The authors got right to the point. Most people think fibromyalgia (FM) is a central nervous system condition characterized by a hypersensitive pain response and a balky pain inhibition system – and, indeed, all that is happening.
There’s a lot more going on, though. What about all those pesky autonomic nervous system findings? The low heart rate variability findings, the puny baroreflex response, the chronotropic incompetence, the strange tilt table results? What role might they play in the pain and other symptoms present in FM?
The authors of this study focused on a key player in the cardiovascular system – the baroreflex response. The baroreflex (baro=pressure) system is composed of a series of receptors in the heart which respond to changes in blood pressure. When blood pressure becomes elevated, the baroreceptors tell the heart rate to decrease. Low blood pressure, on the other hand, reduces baroreceptor activity – causing the heart rate to increase.
When we stand, and blood pressure in the upper body momentarily drops, the baroreflex system tells the heart rate to increase. The system responds quickly – in the fractions of a second – and is constantly adjusting itself. It plays a key role in our ability to remain upright and deal with stress – but that’s just the beginning.
Interconnected Systems
It’s not just about blood pressure. The baroreceptors interact with and influence an amazing number of systems – most of which appear to be involved in fibromyalgia and ME/CFS.
Baroreceptor activation inhibits the activity of the fight or flight, or sympathetic nervous system (SNS). (Low blood pressure on the other hand increases SNS activity).
Plus, the baroreceptors also regulate blood vessel functioning. When blood pressure rises, the baroceptors transmit a signal to open them up (dilate them).
Baroreceptor activation also tamps down brain activity. This occurs when signals sent to the brainstem are transmitted to the amygdala, insula, anterior cingulate and cingulum. Baroreceptor activation also appears to inhibit pain levels and reduces emotional volatility. Studies suggest that having more sensitive cardiac baroreflex responses may result in increased pain inhibition; i.e. have less pain.
The signals the baroreceptors emit also end up in a very interesting place for FM, ME/CFS and possibly long COVID – the the brainstem. From there, the signals activate motor neurons associated with the vagal nerve (another possible factor), and inhibit sympathetic nervous system neurons in the spinal cord.
From heart rate and blood pressure to the fight or flight response, to the blood vessels, to brain activity and pain levels, the baroreceptors do far more than just adjust adjust our blood pressure.
The Study
The Gist
- The baroreflex response consists of receptors in the arteries surrounding the heart which respond to changes in blood pressure.
- Studies suggest, though, that the baroreflex response also helps regulate sympathetic nervous system activation, heart rate variability, blood vessel functioning and brain activity.
- They also suggest that altered baroreflex activity would contribute to increased pain, fatigue and sleep issues.
- This was the first fibromyalgia study to assess all three branches of the baroreflex system. Pain and mental stress tests were used to determine how well the baroreflex system was doing.
- Every symptom they measured – pain, fatigue, sleep and mood – was worsened when the baroreceptors failed to activate normally in the people with FM.
- They asserted that the study confirmed that “deficient autonomic cardiovascular regulation’ was present in FM.
- The authors proposed that balky baroreceptor activation may be implicated in the pain, fatigue, sleep and mood problems in FM.
- Since baroreceptor activation also significantly affects heart rate variability (HRV) – which tends to be low in both FM and ME/CFS – baroreflex problems have be contributing to the low HRV in FM.
- Since deficient baroreflex responses have also been found in ME/CFS and POTS, this finding links together FM, POTS and ME/CFS.
- These diseases also share autonomic nervous system issues, female predominance, small fiber neuropathy, exercise issues, and cognitive, sensory and pain problems.
After doing baseline tests, the Spanish research group put 40 people with fibromyalgia and healthy controls into a state of stress with pain (cold water hand plunge) and mental tasks while assessing their baroreflex responses and their symptoms (pain, fatigue, etc.).
The goal was to see how the three parts of the baroreflex response responded. If the responses of the FM patients were blunted relative to the healthy controls, that could help explain why people with FM experienced more pain (reduced pain inhibition) and fatigue, experienced more emotional ups and downs, and had more difficulty sleeping and relaxing (increased SNS activation).
