The relationship between RLS and me/cfs/fibro.

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barbc56

Senior Member
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3,657
The last time I saw my primary care physician she mentioned that there is a link between RLS (now called Willis-Ekbom Disease) and Fibromyalgia. We had so many things to discuss, I forgot to ask her about this.

I've done a bit of research so please keep this in mind as far as the accuracy of the following. information.

Fibromyalgia, RLS as well as me/cfs in some cases all share what is called central Sensitivity Syndrome

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An illness described as a CSS involves central sensitization. "Central" refers to the central nervous system, which is made up of the brain and spinal cord. "Sensitization" describes the end result of a process that leaves someone sensitive to a particular kind of input.

In a CSS, we become sensitive to the things that are processed by the central nervous system, which can includebright lights, loud noises, strong smells, rough textures, and pressure on the body. It may also involve certain foods or chemicals. Especially in FMS, the body is sensitized to anything unpleasant, called "noxious stimuli" by researchers
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I think it's worth sharing statement below in the same article.

As scientists are getting more of a handle on FMS, ME/CFS and other related illness, an umbrella term that's more frequently used to describe them is central sensitivity syndromes, or CSS. Some researchers argue that this term should replace other terms, such as functional somatic syndrome, medically unexplained syndrome, and somatoform disorders, because they believe CSS is more accurate.
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:thumbsup:

I'm wondering if this could be a subset of patients whose main symptoms are caused by Central Sensitivity Syndrome. However, if most of us have this in some degree or another would that negate a definition of a subset?

I would be interested in other's perspective.

Thanks in advance.

Barb

ETA
Link
http://chronicfatigue.about.com/od/whyfmscfsarelinked/a/Central-Sensitivity-Syndromes.htm
 
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ukxmrv

ukxmrv

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Location
London
I can't see any evidence that RLS, ME or CFS are all CSS's.

I've been reading the CSS research since 2005 and the evidence as far as I can just isn't there.

What started my reading then? After a serious road traffic accident I developed Fibromyalgia on top of the pre-existing M.E. Although my injuries were well documented, obvious and easy in some cases to see the "experts" employed by the Insurance Company to fight a claim that I started all returned reports to say that I had developed a CSS. It was the same claims "experts" that claimed ME was a CSS.

Since then I have kept an eye out for research into that area and examined the evidence. It's just not there.

My feeling is that this is another version of the Psychosomatic argument moved to a slightly different arena but with some shared assumptions.
 
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barbc56

Senior Member
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MikeJackmin said:
Does CSS have any distinctive criteria - "it must include this", or "it must not include that"?
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From what I have read it seems that there is an injury or insult to the body which triggers a change in the CNS where the pain remains even though the injury has healed. This seems similar like many here who started with the flu, mono or something similar and yet the symptoms remain.

This is a good source of information that I was actually able to understand. I keep finding sources that are way to technical.

The existence of central sensitization is quite well established. What is still unknown is why it happens to some people and not others. Both environment and genetics are probably factors — aren’t they always? — but which genes, and what things in the environment? We just do not know yet.

Another unfortunate gap in our scientific knowledge is that there are no clear criteria for diagnosing central sensitization. There is no easy lab test or checklist that can confirm it.2 It could be present in nearly any difficult case of chronic pain, but it’s not a sure thing — the pain could still be coming from a continuing problem in the tissue, with or without central sensitization muddying the waters
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http://saveyourself.ca/articles/central-sensitization.php

The article states that this is a paradigm shift where the focus is not just on the actual injury but also how the nervous system is far more involved than previously thought when it comes to chronic pain.

Barb

ETA Deleted a word. I am having problems with the predictive text settings.
 
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B

barbc56

Senior Member
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3,657
ukxmrv said:
I can't see any evidence that RLS, ME or CFS are all CSS's.

I've been reading the CSS research since 2005 and the evidence as far as I can just isn't there.

What started my reading then? After a serious road traffic accident I developed Fibromyalgia on top of the pre-existing M.E. Although my injuries were well documented, obvious and easy in some cases to see the "experts" employed by the Insurance Company to fight a claim that I started all returned reports to say that I had developed a CSS. It was the same claims "experts" that claimed ME was a CSS.

Since then I have kept an eye out for research into that area and examined the evidence. It's just not there.

My feeling is that this is another version of the Psychosomatic argument moved to a slightly different arena but with some shared assumptions.
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So sorry this happened to you.

When I first applied for disability, I was told Fibromyalgia doesn't qualify you to get this. Now it is.That was ten years ago.

I would think that central sensitivity syndrome would not be in the psychosomatic camp as it's defining very real causes for conditions that were once thought to be all in your head. In the states, pain specialist are the most knowledgeable about CSS and this is slowly trickling down to the general medical community.

Fibromyalgia is also recognized by the American College of Rheumatology.

The research is out there and I will post some later. The problem in finding it is the fact that it's sometimes hidden under different illnesses. Because of this I'm beginning to think CSS is too broad as a subset but instead may be one component of our illness.

Were you ever able to get reinbursed?

Barb
 
MikeJackmin

MikeJackmin

Senior Member
Messages
132
Does CSS have any distinctive criteria - "it must include this", or "it must not include that"?
Click to expand...
From what I have read it seems that there is an injury or insult to the body which triggers a change in the CNS where the pain remains even though the injury has healed. This seems similar like many here who started with the flu, mono or something similar and yet the symptoms remain.
Click to expand...

This would seem to include any medically-unexplained symptom.

Until we can determine a more specific criteria, it would seem to include every CFS patient, and a ton of other people was well.
 
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