Central Sensitization Syndrome

Hip

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OK, I was not aware that that central sensitivity syndrome is being very prematurely used in clinical settings. I thought it was just a research concept.

So you are saying that instead of calling diseases functional disorder / MUS, doctors are now beginning to label them as central sensitivity syndromes in Canada, and the US is following suit?

Is this just individual doctors doing this, or is it official policy and categorization of the heath services? I can't find any reference to central sensitivity syndrome on UK NHS websites.
 

Effi

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So you are saying that instead of calling diseases functional disorder / MUS, doctors are now beginning to label them as central sensitivity syndromes in Canada, and the US is following suit?
It's been going on in Belgium for years. I'm afraid we're sort of a front-runner in using CSS as a label. They thought CSS was a convenient model to explain Chronic Pain Syndrome, and I'm not sure how it happened exactly, but they just copy-pasted it to all MUS. Lately what they say over here is: 'We know what CSS is, but we just don't know what to do about it!' Delusional is what I call it.
 

ScottTriGuy

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If they were doing a research study of CSS, I think they'd have to get approval of a Research Ethics Board to review and protect participant's health.

Yet, seemingly in British Columbia, Canada, they can foist it on patients without REB approval???
 

Kati

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If they were doing a research study of CSS, I think they'd have to get approval of a Research Ethics Board to review and protect participant's health.

Yet, seemingly in British Columbia, Canada, they can foist it on patients without REB approval???
They simply picked a few papers on CSS, decided me fits the CSS criteria. End of story. No labs, no biomarkers needed, just a biased doctor opinion.
 

Effi

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"It may be the most exciting concept in neuroscience that most people have never heard of. Eric Kandel’s Nobel prize in 2000 on ‘neuronal learning’ in the brain laid the basis for it. It’s become a possible model for Multiple Chemical Sensitivity (MCS) and Post Traumatic Stress Disorder (PTSD). Dr Leonard Jason believes it may explain Chronic Fatigue Syndrome (ME/CFS) as well..."
Thanks @Asa and @Hip , I was wondering where the theory stemmed from.

A quick wikipedia browse shows the following:
In "central sensitization," nociceptive neurons in thedorsal horns of the spinal cord become sensitized by peripheral tissue damage or inflammation. This type of sensitization has been suggested as a possible causal mechanism for chronic pain conditions. The changes of central sensitization occur after repeated trials to pain. Research from animals has consistently shown that when a trial is repeatedly exposed to a painful stimulus, the animal’s pain threshold will change and result in a stronger pain response. Researchers believe that there are parallels that can be drawn between these animal trials and persistent pain in people.
So this hypothesis comes from mouse models. Lately all I read about mice models is that they're useless as a comparison to humans. Is this really what they're basing their entire hypothesis on? That's pretty darn weak if you ask me.
 

Kati

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don't forget lower back pain, migraine, painful menstruation, endometriosis, whiplash, pain after cancer remission, unexplained shoulder pain, arthritis, arthrosis, ... (I can go on but I won't)
The thing that bothers me most is that diseases which have fda approved treatments do not get labelled as CSS. For instance rheumatologic diseases. Sure enough, fibromyalgia is co-morbid with many rheum conditions. RA, lupus, Sjogren's. Do these patients get the label of CSS? I auggest 'not as likely'. These patients are offered treatments.
 

Hip

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I am just wondering if this is really such a bad thing, given the circumstances.

After all, at least central sensitization is a proposed physical basis for diseases like ME/CFS and IBS, which is a vast improvement on somatization, which posits that ME/CFS, IBS, etc is caused by psychological issues — psychological issues that somehow mysteriously transform into physical symptoms.

There is certainly nowhere near enough evidence to say that ME/CFS, IBS, etc are due to or involve central sensitization; however, at least with central sensitization the patient cannot be blamed for mentally causing their disease, as they can be with the somatization view.

Given a choice of the two, I'd much rather my doctor describe ME/CFS as a central sensitization syndrome than a somatization process.
 

Gingergrrl

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I am just wondering if this is really such a bad thing, given the circumstances.
I think it is a bad thing b/c it means that doctors will give you this label and it is an excuse to not continue to look any further. If I applied it to myself, I would never have the opportunity to continue trying to figure out if I even have ME/CFS vs. another illness.

I have given the boot to all docs who were not helpful and it took me close to two years to start to get any help and now three years to really narrow it down. It is 100% certain I have POTS/severe low blood pressure & autonomic problems and MCAS. It is not yet 100% certain if I have a restrictive lung disease and am seeing a pulmonologist in eight days and hoping to get testing to eventually rule it in or out.