Results
“Taken together, results confirm the notion of deficient autonomic cardiovascular regulation in FMS and implicate aberrant baroreflex function in its symptoms.” The authors
The study found that all three branches of the baroreflex response were inhibited – both at rest and when stressed in the FM patients. The authors’ conclusion – the autonomic nervous system in the FM patients’ cardiovascular systems was not working correctly (i.e. they had “dysfunctional autonomic cardiovascular regulation”).
Every symptom they measured – pain, fatigue, sleep and mood – was worsened when the baroreceptors failed to activate normally. Interestingly, the mental stressor – an arithmetic test – produced more impaired baroreceptor activation than the pain (cold pressor) test. The arithmetic test resulted in impaired heart rate, altered heart muscle contraction and blood vessel regulation in the FM patients. It suggested that mental stress, in particular, dramatically affected the functioning of the autonomic nervous systems in people with FM.
The results jived with a 2017 study which found that a reduced baroreflex response was associated with reduced quality of life in FM. It suggested that impaired baroreflex activity may even be inhibiting FM patients from carrying out their daily activities (e.g. anything that involves standing).
The effect the baroreceptors have on heart rate variability (HRV) stands out. HRV measures the gaps between our heartbeats and is used to assess the functioning of the stress response. Higher HRV indicates that a supple and responsive autonomic nervous system is present. Lower HRV suggests an impaired ANS. Lower HRV is associated increased risk of mortality over time. Reduced HRV is one of the most consistent findings in both fibromyalgia and chronic fatigue syndrome (ME/CFS).
Are the baroreceptors sending the wrong signal to the brainstem? Or is it getting messed up in the brainstem? Or is something else going wrong?
Note, again, how closely tied in the baroreceptors are to the stress response. They’re constantly monitoring our blood pressure. When it goes up – a sign that some sort of stress is happening – they reduce the heart rate, dilate our blood vessels, and increase our heart rate variability. While they are doing that they’re also reducing the excitability of the brain and telling it and the pain response to calm down. The baroreceptors appear to be designed to improve the resilience of our systems when they are put under stress.
Many issues potentially could be linked with a balky baroreceptor response. A good part of the pain in FM, for instance, could be associated with the reduced pain inhibition – which is impaired when baroreflex sensitivity is reduced -as was found in this study. Increased heart rates during standing or at baseline, blood vessel flows, the activation of the fight of the fight or flight system. the ability to get a deep sleep — all could be affected.
The baroreceptors interact, then, with several potentially important aspects of ME/CFS and FM – the autonomic nervous system, blood vessels, heart, brainstem, limbic system, and the vagus nerve. .
Do autonomic nervous system issues link all these diseases together?
These findings also potentially link FM, ME/CFS, POTS and, potentially, long COVID together. Reduced baroreflex responses have been found in adolescents and adults with ME/CFS and/or postural orthostatic tachycardia syndrome (POTS), and autonomic nervous system issues are cropping big time up in long COVID. Female predominance, small fiber neuropathy, exercise issues, cognitive, sensory and pain problems all pervade these disorders. Someone recently suggested that fibromyalgia the more pain dominant side of all these conditions.
Of course, autonomic nervous system problems are rife in these disorders. While it’s hardly been noticed, evidence of orthostatic intolerance (increased symptoms while standing) have been building in fibromyalgia – long perceived as simply a pain disorder – for years.
Tilt table tests have found problems with blood pressure regulation, dysautonomia, low blood volume, sympathetic nervous system hyperactivity, chronotropic incompetence, even fluid pooling in the lower extremities (a classic finding in POTS).
Despite the fact that medications and other treatments can help with these symptoms, remarkably little of this has seeped down to doctors. A Health Rising 2018 survey of over 330 people with FM found that 84% of FM patients reported their doctor had not suggested a tilt table test.
Resources
Check out an easy home test to assess whether you might have orthostatic intolerance.
- Should Everyone with Chronic Fatigue Syndrome or Fibromyalgia Be Tested for Orthostatic Intolerance?
- A Home Test for Orthostatic Intolerance / A Home Test for POTS / A Home Test for Hyperventilation.
