So the progressive question discussion was very interesting. However, I thought it may be worthwhile posting about one of the simplest symptoms a person can get. Headaches. Now this is not really fibro related but a headache is one of the symptoms or conditions that we all know about or have experenced and can relate to.
but the image below which it is a pathway that is used by medics shows how even the simplest of symptoms can have a number of variables and causes, severity or implications. But it is a headache.
The top line also amplifies the need for proper langauge or definition so that people go down the correct path.
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Shows how complex things can get when you have numerous signs and symptoms ... really is a process of elimination.This shows this very clearly, many thanks 👍
Would have to agree that 'sometimes things are more complicated than they appear.' And that things are not always 'black & white.' Personally speaking, I must admit to finding specialists at the top of their pinnacle, i.e. knowing an awful lot about their own speciality, yet sometimes unable to stand back & see other problems a person may have......
I remember some 20 years ago coming across Dan Heffez as I was trying to work out what exactly our family's problems were; I thought it was Chiari 1 Malformation (but didn't have the characteristic occipital headache), yet he drew similarities between Chiari 1 Malformation & fibromyalgia, which was when I first became interested in fibro.
With the seminal paper that Milhorat et al published at about the same time they found in their 364 patients with Chiari 1 Malformation common misdiagnoses included 'migraine, fibromyalgia, and multiple sclerosis. By the time of definitive diagnosis, 215 patients (59%) had been told by at least one physician that they suffered from a psychogenic disorder.' Sound familiar?
If I remember correctly they listed 89 symptoms they found in their Chiari patients. Then take into account the co-morbidities that can exist, as with fibro, & it does indeed get very complicated.
There are also similarities between the hypermobile type of Ehlers-Danlos Syndrome (which I have) & fibro, the pain of which is similar, but without the severity of Mental Health issues some may have. It takes a good specialist to work out the disorder you may have, who works with you to find out.
Yeah that's what the neurologists always said to me "if it was anything else it would killed you by now so no point doing any scans". The truth can be awkward at times!
desquinnPartnerVolunteerFMAUK Trustee• in reply toCat00
"The truth can be awkward at times!" definetly but still needs to be said. Cancer is moving towards being a chronic manageable disease for more and more cancers and people. The big C is slightly smaller but still terrifying and devastating.
Fibro research and funding is negatively affected due to it not killing us. Another awkward truth unfortunately.
We do not have numbers for chronic pain or fibro from memory but we do have stats that say the prevalence of suicide within people ith fibro is higher than it should be. This is not shocking or surprising but it is also not typical.
In all the time I was been with the charity it was only this week that we received a query about someone within europe that was querying how they would conduct end of life planning and potentially assisted suicide. Not now but they want to plan and they have other conditions. This is also not the norm.
In a forum we always hear from individual perspectives and people speaking through the prism of their own condition and suffering. This personal bias needs to be recognised and decisions or valuations made about the community on the sum of peoples expereinces (including off forums) so that it is representative.
But if in a conversation with professionals for example and we talk about fibro does not kill you then it would be a quick pivot to those who are forced to take their lives due to this condition and having no more options left. Also the lost economic, social and cultural contribution that our maligned group expereince. But those conversations need to be real and based on the facts from the whole community. Some of those facts we are lacking as well which does not help.
It's like Prostate Cancer they say it's something you die with not of. Although my uncle did actually die of it, it took 15 years to kill him and his case wasn't considered typical of the disease.
They lady I share my studio space also had cancer at age 30, more aggressive than my husband's but "cured" at least. She is not very understanding of my conditions. She once said to me "but it doesn't take your life" and I said "no it just ruins it".
desquinnPartnerVolunteerFMAUK Trustee• in reply toCat00
I frequently talk of it taking away your choices and options as that is true of all of us no matter what the severtity with which we expereince fibro.
Isn't it a big problem, as far as I've been able to see reading the NICE guidelines about chronic pain yet again, that fibro only seems to be mentioned as causing chronic 'primary' pain, i.e. that without an underlying cause such as chronic 'secondary' pain. This seems to be a definite misnomer as fibro is the underlying secondary cause of chronic pain in such sufferers. Please see: nice.org.uk/guidance/ng193/...
& I quote,
'Fibromyalgia (chronic widespread pain) is a type of chronic primary pain'. Hmmm CRPS is also mentioned in this category!
This seems to me that fibro isn't acknowledged by some Drs to be a medical diagnosis in it's own right. I remember 20 years ago that some considered fibro a 'waste basket' diagnosis, but would have hoped by now things had changed.
If only considered to cause a chronic primary pain, then perhaps some medications that may help may not be offered fibro patients, which is rather shocking, e.g. pregabalin which was shown to help a small percentage of those with fibro if I remember correctly.
Generally the nice guidance is quite positive but as mentioned a couple of times elsewhere they failed to account for evidence that would have supported gabapentenoids and at least tramadol. There promotion of accupunture with the lack of supporting evidence and condemnation in the back pain guidance was also suspect.
