Anxiety type symptoms are common in chronic fatigue syndrome (ME/CFS), fibromyalgia, Gulf War Ilness (GWI), and postural orthostatic tachycardia syndrome (POTS). Dr. Baraniuk, an ME/CFS and GWI researcher, has long thought that researchers missed the boat by focusing on depression in ME/CFS; anxiety, he believes is far more prevalent.
That certainly fits my experience. Trouble concentrating, feeling tense or jumpy, anticipating the worst, irritability, restlessness, feeling like your mind’s gone blank, nausea, muscular tension, dizziness, restlessness, fatigue and problems in concentration, headache, abdominal pain, shortness of breath, sweating and frequent urination can all be found in anxiety, ME/CFS and fibromyalgia.
The “anxiety” in POTS, ME/CFS and FM: is it primarily emotional or physical?
The diseases are different. Flu-like symptoms are more common in ME/CFS and pain is much more intense in FM. Post-exertional malaise – a key symptom in ME/CFS – is never mentioned in connection with anxiety and is apparently not present. The crippling feelings of of dread and fear often present in anxiety are rarely present in ME/CFS; many studies indicate that emotional issues contribute little to the functional problems in ME/CFS while physical issues dominate.
Still a common core of symptoms – feeling tense, trouble concentrating, muscle tension, dizziness, abdominal pain, shortness of breath, etc. – are found in ME/CFS, FM and anxiety. It’s as if the more extreme emotional symptoms have been stripped away leaving a body and mind on edge. Emotional issues are often present, but at a “sub-clinical” level. They’re not enough to trigger a diagnosis of anxiety but are enough to be aggravating. Plus, similar problems of catastrophizing and hypervigilance are fairly common.
I recently experienced an ebbing of many of these symptoms – the muscular tension, the trouble concentrating, the restlessness, the chronic pain, the difficulty taking deep breaths- while using a device that stimulates the vagus nerve. That made me wonder if autonomic nervous system problems could be behind many of these symptoms.
Given the continuing emphasis on behavioral approaches to ME/CFS and FM in some countries it’s an important question. A recent study from Belgium reported that 45% of ME/CFS patients had a mood disorder. A 2013 UK study stated that symptom focusing and beliefs about damage were particularly prevalent in ME/CFS patients with anxiety.
The Study
As it turned out, a recent study addressed this issue in POTS and two other autonomic disorders (vasovagal syncope, hypherhidrosis). It noted the overlap between POTS and anxiety extends both ways; POTS patients often experience anxiety issues at a subclinical level, while people with anxiety often experience POTS symptoms (dizziness, tachycardia, sweating), also at a subclinical level. (Anxiety, interestingly, is associated with a greater risk of fainting while doing a tilt table test).
They assessed the role of the autonomic nervous system in producing anxiety like states by the participants interoceptive awareness as they did exercise and stress tests. They proposed that their enhanced awareness of their heartbeat and other symptoms was making them more anxious. Even in healthy people a greater awareness of one’s heartbeat is associated with increased anxiety.
Plus, they proposed that the autonomic hypervigilance present in POTS and the array of symptoms it produces was necessarily anxiety-provoking. The anxiety in POTS was not due, they felt, to neurosis or trauma as in anxiety, but to a disconnect in the brain between the symptoms an environment should evoke and the cascade of symptoms often present in POTS.
The genesis and presentation of anxiety in disorders of autonomic overexcitation☆ Andrew P Owens a,b, ⁎, David A Low c , Valeria Iodice a,b , Hugo D Critchley d,e,f , Christopher J Mathias g,h: Owens, A.P., et al. Auton. Neurosci. (2016), http://dx.doi.org/10.1016/j.autneu.2016.10.004
The authors hypothesized that the anxiety type symptoms POTS patients experience were due to an over-awareness of their physical symptoms (i.e. an interoceptive problem). This didn’t suggest that people with POTS focused more on their symptoms but that their symptoms were so present that they were difficult to ignore.