Football players have a new device – called a Q-collar – that compresses the neck arteries and slightly increases the brain’s blood volume in order to prevent concussion injuries; the increased brain volume prevent the brain from sloshing around when they are hit in the head. It occurs to me that this could be very helpful for us. One problem might be that the players are to wear it only during play. Perhaps if we wore it all of the day that we are upright our CFSsystem would begin to compensate for it, and like so many treatments, it would work for a little while and then lose effectiveness. Thoughts?
@Cort: Thanks for bringing up this wide variation of interesting topics we wouldn’t even be aware of without your marvelous work! It’s much appreciated.
@Linda: it compresses the neck arteries and slightly increases the brain blood volume in order to prevent concussion injuries?
Seems to me all our arteries are near always constricted (compression constricts them too) and we have increased cerebral fluid pressure pointing to us having “more then enough liquid in the brain”. So maybe we are “naturals” in pulling of this trick already and it helps to protect our brain ?against concussion? or some similar damage?
Thanks DeJurgen – it’s amazing how many sides to the story there are. Thanks as always for your thought provoking comments as well. 🙂
Linda,
idk,
but imo might a q collar increase clots for people with sluggish blood and/or for those who bruise easily?
very creative thinking on your part and hopefully someone with actual knowledge to give you a good answer signs on — would be cool if your idea would help even for an hour
oops, had missed dejurgen had already replied to you,
my apologies
I am team ME.
I react to every weather change. Barometric pressure reaction.
I once said to relatives, what I never told anybody, because I considered it to be unbelievable, that I can experience crisis before first snowfall.
My uncle answered: me too.
He suffered from multiple sclerosis for fifty years. He was no blood relative of mine.
I need about two days to adapt to a weather change. I am improving (slowly over 5 years) and this gets milder as well.
I think the baroceptors are indeed the root.
Yes! And Spring is always pure torture; for some reason, when the weather is on a slow warming trend, that is the absolute worst for me.
Please, anyone and everyone, there must be some research out there that my neurologist hasn’t had the chance to see. He tells me that “weather change headaches” are a well-known phenomenon but that no one knows the *precise* reason (changing barometric pressure is hardly a precise explanation).
This article is really interesting. Do people know more than we’ve seen at this site yet?
Thanks so so much, Cort, for bringing up this subject. I’m in a great deal of pain this week due to the pretty warm weather. I admire it but find it very hard to tolerate. LIke hairytoadlily, it takes me time to adjust to the temp change, but when it keeps going up and down, as it does during season changes, it is pure torture.
I have been thinking about this before, and it’s not easy to get a grasp of it.
I think there is more involved then but baroreceptors. Many chemicals, especially in the brain, are pre-made and stored in what are called vesicles https://en.wikipedia.org/wiki/Vesicle_(biology_and_chemistry). Certain immune cells like mast cells tend to pre-produce many different types of chemicals and store them in vesciles too.
Vesicles can be sort of seen as round (spherical) compartments with concentrated chemicals like seratonin, histamine, glutamate,… Some of those are very important neurotransmitters essential in and determing brain behavior as well as nerve communication.
When activated, cells can dump such an entire vesicle or “package” in a single go. That happens in a process called excytosis https://en.wikipedia.org/wiki/Exocytosis.
Pressure changes can *IF* I understand it create such release of an entire pack of chemicals or an entire vesicle at once. What’s more, *IF* I understand it well one of the “usual” processes to release a vesicle is trough a chain of first glutamate triggering and then calcium triggering, where an influx of calcium increases the (osmotic) pressure within the cell driving one or more vesicles outside the cell. Now an increase in pressure might be able to do something similar I guess.
The opposite, a decrease in pressure might make the release of vesicles (or important chemicals needed in immune and brain and nerve and… functionning) extra hard. Then either the cells could IMO need a lot stronger pushing (energy expensive calcium signalling / influx) or they might need to produce quite a bit more vesicles filled with the desired chemicals before they can release some of them with the same effort as before. So a pressure drop would in that idea IMO present as a shortage of many key chemicals inside the cells. Their amount would not be suddenly decreased, but the lower pressure would require more of them to be pressent in order to be able to release them easy enough. That new equilibrium would require time, effort and energy before it could be reached. Hence: it would take time to adapt and before the body is fully operational again.
i prefer the air pressure to be higher instead of low
i wonder if “long-xxx-ers”,
whatever all illnesses the triple x may be, occupy both ends of the spectrum?
if some “long-X-ers” do better when barometric pressure is very low, and others when air pressure is very high?