If I have a lung disease, treatment is totally different than if I have ME/CFS, or if I have severe dysautonomia at the core, which is why I am going up to Stanford. None of this would be possible if I was just told I have "CSS" and sent on my merry way.

Granted I am incredibly persistent, do my research, and do not take no for an answer but I also have a health system with endless options (provided you have insurance, can travel to see docs outside of your area and can pay for things that insurance denies- which is just about everything.) I still may end up never knowing what is wrong with me but it will not be for lack of trying.

If a doc told me I have CSS, I would be out the door whether it was a random doc or the world renowned Mayo Clinic. But if in Canada, this is the only diagnosis patients are being given and no other opportunities, what are they supposed to do? Thank God, Kati, was able to come to the US for some assessments and treatment but not everyone can do this.

This thread is really making me angry but no idea how to help! (not at you Hip- just the idea of it.)
 
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Hip

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I think it is a bad thing b/c it means that doctors will give you this label and it is an excuse to not continue to look any further.
If that is the case, then I agree it would be a bad thing. Perhaps we need to get feedback from more patients who have seen doctors who use the term CSS, and see what sort of help, diagnosis and treatment they obtained (or failed to obtain).

There is the suggestion in this thread that a doctor will just label you with CSS, and then offer a simple generic treatment like SSRIs, and show you the door. But is this the reality?


I would hope that CSS is used just as an umbrella category to classify diseases like ME/CFS, IBS, interstitial cystitis, multiple chemical sensitivity, etc, much in the same way we use autoimmunity as an umbrella category to cover diseases like rheumatoid arthritis, lupus, multiple sclerosis, etc.

Your doctor may tell you that you have an autoimmune disease, but your diagnosis would not stop there, because it is important to diagnose the particular autoimmune disease you have, as this will dictate which treatment you receive.

Similarly, treatments for IBS are different to treatments for ME/CFS, so a doctor cannot just give you a generic CSS diagnosis, but will need to diagnose and treat the particular CSS disease you have.
 

cmt12

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And even if central sensitization is present in ME/CFS, we still need to ask what dysfunctional mechanism is causing central sensitization.
The mechanism that causes this is the fight, flight, freeze survival response. This mechanism requires that our senses be up-regulated to the highest degree for obvious reasons.
 

Gingergrrl

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If that is the case, then I agree it would be a bad thing. Perhaps we need to get feedback from more patients who have seen doctors who use the term CSS, and see what sort of help, diagnosis and treatment they obtained (or failed to obtain).
I have never encountered any doctor or patient being given this diagnosis in the US (yet) and am hoping Mayo does not set this into motion. But I do think that doctors who buy into it will use it as an excuse not to look any further for alternate diagnoses or for other issues with PWME (for example someone with ME has a non-ME medical issue and it is autonomically dismissed.) I think this diagnosis is a slippery slope and not really helpful for anything.

I don't think this term as used by Goldstein was meant in the same way and I don't even think the people using it now are aware that it was used before in another context. I think it is now going to be a catch-all term for insurance companies to deny testing or doctors to deny investigating medical issues further.
 

Dufresne

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Yes, a "non-psychological" illness that can only be "cured" with "psychological" treatments and the ever-ready exhortation to "exercise more" and "reduce stress". :bang-head:
I don't know if anyone is talking cure. As far as pain goes, it's believed that non-medicinal options are worth exploring, as opioids can be extremely harmful for many over the long haul. And CCS started as a pain syndrome. As for chemical sensitivities, I think there's some anecdotal evidence that these "psychological" approaches may be beneficial.

I also believe there's good anecdotal evidence of excitotoxicity and kindling in ME; I like Goldstein's work; and I think it offers a decent way of looking at many of the symptoms we face with this disease.

Perhaps I'm not bothered by the idea of CSS because I:
a) basically know what's wrong with me
b) am able to treat it
c) don't give a crap what any doctor thinks about it

However I acknowledge it would be a horrible thing if docs were to start diagnosing CCS and leaving it at that. I don't think it should be anything more than a possible way of looking at these conditions.
 

Hip

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I don't think this term as used by Goldstein was meant in the same way
I don't think Dr Jay Goldstein used the term central sensitivity / sensitization; his term for ME/CFS and its related diseases was neurosomatic disorder.

Looking at the long list of diseases that Goldstein categorizes as neurosomatic disorders (starting on page 3 of his book Betrayal by the Brain), you see that his list seems to include pretty much all of the diseases that are classified as central sensitivity syndromes.

So it looks like Goldstein's neurosomatic disorders are pretty much the same group of diseases as central sensitivity syndromes.

