central sensitivity syndrome - Restless Legs Syn...

Restless Legs Syndrome

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central sensitivity syndrome

Jenevewill profile image
29 Replies

Has anyone heard of CSS. My dr said this can cause restless legs and stems from childhood trauma. Sort of crappy to think that yes, my childhood was super traumatic and potentially from that I still need to suffer.

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Jenevewill profile image
Jenevewill
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29 Replies
SueJohnson profile image
SueJohnson

Yes people with childhood trauma are more likely to get RLS as they continue to produce less dopamine during adulthood.

Elisse3 profile image
Elisse3 in reply to SueJohnson

Interesting never heard of that before i had childhood trauma but my brother also has RLS didn’t as we have inherited RLS would that still apply for me ?

Jenevewill profile image
Jenevewill in reply to Elisse3

Well, did you brother have the trauma too ?

Elisse3 profile image
Elisse3 in reply to Jenevewill

No just me.

SueJohnson profile image
SueJohnson in reply to Elisse3

Yep. You have 2 things predisposing you to RLS. Is your RLS worse than your brothers?

Elisse3 profile image
Elisse3 in reply to SueJohnson

Hi Sue no both have severe RLS the only difference is i have low tolerance to taking meds side effects hit me hard at times my brother can take higher doses of meds than i can. He sees an idiot neuro that has him on 6 msg neupro patch i keep trying to educate my brother on meds etc but he seems reluctant to go against the neuro. Where i am different i would never let any doctor or neuro ( never seen a neuro as it would be the same one my brother sees) prescribe a med i know they shouldn’t. 😬

SueJohnson profile image
SueJohnson in reply to Elisse3

What a shame for your brother that he won't listen to you. Have you tried printing out the Mayo Algorithm for him? Although if he won't listen to you, he probably won't read it.

Elisse3 profile image
Elisse3 in reply to SueJohnson

He just needs to speak up but won’t. sigh. ☹️

Munroist profile image
Munroist in reply to SueJohnson

I too find that interesting as I had a childhood event which might qualify. I will also see if I can find any relevant research.

This popped up almost immediately. Goes into a lot of detail and includes CNS (Central Nervous Sensitivity) alongside CSS which brings physical trauma into play as well e.g. spine /nerve issues.

sciencedirect.com/science/a...

SueJohnson profile image
SueJohnson in reply to Munroist

and another one which is where I got it bebrainfit.com/dopamine-def...

Elisse3 profile image
Elisse3 in reply to SueJohnson

Will read the links later a bit busy right now. 😊

UsableThought profile image
UsableThought in reply to Munroist

Munroist, this is a good study that my search attempt didn’t pick up (see my slightly pompous post on not finding anything). I should have included central sensitization among my search terms.

LotteM profile image
LotteM

Interesting. I had childhood (psychological) trauma. Shall look into it tomorrow. Bedtime now.

If you can give a good reference?

Jenevewill profile image
Jenevewill in reply to LotteM

I don’t have a reference , it’s just what my family dr said. But you can look up dr Andrea Furlan

SueJohnson profile image
SueJohnson in reply to LotteM

sciencedirect.com/science/a... which Munroist found and bebrainfit.com/dopamine-def...

restlegs1 profile image
restlegs1

The consultant sleep specialist I saw recently said that RLS is often due to trauma (many of his patients are Veterans). My GP (family doctor) said that childhood trauma was most likely a culprit. Especially if the mother experiences high levels of stress ( increased cortisol in the body) during pregnancy. I think it makes sense, that flight or fight thing.

ChrisColumbus profile image
ChrisColumbus in reply to restlegs1

Yes, sleep disorders including RLS are fairly common in PTSD sufferers

Edengirl58 profile image
Edengirl58

Hi Jenevewill,

I’m sorry that you suffered then and are suffering now. You may be interested to see my post ‘Mind and Body Syndrome’ from a couple of days ago. I was very fortunate to have a happy childhood, though did have adverse experience as an adult which had lingered with me.

Jenevewill profile image
Jenevewill in reply to Edengirl58

How do I view that post ?

ChrisColumbus profile image
ChrisColumbus in reply to Jenevewill

Click on Edengirl58 and then on her Posts, or just use this link:

healthunlocked.com/rlsuk/po...

DicCarlson profile image
DicCarlson

Well, certainly something to consider! Here is an interesting book - It Didn't Start With You...

amazon.com/Didnt-Start-You-...

Also as a technique for trauma and PTSD treatment consider "Havening" and you can either find a practitioner or use Self-Havening...

havening.org/

amazon.com/Healing-Your-Han...

LotteM profile image
LotteM

Too busy to research it more than very superficially at the moment.

But.... I knew about this concept (CSS), but it deals mainly with chronic pain without apparent/detectable cause. Although RLS has no directly observable cause or biomarker, in my view it is clearly different from the chronic pain issues.

Most doctors don't know much about RLS, and may view its symptoms as 'vague' and hence link it to chronic pain and the likes (medically unexplained physical symptoms (MU(P)S).

UsableThought profile image
UsableThought

LotteM has it right when it comes to central sensitization. As the term is properly used and understood, ain’t no connection to RLS.