That is really interesting. Thank you!
Same here. When CFS sufferers talked about sensitivity to weather it was alway considered a function of temperature but I know my body is reacting to the change in the weather i.e barometric pressure. It does sound crazy but after 20 years I have learned to draw a few of my own conclusion even if they don’t fit the reductionist dogma of many doctors
A yes from me too! Everyone loves Spring in Minnesota, right? Not this girl. It is the hardest season change by far. I have FM, RA, ME/CFS, POTS… no need to bore you. But this IS the most miserable time.
Sunie, that is a good question. Until approx. last year I felt better during low barometric pressure. This year is different and the pattern is reversed. I suspect it is because the vesicles, and their various substances (whether available, or in short supply), have had a change of how they respond to barometric changes. Something – a catalyst I guess – that triggered vesicle responses in the past has become either much less available or much more available.
On a related note, it’s become clear that _changeable_ weather plays havoc on my pain, sleep, fatigue and more. I believe this general affect of changeable weather is way underreported.
Also, related to these issues are the various (established? …easy to find online) theories as to why people’s arthritic knees hurt more during wet weather! Boatloads of theories & material about knee pain, fluids, baro. pressure & weather abound. So… are there any similarities between those knee-pain theories and and our FM/ME experiences??
I have massive weather sensitivity, storms, snow, rain, weather changing, fog, lightening, temperature changes, sun and heat all cause me to have pain in my head and neck, and to feel massively sick. Since the weather is always changing my symptoms are chronically activated. I also have body temp issues, sweating skin, cold hands and nose, feeling like I’m going to pass out, it’s a nightmare. I had a new neurology consult and asked them about autonomic testing bc where I go it says neuro has to refer you and he acted like I was completely crazy for suggesting this testing. No one knows anything and even google has no clue why the weather makes me suffer like this
Ughh. One silver lining hopefully from long COVID as time goes on – a better understanding of dysautonomia. Lots of doctors know next to nothing about it. Good luck!
Thank you Cort, once again for another excellent article — and very well written. How about this question: has anyone found evidence of inflammation among the baroreceptors, or among the neurological pathways that should comply with the baroreceptors signals?
This could be similar to the confirmed findings of inflammation in the brain, of those of us who have FM/ME. It’s extremely likely that inflammation is disturbing the response processes that dejurgen described, above. If I were a betting woman I’d bet this will be confirmed soon!
I think hot temperature from 80-100 makes fibromyalgia worse then cold weather
Only the abstract is freely available, the rest is hidden behind a paywall. So I have to do with the abstract.
“Systolic blood pressure (SBP), interbeat interval (IBI), stroke volume (SV), pre‐ejection period (PEP), and total peripheral resistance (TPR) were continuously recorded in 40 fibromyalgia patients and 30 healthy individuals during a cold pressor test and a mental arithmetic task.”
“Baroreflex sensitivity (BRS) was represented by the slope of the regression line between values in the sequences; baroreflex effectiveness (BEI) was indexed by the proportion of progressive SBP changes that elicited reflex responses.”
Issie and I are working on ideas why things like primairily HRV but secondary also SBP, IBI, SV and TPR would be limited in regulation range in ME/FM/…
If we would be even partly right about the idea that those have limited regulation range left, then an additional stressor would be able to do few to further push these parameters into stress levels.
To make things a bit more easy to follow: if veins are already very constricted, then standing up can do very little to increase SBP (in order to bring more blood to the brain) by trying to even further constrict the blood vessels (that don’t lead blood to the head, as constricting all the others should direct more blood to the head).
It’s like driving a stick gear driven car in second gear on the highway and being surprised you can’t get the car accelerated much more when you push even harder on the gas pedal if you are stressed by the many other drivers using their horn. Your stress sensor and part of the regulation works (you hear the horns, get stressed and push the gas even further) but your gas pedal is already stuck near its end position so it won’t be able to accelerate much or in other words to respond much to the stress signal.
