Morning
My daughter read an article that said American doctors had found that fma is not a nurilogical problem as priviously thought but is actually caused by a person having to many blood vessels. Unfortunately she read this on line somewhere and now can't find the link. Has anyone else read this? If you have and you have the link, could you put it up please?
Hi there, I think I did come across this article, but have just searched the web for it and can't come up with anything though. Maybe our super sleuth Ken will be able to come up with something. I think though that it wasn't a conclusive finding from what I can recall, just a line of research......but then I may well be wrong.
Sorry not to be of more help !!
Foggy x
I'm being treated by a Neurologist xx
I too have been treated by a neurologist and I don't think he's the sort of man who would treat if he didn't think it was relevant 😶
Not sure but is this what your daughter was referring to. I've found several links to articles discussing a piece of research in America but it wasn't that we had too many blood vessels that was the conclusion. More that we have "excessive sensory nerve fibers around specialised blood vessel structures located in the palms of the hands". Not sure it makes much sense to me as one article said it related to women but as we know many men have fibromyalgia. And also if it is about nerves around blood vessels in the hand how come the pain spreads anywhere around the body. Although of course the blood travels the entire body. Anyway these are what I found
intidyn.com/news-events/new...
healthline.com/health-news/...
medicaldaily.com/breakthrou...
Margaret 
P.S. Just re-read one of the articles and it makes much more sense actually. That could explain why my hands are painful 24/7, I just put it down to arthritis. Article also says there are more blood vessels in the hands and feet. And it could explain why my aches and pains have been so much worse these past few weeks as the weather is getting colder and damper which contributes to the cold feeling.
Hello Nokidding,
If you Google ' Fibromyalgia Mystery Finally Solved' you'll find the article but this has been circulating for a while and I wouldn't like to comment either way without reading the research again.
I know that there is much more research to say it is neurological with the problems neurotransmitters at this time. I'll try to read it again and refresh my memory then try to give an analytically view on it as best I can if you like
Hope you find it OK
Best Wishes
Emma
The other thing to mention is that the articles say the research claims the issue is to do with excessive sensory nerve fibres around blood vessels which means it is neurological as it is more to do with the nerve fibres than the blood vessels themselves.
Also they don't say it's not neurological. Instead they refer to the research saying the condition is not in the head, ie is not psychological.
These are the same or similer to the articles that i found and all dated back at least a year.
So there may be something new and i just havnt found it.
Yes the links above all date to around the middle of 2013.
I have recently seen articles relating to low blood volume in ME and fibro patients causing orthostatic intolerance. Also this article about low blood volume being a typical situation with us.
cortjohnson.org/forums/reso...
But I don't recall seeing and can't find anything about too many blood vessels. xx
This looks interesting, but my brain is not in the mood to study. Ive pinned it and will have a look at it later.
I have quite a lot pinned about fibro and ME but cant find anything there that would help.
The low blood volume in ME has been around since Bell and Streeten around 97/98 ncf-net.org/library/Bell-St... orthostatic intolerance linked with
vasoconstriction not happening as it should further evidence of autonomic nervous system irregularities.
Yes it has Ian. The article in the link I gave above is a recent piece on the topic by David Bell who was involved in the original study as per the link you have provided.
I found his last comment in his recent article very interesting, if a little depressing . .
"All of this is interesting, but just a part of the 9,000 studies that have been done and forgotten in the history of ME. I think this is a shame because there is something important about the low blood volume in ME patients. And it has a cause, even though it has not been found to date. Actually, it has not been looked for, as far as I can tell"
"After correction for individual body size, the various measures of ‘blood pool volume’ in the heart were significantly lower in patients than controls"
meresearch.org.uk/our-resea...
When looking at other symptoms such as heart arrhythmia, meeting POTS criteria then blood volume will appear looked for or not.
