A lot of this article is a resumee about what symptoms are prevalent with fibro etc. (click on the 'sections'), but still the CSS theory is again propagated... *grrr* : "often classifies as a form of central sensitization syndrome.. Today fibromyalgia is considered to be a neurosensory disorder where the individual is not able to process pain in the brain."
Again and again I say: NO! I have got all my pains down. My pain levels or sensitivity are the same as they were before fibro, and I beg to assert: They were never different. When I hurt myself somewhere it hurts like before fibro. BUT: Parts of my body are hurting which didn't before, especially my tendons. I still have have an Ache when I overdo it, I have fast exhaustibility, despite a certain energy, and I have sleep problems, which have nothing to do with pain. I can't help myself, but some researchers are assuming there is a "theory of everything" and also pretending they have it already. It ain't that easy!
2) Jan/Feb 2021: An article about eye problems and their diagnostic and therapeutic relevance in fibromyalgia, what a new area I was not aware of!:
"Fibromyalgia can be associated with ocular symptoms (foreign body sensation, irritation) and visual disturbances (blurred vision), coexisting with dry eye syndrome and reduced corneal sensitivity."
"It may be that future diagnostic criteria for fibromyalgia will contain ophthalmic examination modalities. Observed ocular changes and their pathomechanisms may constitute new targets for therapy to improve the quality of life of patients with fibromyalgia."
"The findings highlight the necessity to train physiotherapists to respond to the needs of their patients with greater competence and less ambivalence."
Yup, that goes along very well with my experience of 15 physios thank you...
"We found DEGs and DEMs in FM patients through bioinformatics analysis, which may be involved in the occurrence and development of FM and serve as potential targets for diagnosis and treatment."
5) Feb 2021: Role of youtube-videos analyzed (who'd've thought!):
"Health professionals should be aware of the importance of health-related information on YouTube and provide high-quality accurate and up-to-date content."
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meant to reply before now on the CSS question - "I can't help myself, but some researchers are assuming there is a "theory of everything" and also pretending they have it already. It ain't that easy!"
There is an element of ruling other things out after finding that they did not apply. CSS may not explain all pain that people have as acute pain is still going to happen but it may present more severely in someone with fibro. But the non stimulus related pain i.e. the pain for no reason , and the amplification of pain response to stimuli does fit with CSS.
But researchers are not of the opinion that we have the aetiology sorted and now lets look at therapeutics. If only. People are trying to confirm CSS and validate but others are still looking at other options. Whether it is SFN, cytokines, neuroinflammation or any number of other things there is still research looking at other things. But CSS is the best theory we have that explains a large proportion of what connects a lot of people in our community.
Is there a spectrum or subdivision in our community? Perhaps, and if that is the case the theories and variation make more sense but more research is needed. But because CSS does not apply to you or people like you does not mean it is not credible for others.
I have thought of the parallel with the standard model for physics (our current best theory of the micro-cosmos)….. it makes a lot of sense except over there and maybe down there but everywhere else it is fine and works. Just like they are looking for a leptoquark or Z-Prime, researchers in pain science are looking for not only new theories but their equivalent "leptoquark."
I was hoping for your insight on this, thanks! - Generally I see it like you do for most researchers, they're carefully worded. And even for myself I wouldn't dismiss the pain amplification completely, it would explain about 10% of what I 'feel'.
What I'd still argue is that - as I said above - some researchers generalize too much. In the case of the above review I think the wording "often classifies as a form of central sensitization syndrome" is just about OK, because of the 'often'. But isn't the wording "Today fibromyalgia is considered to be a neurosensory disorder where the individual is not able to process pain in the brain" generalizing too much?
its a complex field so generalisation depending on audience is always required. My phrase of "the best theory we have at the moment is that fibro is a neuro issue involving over sensitisation of pain signals in the brain and there is a good body of research. But, there are some other less convincing theories that require more evidence to advance them."
This is clumsy and feels like CYA territory but it is representative of where we are at with SFN possibly getting a named entry at some point.
My issue with the sentence "Today fibromyalgia is considered to be a neurosensory disorder where the individual is not able to process pain in the brain" is the lack of the word properly i.e. "... not able to properly process pain in the brain" but otherwise I would be happy with it. In conversation when challenged with SFN or neuroinflammatory/AI theories then I would immediately drop to my other answer. "considered" is the qualifier in the sentence.
We get push back on comms all the time and especially on twitter where nuance is almost impossible. Make a statement about fibro mainly affecting women and then pushback from males, make a statement about activity and people working a job and push back from those that cannot, comment about people not having a pain that registers as a 8-10 and pushback from people being immobile or in bed through pain.
This is not me moaning but it shows the diversity of our community and the variability in our condition. We also have people interacting with research at all levels of their education and all levels of science being researched so language collisions and misunderstandings are common especially when you factor in clinical use as well.
Hmm, still thinking.. 🤔 I get that generalisation is a necessity, that CSS is not seen as the perfect answer. But does CSS with pain amplification really explain "a large proportion of what connects a lot of people in our community"?
We have pain and Ache, but also - not just me -
stiffness, heaviness, movement problems, walking, using arms, often despite strength, and following that breathing problems, cramps & nausea on the one hand and
need for much more rest and sleep, but this is ineffective and insufficient, fogginess, drowsiness, difficulty with work on the other. (Fluey-feverishness seems to indicate tiredness I've found, so I won't make that a separate point.)
We feel, but we also look ill and sick to those who can see in and around our eyes and our slow, stiff movements.
Brain fog and drowsiness may be a result of poor sleep and that can be a result of pain. That may perhaps even explain the need for much longer sleep. But is it necessarily that? OK, that might be just some sort of other oversensitivity.
But I can't see/find a connection of CSS with the rigidity / stiffness / heaviness / & other problems moving after moving or stretching too much (which may be 1'-3') or after not moving for a while (10') - do you know of any research or can you imagine?
Are people like me without allodynia, hyperalgesia, stimulus oversensitivity or pain intolerance and people like me with problems moving really in the minority?
(I'd argue the same with IBS: the symptoms are audible and visible, not just subjective-seeming pain, even if no inflammation is found. Is there research for this as CSS, or is it just an assumption? I can't find any.)
They have been looking at this for a while and it does nto explain everything but it can ling pain from fibro, IBS, vulvodynia and a number of other sources of pain. Does it fit it all, maybe not but then it would not surprise me if 10 years from now we have fibro split into sub categories or maybe not. But that would help explain some variations within our community.
As to links between other symptoms the connection can be made i.e. the amygdala could be a source of both and the over powering of the cognitive brain could be the source of some of our fibro fog. The hypothalamus is shown to be very active in acute trauma pain but is also involved in sleep.
Bottom line the brain has more potential connection to our symptoms that we realise and CSS could be at the route of this or may not be. But at the moment it is plausible from what we are understanding of how things work and interact.
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