There seems some but very limited reserves less in (up)regulating our cardiovascular system. When that happens, stepping harder on the stress pedal and it not resulting in boosting how hard the cardiovascular system works does not need to mean that the stress receptors are blunted. I actually wouldn’t be surprised they worked pretty well.
We are known to have easy sensory overload after all, so why not the barometric stress sensors going into overdrive either? Compare it with us having frequent strong surges in stress hormones like nor-adrenaline (fight or flight) and us still being barely able to think clear or lift our own limbs.
Thanks for your dogged determination
What a great analogy – “your gas pedal is already stuck near its end position so it won’t be able to accelerate much or in other words to respond much to the stress signal.”
I imagine that researchers are thinking just that. Certainly there is evidence of brainstem problems – and since the brainstem is apparently a key conduit for signals from the baroreceptors – problems there could conceivably explain much. There is a great deal of evidence of disrupted neural pathways in those circuits in FM – plus the emerging evidence of widespread neuroinflammation in FM and ME/CFS.
This is so disheartening. Every post Cort comes up with is part if the disease. Every thing tallies with my experience.
How can such a problematic many sided illness ever be cured?
How are we supposed to not be difficult in our interpersonal relationships when we have all this going on.
Sorry for the shout out loud despair but what a downer
:)/ It is amazing how many different pieces there are to these diseases. I would say, though, shouldn’t we expect something system-wide with lots of interlocking pieces given how functionally disabling ME/CFS can be? It’s more functionally disabling than heart disease.
I do think, though, that some fairly simple but broad processes could explain it. How about an autoimmune or inflammatory attack on the autonomic nervous system? Or the widespread brain inflammation Younger has found? Or both? The immune system can wreak havoc on everything. Look at lupus – it can cause virtually every symptom imaginable.
I think the findings will get more and more complex and then at some point the dots will connect and it will get very simple. 🙂
I like your confidence.
You’re right. It was a bad couple of days . Those ones where you just surrender hope.
Back on the hope train now.
One thing that I’d love science to analyse is the biology of habituating to drugs.
What is that process? Why does it happen and can we stop it from happening.
Things that really used to help me no longer do and I’d love for someone to find that mechanism and stop habituation kicking in
Never loose hope. I often compare ME to a tipped over pond, or a gordic knot. A tipped over pond will never get back to a balanced system by applying only one measurement. A lot of different fixes are necessary to enable the system to heal itself. So we try to find loose ends of the gordic knot and start untangling. Every positive change we can add to the system, like better sleep, a cured leaky gut, a bettered lack of hormones or substances, a tamed histamine overflow and so on, can cause a cascade of positive changes within the system. That’s the way we heal. Not with one drug. And last but not least, everything we can do to calm and strengthen our autonomous nervous system helps us. Answers are not in pharmacy, but in system theory, netted thinking and in an ecological understanding of our body. Unfortunately that’s what most doctors lack.
I find it very interesting how much our diseases correlate with MS, at least in terms of symptoms. My boyfriend has severe, progressive MS and we understand each other so very well, we’ve never had to worry that one of us is “just complaining,” that our pain and fatigue are real and are to be respected. But we share the weird mysteries of two people and two situations. As long as we laugh our heads off and listen to great music every day, we’re a happy pair.
Keep listening to great music and laughing! I imagine that Ian Lipkin was thinking of MS when he said it will take years to understand the full effects of the coronanvirus. We know that EBV can trigger both MS and ME/CFS and many of the symptoms are similar. I think we’re going to learn a lot about how infections trigger all sorts of diseases. 🙂
These comments are raising some red flags for me. I am planning to sell my house in the sunny New Mexico mountains at 7000 feet and moving to the cold flat gray tundra of Michigan. I was already concerned about this being a bad idea because I lose all motivation in that gray cold weather that Michigan has for weeks on end during 6 months of the year. Now Im wondering if my pain and symptoms and overall health will worsen too by making this move. Any opinions on this ? And what drugs might help me ? I have Lyme, fibromyalgia, pots and maybe leaky heart valves. I have read about LDN and LDA and am trying to find a doc who will prescribe the LDN. My plan is to try it for 6 months and then add LDA and see if those drugs help me. Any opinions on that ? I love healthrising !!! I just found this site in the last year. I have been suffering and haven’t worked for 30 years. No help for these issues from the western medical industrial complex !!! This is a great site and I have learned so much !!! Thanks for the info !!!