The Results
In a surprise, though, interoceptive awareness of their heartbeats was actually reduced in the POTS patients relative to the healthy controls. Despite the fact that POTS patients did display somatic hypervigilance (i.e. they were very aware of their symptoms) and autonomic hyperactivity, they were less effective at tracking their heartbeats than the healthy controls. Not only that, but under the stress of the exercise and stressor tests, their ability to accurately track their heartbeats declined further.
This was a surprise. The authors had hypothesized that the autonomic nervous system arousal produced by the exercise and stress tests would make the POTS patients more attuned to their bodies, but instead the opposite happened. The POTS patients were more aware of their bodies but it was as if the more aware they became, the more confused they became as well.
An under-active insula may be responsible for some of the anxiety-like symptoms seen in POTS.
What was happening? The insula in the brain regulates autonomic nervous system functioning as well as interoception (awareness of one’s body state) and pain. In POTS patients, though, the left side of the insula appears to be smaller than usual. The authors suggested that the battered left side of the insula resulted in the right side of the insula – which is associated with anxiety – to take up the slack.
More importantly, though, they suggested the insula in POTS (and other autonomic nervous system diseases) was under rather than over-active. The insula creates an internal map of the body by interpreting sensory signals. In order to do that it compares expected vs experienced internal body states.
The authors essentially believe the brain expects one thing, and gets another in POTS. It’s the confusion between the expected sensory state and the sensory flood POTS patients experience that causes the brain to create anxious feelings. The anxiety in POTS is driven, therefore, not by emotions as in anxiety, but because the insula, which regulates both autonomic nervous system functioning and sensory processing, is struggling.
As the brain struggles to make sense of its situation, the ability to track one’s heart beat becomes more difficult – not less. POTS patients brains, then, are not tracking their symptoms more carefully; they’re simply getting overwhelmed by them.
Plus, the cognitive demands placed on the brain to make sense of the situation makes paying attention to other events – walking, talking, reading, listening – more difficult. One study suggested that chronic fatigue syndrome patients, for instance, can either walk or think but don’t do both at the same time easily. When asked to do a mental task during walking, many ME/CFS patients invariably looked down at their feet to determine where to place them.
Other Ways to Produce Anxiety-Like States
Autonomic nervous system problems and anxiety were clearly linked in a recent fibromyalgia study which found a strong correlation between reduced heart rate variability and fibromyalgia.
Other factors could be producing the anxiety-like symptoms in ME/CFS. Increased brain lactate (which is present in ME/CFS) is associated with panic-like symptoms in rats. Over or under activation of the prefrontal cortex – an area of the brain implicated in both ME/CFS and FM – is associated with anxiety in laboratory animals.
Tryptophan depletion (read serotonin depletion) has been associated with autonomic nervous system problems and anxiety in healthy people as well, (Mady Hornig is hot on the trail of that in ME/CFS). Aberrant autonomic nervous system functioning has been associated with the development of anxiety in autism spectrum disorder. (Dr. Naviaux believes autism and ME/CFS are related.)
Dr. Bell’s story of Maggie, an ME/CFS patient diagnosed with panic disorder, vividly demonstrates how easily anxiety can be misdiagnosed. Maggie was exhausted, had cognitive problems, night sweats, swollen lymph nodes, sore throats and headaches and had trouble standing. Instead of panic disorder, though, Maggie had extremely low blood volume which lead her body to pump out epinephrine (adrenaline) in an attempt to get the blood to her brain when she stood. That adrenaline was producing her “anxiety”. Maggie essentially had a blood flow disorder; when Dr. Bell treated her for that and some other orthostatic issues her “anxiety” disappeared.
See “When Panic Isn’t: Dr. Bell on Maggie’s ME/CFS and Fibromyalgia Story
Anxiety, then, is clearly not always emotional in origin. In diseases with autonomic nervous system issues like POTS (and probably ME/CFS and FM) problems with the autonomic nervous system, sensory integration, blood flow or blood volume can produce anxious or even panic-like states.