Beyond that, I am skeptical of broad unproven claims such as “childhood trauma increases the risk of adulthood RLS”, whether made face-to-face in the office of a doctor who is not a specialist in RLS, or spread around on the Internet without evidence. When an issue falls outside their area of expertise, many doctors can be just as careless in making up dubious claims as any layperson.

I write the above having first gone to Google Scholar and searched for restless legs and childhood trauma & getting zero hits in the first four pages - see below:

scholar.google.com/scholar?...

Surely if this was a reputable claim, someone would've studied it by now? Of course, if someone has the fortitude to weigh through a dozen more pages in the above search, maybe they'll find something. If anyone does, let us know.

Now, a separate claim is that childhood trauma can alter dopamine function in the adulthood. And yes, in fact there are studies on this general topic. But from the hits I got on Google Scholar, most of the research has to do with mental health issues, e.g. addiction, etc.; and even then, the studies seem to be speculative rather than conclusive. (Possibly because the relationship between neurotransmitter levels and mental health problems is no longer viewed as a particularly strong theory - see more on this below.) Plus, once again, nothing in my search showed up with any connection between this research and restless legs.

More generally, I am very skeptical of the "Be Brain Fit" page mentioned in this thread: the author is a retired chiropractor, not a medical doctor, still less a specialist in psychiatric or neurological issues. He quotes no research, and the rest of the article looks just as dubious. Moreover, as I alluded to above, the article simplistically embraces a largely discredited theory of neurotransmitter shortage (dopamine in this case) being a primary cause of depression and other mental health issues. There are many critics who argue that the theory was invented by the psychopharmacology industry in order to justify research into drugs such as anti-depressants (including Wellbutrin for supposed dopamine shortage). Check out the 2012 article "Monoamine theories of depression: historical impact on biomedical research" for more on this viewpoint: tandfonline.com/doi/abs/10....

So who knows about childhood trauma and RLS. It’s almost impossible to prove a direct connection when a given issue is so complex, and with such varying context, and when the overall processes still are not fully understood.

UsableThought profile image
UsableThought in reply to UsableThought

I must apologize to Munroist, who did find & post a highly relevant study, with central sensitization being used in a wider connotation than I have seen before. But note the absence in that study of any emphasis on dopamine. So my remarks about the caution necessary with overly broad claims by non-experts still stand.

Even with that excellent-looking study in mind, I think it would be a mistake to confuse correlation (which is what the study looked at) as being the same as causation (e.g. “childhood trauma increases the risk of RLS”). It’s tempting but too reductive to be helpful.

UsableThought profile image
UsableThought in reply to UsableThought

Let me narrow my position still further: The study does actually state that childhood trauma is a risk factor - but it doesn’t state that it’s an *independent* risk factor. So when Jenevewill’s doctor said “[central sensitization, or CSS] can cause restless legs and stems from childhood trauma”, that’s wrong on two counts.

First, since it’s a dependent risk factor, a person must already have other risk factors specific to RLS for childhood trauma to play any role in either the appearance or the severity of RLS. This is made apparent by the many persons with RLS who did not have traumatic childhoods, as well as by the many persons who had traumatic childhoods but never develop RLS.

Second, CSS is not *only* caused by childhood trauma. As an example, studies indicate there are multiple risk factors for chronic pain, which is a form of CSS; childhood trauma is one of these factors but not the only one.

So Jenevewill, despite what your doctor says, there is no way to know hiw much of a role your own highly traumatic childhood played in your getting RLS. A statistical correlation shown by a population study is by definition unable to explain what happens to an individual.

Beyond that, what is most useful in the growing research on CSS is whether such connections can lead to improved treatment or therapy. As Edengirl58 reports in her comment, health conditions including chronic pain & possibly chronic fatigue are being approached as forms of central sensitization that are amenable to mindfulness & psychotherapeutic interventions. Personally I don’t see RLS as the same as chronic pain in terms of the role of CSS versus other factors, but if research (and self-experimentation) shows mindfulness can reduce overall central nervous system hyper-sensitivity, that still might be helpful for how we cope with RLS. So there’s still a possible connection - just not a direct or simplistic connection.

Munroist profile image
Munroist in reply to UsableThought

I’d agree that paper was missing any proposal for how lowered dopamine might result from trauma. I’d probably agree with you needing to have some sort of predisposition to RLS for the trauma to have an effect. Personally I know I had mild PLMD certainly after exercise but the RLS really showed itself after an issue with my back (sciatica slipped disc stuff) and I was told I had nerve sensitivity which is basically CNS which I think was my main trigger. Having been through that I am more open to the nervous system being more complex than we think and the possibility of generalised over sensitivity or activity. Still don’t quite see why that affects dopamine or vice versa.

Edengirl58 profile image
Edengirl58 in reply to UsableThought

I would like to know how it is thought/known that dopamine plays a role in RLS- can anyone tell me about this theory please?

Also, how is it known that brain iron plays a role?

Jenevewill profile image
Jenevewill in reply to Edengirl58

I would also like to know

Matrix profile image
Matrix

Yes I have it and yes I had an at risk childhood very traumatic .I have RLS bad and sometimes whole body RLS everything in my body is on edge all the time ,I’m sitting trying to craft and everything is what I call edgy .I have so many other things wrong and apart from Diabetes they all have pain attached to them .Take care and your not alone .🥰🥰

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