RLS versus Insomnia

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Posts: 1
Joined: Thu Jul 06, 2017 4:33 pm

RLS versus Insomnia

Postby douggell » Thu Jul 06, 2017 7:59 pm

For the past five years, I have been working with my doctor as we focused on issues associated with a stroke ten years ago together with ageing needs. I developed RLS about five years ago and exposed it to a small community where "RLS" was unknown or unidentified. Not surprisingly, there are few professional resources available. During this period, I have had frequent hematology examinations, Doppler and X-ray tests, a tentative sessions with mirapex. diagnostic imaging. The most recent lower limb arterial doppler ultrasound exams confirmed previous minor issues but no significant stenosis. Both I and the doctor have reached a frustrating dead end as we seek assistance.

Meanwhile, my situation is compounded by a RLS condition which features fractured and intermittent sleep and leg ache in the evening.

It now seems that I am dealing with a number of issues simultaneously: post stroke remediation, RLS aches (mainly in the evening and while at rest) both compounded by insomnia.

The medical services in the area generally recognize insomnia more powerfully than RLS. Consequently, clinics and medical service centres tend to be described as SLEEP CENTRES, although they respond to RLS symptoms if they are identified as part of the sleep investigation (not independently).

The insomnia pursuit, meanwhile, has raised a lot of interest in non-medical "Cognitive Behavioural Therapy", especially for insomnia.

The question arises is it possible that the newly discovering strategies being used in insomnia resolution may have some practical relationship with RLS? RLS solutions do not appear to be relying, at the moment, solely on specific medical solutions. Possibly, it is worth examining non-medical, non-chemical ideas as well.

Posts: 2890
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: RLS versus Insomnia

Postby Rustsmith » Thu Jul 06, 2017 11:19 pm

douggell, we frequently see situations where physicians do know know how to treat RLS. It is not something that most of them were exposed to in medical school and if they haven't attended a continuing education program that covers it, the only thing that they know about it is either what their patients teach them or what the drug company suppliers tell them.

I would highly recommend getting a copy of the book "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Henning. It is available from Amazon for $25 to $35. It is written so that you will be able to understand it even though the target audience is physicians. Some of our members have even purchased 2 copies and then gave the second copy to their doctor.

As for new strategies for insomnia resolution, whether they will work depends upon the strategy. RLS is primarily a neurological disorder that involves issues with neurotransmitters in the brain. Recent work at Johns Hopkins indicates that one of these neurotransmitters is also one that is associated with the sleep/wake cycle. So, unless the new insomnia treatment addresses that neurotransmitter issue as well as providing something to calm the need to move, then it probably won't work very well. I know that 2 yrs ago I was given a new sleep med that was supposed to work differently from other drugs. It was so expensive that my insurance refused to cover it, so I was given a trial one week supply. Good that that my insurance would not pay because this new insomnia treatment was totally ineffective.

Also, if you use our search function and look for sleep hygiene, you will find that almost all of us were told that this would help and we were in almost total agreement that this was a total waste of time and only delayed getting the treatment that we needed.

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Posts: 15020
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: RLS versus Insomnia

Postby ViewsAskew » Fri Jul 07, 2017 2:26 am

Do check out the fora about using alternative approaches. Some people have reduced their symptoms with diet, some with kratom, some with medical marijuana, some with iron, some with surgical hose - a lot of options.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Posts: 384
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: RLS versus Insomnia

Postby legsbestill » Sat Jul 08, 2017 5:46 pm

Are you wondering whether there is a beneficial effect on RLS of cognitive behavioural therapy ('cbt') in a situation where cbt is being used to treat insomnia?

It is an interesting question. I have not come across anyone reporting a positive impact of cbt on RLS but - as is frequently pointed out - RLS sufferers respond differently to many options.

I find it difficult to discern from your post what treatments, if any, you are currently on for RLS and also what you have tried in the past, aside from mirapex (I am assuming from your statement that you had 'tentative sessions with mirapex' that the mirapex was not successful and you are not currently using it as a treatment).

In addition to the many non-medical approaches Ann alludes to (many of which work extremely well on an individual basis), there are other potential medical treatments although I don't know how these would interact with other medications you may be taking, for example for the stroke. These include pregabalin (Lyrica), gabapentin, opioids (for example tramadol, oxycontin and methadone), other dopamine agonists (other than mirapex) such as ropinerole and rotigotine (neupro - a slow release version). You should also check the list of counter-indicated medications to make sure you are not inadvertently exacerbating your RLS symptoms.

It is always worth getting your serum ferritin levels checked - maybe you have already had this done. Latest expert advice for RLS sufferers is that most (but not all) should be aiming for a serum ferritin level in excess of 100 (thus you need to know the actual figure for your levels - not just that they are 'normal' - 'normal' for RLS is very different from the general public).

Unfortunately, in addition to the immediate sleep disrupting effect of the urge-to-move symptoms of RLS, there is a more nebulous insomnia dimension to RLS (even when urge-to-move symptoms are under control) which can be particularly intractable and difficult to surmount. You will find many on here suffer from this and use a variety of means to deal with it - to a greater or lesser degree of success. I personally have found using mmj (as an edible) to be the most effective - though not invariably successful - means of accessing good sleep. If I don't have the cannabis I find I can lie awake, reasonably alert, all night even when my urge to move symptoms are under control (I use Kratom for this). In addition to the underlying problem with insomnia, opioid drugs (which many use for their RLS) can also cause 'alerting' which interferes with sleep.

Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 1 guest