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Nice write up Cort. Sorry you are having what I call the “hebbie jeebies”, if I’m having “one of those days” – this sums it up. I feel there is also a connection with mast cell dysfunction (MCAS). If I stay on top of that – the HyperPOTS symptoms are better too. Exercise can also cause a mast cell degranulation and all the “hebbie jebbie” symptoms can start. And strong emotion or stress can provoke an “attack” too. It’s all different pieces of a very complex puzzle.
Hope you feel better soon!
Issie
Thanks Issie – I hope that you’re feeling better as well. It is a very complex puzzle isn’t it?
Thanks Cort.
Of course we’re all different but I’m completely resonating with a book called, The Last Best Cure by Donna Jackson Nakasawa. (It’s fantastic.) It is extremely well researched and falls exactly in line with my experience (much simplified below).
In 1994, I had a bout with Lyme Disease from which I never fully recovered. Mostly, I have been dealing with severe fatigue ever since.
I believe my system is screwed up owing to the fact that I lived every day of my childhood in serious, suppressed fear. This of course was followed by severe panic disorder in my 20s and 30s along with extreme depression. (In recent years I’ve been studying the HPA axis, fight or flight, hormonal cascades, brain chemistry, etc while dealing with my physical illness.)
Among the research discussed in Nakasawa’s book is the ACE study (Adverse Childhood Experiences), in which investigators assessed the health status of 17,000 HMO patients who came in for complete checkups. Many correlations were discovered between ACE scores and specific diseases. (e.g. Facing difficult circumstances in childhood increases your chances of having Chronic Fatigue Syndrome as an adult sixfold.) What’s interesting too is how illnesses often do not develop until decades later – in our 30s, 40s, 50s.
Nakasawa also discusses research findings (and she does so without getting too complicated) about how early childhood stresses rewire the circuitry of our brain, changing our epigenetics, and altering gene expression.
There’s so much more but I’m too tired (shocker) to write about it now.
Nakasawa’s inspiration for the book (and she is a science journalist) was her own Guillain Barre Syndrome in addition to other chronic autoimmune conditions she suffers from. After working with some of the best physicians on the planet, she decides to investigate alternative therapies (different forms of meditation, yoga, etc) for one year, while having her doctor document the results with lab work, etc.
I haven’t finished the book yet. But Nakasawa believes there is good reason to believe she can rewire her neural pathways using these methods.
While I do meditate and will continue do everything possible to rewire myself (lol), I have reservations. (I’ve been chasing last best cures for over 20 years). Still, it is so comforting to be validated with research that backs up what I’ve been suspecting for several years now.
It’s fascinating isn’t that the effects of something that happened decades earlier might take so long to show up. Of course things were changing all the time underneath but with Donna’s case and so many others all of a sudden a big switch occurred and she went from healthy to temporarily paralyzed over night. If they could figure out what that switch was that would really be something. It’s buried deep in there; somewhere in the immune system something dramatically changed..
I love Donna’s book. I understand that it certainly doesn’t apply to everyone or even most people but for those it does – what a revelation.
I’ve actually been doing a blog series on the book; for anyone who is interested – her year of mindfulness, meditation and yoga actually worked!
Oh. So sorry for the redundancy. (Don’t have the health to check back here a lot). Going to read that blog series now.
I’m constantly amazed at all the hard work you do for us Cort. Thank you, thank you,thank you.
OMG. I just realized how long that was. SORRY! :/
Kira, your mention of childhood suppressed fear reminds me of pyroluria. If you haven’t yet, you may want to investigate that. The treatment is mainly nutritional, so it’s relatively easy to trial at least. I learned about it on-line from Trudy Scott, CN. Best wishes.
And this would be in addition to whatever else is going on with Lyme, etc. fyi
I LOVE long comments, Kira :)…Thanks for such an informative comment!