Do not have an issue with chronic primary pain although there definition of it for this guidance as a novel term means there is still a lot of understanding to come and some overreach as well. I do not take it as a step back to wastebin diagnosis.
However, you cut it there are diferentiations between acute pain, neuropathic pain and the fibro/crps pain that is now under the umbrella on the other novel term nociplastic pain. It is pain that is without an acute or other clear cause and this is how fibro is differentiated. If it was down to an arm hanging off then it would be clear that this was the area to treat.
It is nuanced and hard to take sometimes but our primary pain is now a disease in its won right and it is something we need to understand more about.
On the pregabalin (and the opioid) side of things there is clear abuse potential and evidence of it hence why there has been such harsh action in Ireland. There is also harm potential. But as you say in about a 1/3rd of people it may help. So if we could target that group better the efficacy rates would be higher and the outcome numbers better but we are not there. I do not agree with the NICE guidance on there lack of evidence on this. I also think they have rished to wrap chronic primary pain into a little bow tied collection that means that we have a large group of patients treated as a monolith with fewer tools as a result and a higher burden and more negative outcomes are a possibility.
Thank you for your explanation. An interesting article I read in the Lancet: thelancet.com/journals/lanc... rightly or wrongly these authors suggest that nociplastic pain remain[s] unrelated to the new category of chronic primary pain.
An understanding of nociplastic pain does indeed seem to be the way forward; still not too sure about fibro being 'just' considered a chronic primary pain.
Do not think fibro is being considered just chronic primary pain but those guidelines are pain focussed. But the new IASP definition of nociplastic pain does for the first time bring in non pain symptoms into consideration like diusrupted sleep and cognitive issues among other things.
With novel definitions like this there is still some movement to be had on where they overlap and function together. However I think the authors were advocating that they do come together. We have different agents behind these definitions and the IASP, ICD (Who) and the likes of NICE will look at how they apply to different patient populations.
Functional Pain from my understanding does align with CPP as it is "pain and related symptoms and disability without clear structural or disease etiology"
The opening proverb could almost be my mantra epecially in relevance to the progressive debate. but the other points about reductionist attitudes and poorer outcomes as well as dissatisfaction on both sides of the conversation.
I also like & agree with the Chinese proverb!....'The beginning of wisdom is to call things by their right names.' This article was from 2014 & discussing a paediatric population & Schechter seemed dissatisfied with the name 'functional pain,' & it's prior connotations with psychological problems, yet others are still describing nociplastic pain as 'functional pain,' which I hope doesn't do fibro sufferers a disservice if this is remembered wrongly by some Drs.
I think from what I've been reading, & re-reading (& sometimes feel like I'm going around in circles) that understanding pain can be a very difficult thing. There are some hypotheses out there that may explain the pain of fibro such as Small fibre neuropathy: pubmed.ncbi.nlm.nih.gov/303... & then are 'fibro & M.E. manifestations of the same spectrum disorder or separate clinical entities': ncbi.nlm.nih.gov/pmc/articl...
Add to the mix that joint hypermobility 'may provide an important aetiological connection between fibromyalgia, ME/CFS and multiple systemic symptoms....' & the dysautonomia found in hEDS & fibro, which leads me to look again at Mast cell activation syndrome which can be found in some of us with the hypermobile type of Ehlers-Danlos Syndrome (hEDS): ncbi.nlm.nih.gov/pmc/articl... Association of mast-cell-related conditions with hypermobile syndromes: a review of the literature.
Sometimes I think with 'syndromes' some of us are sat beneath a very large umbrella. I remember my last GP, who was very tolerant of me bringing him medical papers about Chiari 1 Malformation, which I became convinced had to be associated in some with Ehlers-Danlos Syndrome, being quite prophetic in saying, well EDS is a syndrome, & in 10 years Chiari 1 Malformation will likely be found in some with EDS. Only took me 9 years to raise awareness of this association here in the UK!
If interested Dr Anne Maitland has some excellent webinars on you tube about Mast Cell Activation Syndrome (MCAS) by the Ehlers Danlos Society, see in particular 'Mast Cell Activation Syndrome: More than “just allergies” July 2018. Interesting to see that MCAS can present with brain fog, fatigue & sleep problems together with PoTS, urinary & bowel problems, joint pain & muscle aches.
I went into hospital with a history of hormonal migraines, after one didn't go away after the usual three days. So I subverted the system a bit. After CT scan, lumber puncture etc and being observed sent home again, with a constant headache. A neurologist told me I was 'just a migrainer' and was diagnosed with everyday headache. Three years later, it has improved, possibly due to calmer circumstances, or the low dose Nortriptyline I was put on for Fibromyalgia.
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DWP - they are not all machines, some are human. I was one.
wits end 
Union - good idea or more trouble than worth it?
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