Goldstein's notion of the mechanism behind neurosomatic disorders is slightly different to the concept of CSS. He defines neurosomatic disorders on page 6:
Essentially, neurosomatic disorders are neurologic illnesses. They are caused by a complex interaction of genetic, developmental, and environmental factors.

The mechanism of symptom production can be conceptualized as impaired sensory information processing...
So Goldstein states that the processing of information received from the senses is impaired in neurosomatic disorders. Whereas in central sensitivity syndromes, the input received from the senses is thought to be impaired in a more specific manner, namely that the sensory input is over-amplified, due to sensitization.

But other than that, the concept of neurosomatic disorders and the concept of central sensitivity syndromes are very similar, and the diseases involved appear to be the same.


Interesting that Goldstein thinks psychological (developmental) factors play a causal role in neurosomatic disorders.
 

Gingergrrl

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As for chemical sensitivities, I think there's some anecdotal evidence that these "psychological" approaches may be beneficial.
Do you mean for mast cell disorders with sensitivities to foods and smells or something else? I am not sure how psychological approaches would help with this b/c it seems like an immune system issue where the immune system is completely shifted to the Th2 side.

I like Goldstein's work; and I think it offers a decent way of looking at many of the symptoms we face with this disease.
I like a lot of Goldstein's work as well which is why I am so curious to figure out the similarities and/or differences. His work seemed to be based on medications though.

Perhaps I'm not bothered by the idea of CSS because I:
a) basically know what's wrong with me
b) am able to treat it
c) don't give a crap what any doctor thinks about it
I guess I am bothered by it b/c I am completely unsure what is wrong with me and now have several tests with abnormal results. I am awaiting further testing to try to clarify and would be very upset if I did not have the opportunity to investigate further until I am satisfied that I have done all I can.

So far I have not been able to find effective treatments for my autonomic issues and extreme shortness of breath.

I don't give a crap about any individual doctor in the sense that when I see one who cannot help me or who were to spout off nonsense, I am done with them. But I do care what my treating doctors think and about what testing they order and how they conceptualize my treatment going into the future.
 

Gingergrrl

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I don't think Dr Jay Goldstein used the term central sensitivity / sensitization; his term for ME/CFS and its related diseases was neurosomatic disorder.
I know his term is neurosomatic medicine but I thought he also used the term CCS in his books. I no longer have the books b/c we lost everything to mold or I would check. I might Google it but didn't have a chance yet today.

So it looks like Goldstein's neurosomatic disorders are pretty much the same group of diseases as central sensitivity syndromes.
That is interesting and I was curious about that. But he might be looking at the same symptoms but treating them a different way?
 

Gingergrrl

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I might Google it but didn't have a chance yet today.
Just Googled it and didn't find any links except for one re: fibromyalgia so maybe I am wrong re: that term being linked to Dr. Goldstein. I definitely do not want to misquote him or any doctor!
 

Hip

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I know his term is neurosomatic medicine but I thought he also used the term CCS in his books.
I only have Betrayal by the Brain as a hardcopy, and no mention of CSS in the index.



I have just noticed that if you look at page 3 of Goldstein's 1996 book Betrayal by the Brain, Dr Goldstein actually quotes Professor Muhammad Yunus:
Neurosomatic disorders are the most common group of illnesses for which patients consult physicians (Yunus, 1994).
So it looks like Goldstein was either inspired/influenced by Yunus, or got his neurosomatic ideas directly from Yunus.



Certainly Professor Muhammad Yunus, who first proposed the concept of a central sensitivity syndrome (CSS) to cover ME/CFS and may related diseases, plants CSS firmly with the biopsychosocial model — see his 2007 paper:
Fibromyalgia and overlapping disorders: the unifying concept of central sensitivity syndromes.
Yunus MB

Abstract

OBJECTIVES:
To discuss fibromyalgia syndrome (FMS) and overlapping conditions, eg, irritable bowel syndrome, headaches, and chronic fatigue syndrome, within the concept of central sensitivity syndromes (CSS).

METHODS:
A critical overview of the literature and incorporation of the author's own views.

RESULTS:
The concept of CSS seems viable. It is based on mutual associations among the CSS conditions as well as the evidence for central sensitization (CS) among several CSS members. However, such evidence is weak or not available in other members at this time, requiring further studies. The biology of CSS is based on neuroendocrine aberrations, including CS, that interact with psychosocial factors to cause a number of symptoms.

CONCLUSIONS:
CSS is an important new concept that embraces the biopsychosocial model of disease. Further critical studies are warranted to fully test this concept. However, it seems to have important significance for new directions for research and patient care involving physician and patient education. Each patient, irrespective of diagnosis, should be treated as an individual considering both the biological and psychosocial contributions to his or her symptoms and suffering.