem needing serious research & treatment. I am fully aware of reports dating back to 17th century. Sorry if I seemed unclear on that.
My message was to say that it has only been taken seriously in relatively recent years. Very little is really understood, therefore trials are scarce so far.
I agree with what you say regarding excersise/diet etc. They do make some difference, but for me, so minimal, my sleep is barely any better...& that still fluctuates from bad to dire.
In summary, I would be very surprised if someone has studied blogs enough to compile a list of things which "really work". I am just too tired! Otherwise I just might...but I suspect a lot of us may feel that way.
Omg. I've rambled again!
You'll be pleased to hear this is the last I shall participate in this chat....unless, in the months/years to come I find something unquestionably recommendable....but, again, as you say WAAD! 😊
I think that’s a good idea. I dip in and out of these (and other) blogs but inevitably get a bit depressed. I have often wondered if everyone (and I have to believe there are) who have found a ‘solution’ and those whose symptoms suddenly disappear - not sure if that happens - skip off into the sunset without a backward glance at blogville. So please let’s have good news day and we can all then live in hope.
I can’t imagine that someone who suffered from RLS might find a cure or permanent relief, and not share it. In all my years of having it, the only “remissions” or “cures” I ever heard of were cases where the symptoms were not caused by primary RLS.
None. The trazodone was originally 50mg but i brought it down to 25mg as it was making me a little sleepy. I can 100% rely on these meds to give me a full 8 hours (or more) of quality sleep! The hard part was finding the right doctors.
A sleep specialist (listed on RLS website) prescribes Methadone.
Psychiatrist prescribes Trazodone.
This has saved my life and I am very confident that it can do the same for most who try it!
It’s a good idea, theoretically, but some people respond very well to treatments that don’t work for others; some successful treatments aren’t available everywhere, etc. Also, this is a forum - we can each search for what works best for us. We can report what works, and see how others respond. I don’t think this is the palce to ask someone to try to compile a list that won’t be what we all might like it to be. RLS is too varied, things that mimic it is too varied, and I’ve never seen or heard of anything that works for everyone. I’ve had RLS for 40 years...if there was a “one answer” it would have been named already and we’d all be doing it.
I’m wondering if, instead of just one volunteer, we could get at least one working thing from anyone who wants to share? Then, take that compliation and have it put where we can all see it (we probably need to recruit Kaarina’s or Daragh’s help for this). Maybe our post could go under “topics”.
Would this be what you’re looking for, Peter-caribe?
I only express myself the way I do because I've tried most (and have had the horrific side effects) of the treatments being recommended as the first-line method for addressing this condition. It's being treated with the medications that bring on the worse side effects and/or worsen it. You're right that not everyone has access to my route but maybe by being aware we can guide the best path.
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