Thank you ladies, something both I and my daughter have found is that the pain in our hands is much less after we give blood which makes sense re sensors around blood vessels or more blood vessels. A bit less blood would lessen inflammation or pressure. Just musing here! Anyway those links make interesting reading. With all the changes to DLA to PIP and universal credit coming up any paperwork to prove to assessors that we are not head cases is going to be useful
Thanks again for your replies and links x
Hi there nokidding I remember this been posted and shared by my US friends in
2013 Not sure if there is any recent update it may be worth checking out.
Fibromyalgia Mystery Finally Solved! Researchers Find Main Source of Pain in Blood Vessels
Researchers have found the main source of pain in Fibromyalgia patients, and contrary to what many believe, it does not stem from the brain. The findings mark the end of a decades-old mystery about the disease, which many doctors believed was conjured in patients’ imaginations. The mystery of Fibromyalgia has left millions of sufferers searching for hope in pain medications. Up until recently, many physicians thought that the disease was “imaginary” or psychological, but scientists have now revealed that the main source of pain stems from a most unlikely place- excess blood vessels in the hand.
The discovery may lead to new treatments and perhaps even a total cure in the future, bringing relief to as many as 5 million Americans thought to have the disease. To solve the Fibromyalgia mystery, researchers zeroed in on the skin from the hand of one patient who had a lack of the sensory nerve fibers, causing a reduced reaction to pain. They then took skin samples from the hands of Fibromyalgia patients and were surprised to find an extremely excessive amount of a particular type of nerve fiber called arteriole-venule (AV) shunts.
Up until this point scientists had thought that these fibers were only responsible for regulating blood flow, and did not play any role in pain sensation, but now they’ve discovered that there is a direct link between these nerves and the widespread body pain that Fibromyalgia sufferers feel.
The breakthrough also could solve the lingering question of why many sufferers have extremely painful hands as well as other “tender points” throughout the body, and why cold weather seems to aggravate the symptoms. In addition to feeling widespread deep tissue pain, many Fibromyalgia patients also suffer from debilitating fatigue.
Neuroscientist Dr. Frank L. Rice explained: “We previously thought that these nerve endings were only involved in regulating blood flow at a subconscious level, yet here we had evidences that the blood vessel endings could also contribute to our conscious sense of touch… and also pain,” Rice said. “This mismanaged blood flow could be the source of muscular pain and achiness, and the sense of fatigue which are thought to be due to a build-up of lactic acid and low levels of inflammation fibromyalgia patients. This, in turn, could contribute to the hyperactivity in the brain.”
Current treatments for the disease have not brought complete relief to the millions of sufferers. Therapies include narcotic pain medicines; anti-seizure drugs, anti-depressants and even simple advice such as “get more sleep and exercise regularly.” Now that the cause of Fibromyalgia has been pinpointed, patients are looking forward to an eventual cure. Other expressed frustration about how much they had suffered already:
“When are they ever going to figure out that things are never “all in your head?” said one commenter. “Whenever something doesn’t fit in their tiny little understanding, they belittle the patient and tell them they are crazy. People have suffered through this since they were invented. Prescribing SSRIs for everything is not the answer any more than a lobotomy or hysterectomy was.”
The announcement has the potential to unlock better future treatments and undoubtedly has patients all over the world rejoicing that the mystery of Fibromyalgia has finally been solved.
MS has finally been solved more times than I can count while having in common with Fibro little or no understanding of what causes it.
I remember reading this article a couple of years ago, however, it did not offer any medical information or investigation reports so I simply took it with a pinch of salt.
The problem is that we again have the chicken or the egg scenario.
Are the fibres causing the problem with the blood vessels or is it the other way round.
This dates back to oct 2014 and shows changes to the brain that were apparently invisible on the old MRI scanners.
pinterest.com/pin/484207397...
I also found one that says that it is the fibres in the eyes that are causing fibro.
I have another that says that brain damage could have caused it and yet another that says it is a fault in the Mitochondrial DNA.
So please excuse me for being sceptical.
I will wait and see.
Sue x
I agree Sue. There is a lot of research out there about what is going on in people with the condition (or should I say group of conditions?) but none of it seems to get to the root of the original cause.
A few months ago I listened to some of the talks on the Abundant Energy summary. One of which was given by Dr Sarah Myhill and even she made this point. Many of the issues researched seem to relate to various points in a whole cycle of biological events (sorry can't remember the exact phrase she used), but none of it makes it clear as to what or where in that cycle the starting point is (yet!).