Susan
Can you try out the climate in an vacation?
Hello Susan, Cort, all,
Is it OK to mention the name of a doctor or practitioner?
I am slowly increasing my dose of LDN, starting at 1.5, which you mentioned you’re interested in, Susan. I’m told to go slow, and allow more than a couple of months to get up to an ideal dose of LDN.
I’m in the care of NP Beth Brown (also DNP) @ Brookhaven Health and Wellness Center and doing better.
She does telemedicine. She talked me into taking LDN, which I’d heard of but I’d forgotten all about. I’ve gotta say I’m glad to get the chance to have LDN, and my NP says most of her fibro patients do well on it.
Susan, I am from Toledo and have lived in California for 35 years. When we go to Ohio, I feel better. Heat and fires are very difficult here. We are moving back in about six months.
Susan, IMO I don’t think your pain and other symptoms will worsen in MI. I’ve lived in both FL and MN and as much as winter is no fun anymore, I have less pain in the cold months. I have fibro, me/cfs, rheum arth, etc. Good luck!
There is a list of US cities and their proportion of days with notable barometric pressure swings. I’m not sure what their threshold is, but it’s worth anyone clicking around to explore places they’ve lived or are interested in living in. I’ve lived in cities whose indexes are 0.1, 0.1, and 0.15. I now live in a city whose index is 0.3, and it does make a VERY significant difference in my state of health. In fact, my entire family who live here, teenagers included, go down for the count when the wind rises. So I’d tread very carefully when choosing a new place to live.
Here’s the link: https://securevideo.com/2014/09/23/u-s-cities-barometric-pressure-variation-full-list/
Also, I think people differ in how they respond to weather patterns. My fibro hates the cold. HATES it. I’d give good money to be able to move back to sunny, humid, hot Florida. 🙂 But lots and lots of people tolerate the cold better than the warmth.
My sister hurts when the pressure is high. I hurt when it’s low. It’s all very personal.
I’d try to grab an Airbnb for a month or more before committing to any new place.
Susan, I grew up in Michigan, moved to Florida at age 21 and lived there for 36 years. I had been active year-round outside in Michigan and in Florida, but I had pain, fatigue and brain fog that never went away after the birth of my daughter at age 29. I was finally diagnosed with FM at age 37. So in 2013 at age 58 I moved back to Michigan, and have been totally miserable every season here since EXCEPT during stable summer days, sunny or rainy. My pain and fatigue are pretty tolerable between 60 and 80 degrees with low humidity. Anything lower or higher, and I am cold, cramped, in pain and with fatigue and completely miserable. All year long, I can feel storms coming when they are about 150-200 miles from me. I haven’t found a doctor yet who will help me with the pain. My primary care doctor has continued me on duloxetine (Cymbalta) which was started about 12 years ago. I am so fatigued and brain-fogged, I have trouble researching and calling to find a doctor who will help but not put me on opioids, and who accepts my insurance. I moved back to Michigan for family reasons, but it has been so very difficult to continue living here. I am considering going South for next winter to see if that helps. I’ve wondered if a warmer state with lower humidity than Florida might make a difference, but as I get older, it gets harder to think and plan a big move again. I just found out about this site and I’m looking forward to exploring and learning more.
Good luck Kathy!
It sounds very much like my POTS and chiari malformation
Interestingly when my MAST cell was aggressively treated my POTS symptoms got better
This is an interesting ongoing study which , at least, I think could have some overlap into CFS etc. https://www.genengnews.com/news/natural-drug-approved-for-white-blood-cell-recovery-can-be-repurposed-to-improve-cognition-in-alzheimers-patients/
You people are all so smart. I can’t relate very well, except agree with the barometric pressure