I guess like most of us I listen to as much of the research as I can and whilst most of it seems to make sense, I'm not going to get my hopes up until someone manages to find exactly what that starting point and presumably therefore the cause is.
Margaret
The problen that reasearcher have is thar any one of thesespossible causes could be
onlinelibrary.wiley.com/sto...
This is the full article. Have the advantage of being a biologist and this is a genuine peer-reviewed journal. This is the first time a unique pathology has been discovered for fibro. That means you could test for the presence of too many sensory fibres innovating a special type of blood vessel (AV shunts) in the palms of the hands, and firmly diagnose fibro as a result I.e. There are no other conditions which present with this abnormality.
This is incredibly heartening. The AV shunts play a big role in regulation of blood flow, and having too many makes us incredibly over-sensitive to cold conditions. When cold, the shunts open and let oxygenated nutrient-rich blood bound for the skin effectively bypass the skin and head straight back to the venules, and then veins, which should be carrying nutrient depleted waste-product rich blood back to the heart. Ever wondered why you get incredibly pale when you have a flare-up? These nerves are opening shunts which let the blood bypass our skin. I think we finally have an an answer.
I spent quite a while summarising the paper in plain English for myself. I'm also a bit of a geek; I read all the fibro papers so have a fairly good idea of the latest research. Here's my understanding.
The presence of too many specialist sensory fibres innervating AV shunts - a type of blood vessel found in the palms of the hands and feet - is a unique indicator of fibro. The debate on whether fibro is 'real' or not really is over. The study - like all studies worth their salt - looked at the possibility that having fibro and having too many of these fibres was a conicidence. The degree of confidence that this is not the case is higher than the accepted scientific standard, therefore this is not a random association, this can be taken as a firm relationship. Fibro = too many of these fibres.
The study team recently discovered that these fibres play a significant role in control and direction of blood flow to the skin and muscles (in everyone - not just fibro). The logical inference is that too many of these fibres cause the blood to be directed about the body in inappropriate ways.
They theorise that this inappropriate bloodflow is starving parts of the body of oxygen and nutrients and causing ischaemia. Ischaemia (well understood process) happens when tissues are starved of blood and effectively suffer damage as a result due to waste products. Interestingly, when normal bloodflow is restored, more damage can be done, as the restored blood brings with it white blood cells to repair the damage which release inflammatory factors (which cause pain). This would explain the deep, throbbing muscular pain we suffer, and why our muscles don't feel as if they have the stamina they should have (lactic acid build-up and insufficient bloodflow to remove it.)
Bloodflow abnormalities can also explain the myriad of symptoms we suffer elsewhere.
They also theorise that the excessive sensory input from having too many specialist nerves in the hands and feet is the 'smoking gun' which keeps central sensitisation in the brain and spinal cord going. Sensitisation should cease when the external stimulus (the reason for the sensory input) is removed. But, with too many nerves, our baseline sensory input is presumably much higher than the norm, and could be the thing keeping our brains and spinal cords sensitised to the slightest sensory input elsewhere.
There's lots more in the paper, but the next time someone asks me what fibro is I'll probably tell them it's a nervous system disorder caused by an excess of the sensory nerves which control bloodflow to the skeletal muscles, skin and brain. As a result, our muscles don't get the blood they need and can't function normally and our central nervous systems become overly sensitised to the smallest of inputs.
And that's what I'm sticking with!
Until I'm not! Lol 😉
There is hope! A lot of it!
In the meantime, keep out of the cold?!
Wow! I dont know what to say. I sort of believed that being highly sensitive (which i believe i am) it is said by psychiatrist elaine aron, that we have 15 major nerve ganglia in our brains when the rest of the world has 3. This is how she describes Highly Sensitive People. This is why we hear, smell, taste, touch more than most. I have always felt pain very deeply hence my cursing when i bang my toe. Perhaps this is all comnected. It sort of can be connected with this blood flow thing. So interesting!!!!!
I have struggled my entire life to understand myself. Always being put down to being negative because i see more than the average person. A difficult eater as a child senstive to texture of food, smell, etc. my daughter and i considered aspergers. Maybe this is all connected!
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