I am not a doctor, and I have barely any technical knowledge of the body. But having been ill with CFS for 20 years and paying extreme attention to my body, along with incorporating anything I read that is relatable, I have a strong feeling that anxiety is circulation-based. Whether it be from a direct heart problem, or something less obvious, like these multi-system mysterious disorders, where the cause might be the effect or the effect might be the cause.
I have had the same gut feeling for years.
SUPER interesting. Your work is amazing, Cort. What you put into helping this community of chronic ills is nothing short of something that should allow you to win a peace prize. Thank you!
I had been coming to some further conclusions about my FM, that I was going to discuss with you, Cort – and now this posting happens to be quite relevant.
I think there is a badly wrong hypothesis that has long been a default position in the medical profession, that the “over-active central nervous system” in FM means that patients pain is “exaggerated” and at least partly imaginary – “in the mind”. Nothing more than signals.
But as I have been improving, I have come to suspect that the reverse is true. The central nervous system is on unrelenting red alert precisely BECAUSE unrelentingly tense muscles are in very real pain, but the normal mechanisms that would be activated by pain signals, i.e. to relax the muscles, are dysfunctional. The patient actually becomes habituated and desensitized to the low or medium level pain coming from everywhere.
One massage therapist got me thinking about this a long time ago, when he commented that me and others with FM, had muscles all over that were almost like iron bars with the tension, and were hypersensitive to pressure from massage – yet we did not complain like a normal person with a single muscle that tight, due to an injury or something, would describe the resulting constant pain in that muscle. FM patients had all this muscle tension all over the place that they were only rating as “1 out of 10” or “2 out of ten” pain, when a normal person would rate it much higher. The FM patient would rate it 10 out of 10 the minute the therapist applied any pressure at all, though.
The overwhelmed brain then struggles to provide normal cognition. I can completely relate to this. For years I have been trying to focus on relaxing muscles, including that I train myself to breathe abdominally – but I have been unable to do anything else while focused on this. As soon as I start to go about normal life activities, everything goes back to tension and dysfunction.
But I believe that as my condition has improved under a multi-disciplinary protocol, I have slowly been gaining ground with relaxation and proper “at rest” defaults with more and more muscles. And I have been becoming aware of more and more individual muscles pain, that I need to pay attention to relaxing. My jaw and facial muscles, for example, are now really distracting me; but I know they must have been this sore all along, because they have been this tense all along.
The jaw’s default position is “tense”. The result of noticing the pain, is that I consciously try to relax it – and succeed. Then a few minutes later, occupied with other things, the pain alerts me that the jaw has gone tense again meanwhile. And I consciously relax it, and this goes on dozens of times a day.
I can also relate to the groundless anxiety attacks and even a chronic state of it for long periods of time – even months. This also has lessened very much with me, and it is now a case of infrequent and short attacks only.
I am strongly convinced that what those of us with FM and other conditions, are experiencing, is a “BODY FIRST” thing and our brain and nervous system dysfunction is an “effect”, not a “cause”. To reiterate what I have said on this forum, that I believe: I somehow contracted elevated levels of a toxic element, cadmium; I then suffered dehydration issues as my body tried to remove the toxin via urination and I was unable to retain fluid (which rushed through me as fast as I could drink it, even with electrolytes included); which was worsened rather than helped by my committal to physical activity (cycling); and my muscles, losing their myofascial lubricant property, formed stuck layers, bands and knots.
Being under chronic stress in my job and financial position at the time, also contributed, because I would have been “tense” a lot of the time. The under-lubricated muscles tended to become stuck in the tense position. Elevated calcium is also believed to be a factor inducing involuntary muscle tension – the calcium / magnesium imbalance comes about through a messed-up endocrine system. I also lost part of my thyroid gland to cancer during this time.
I believe that FM in my case was the result of a combination of factors, but very much a case of dysfunction in the body, feeding back to the mind, NOT things “in the mind” feeding forwards. I resent the stereotyping of this condition along these lines by a significant number of professionals. Goodness knows how much useful research focus has been foregone because of this “arrogance of ignorance”.
I totally agree that it is a “body first” thing. I have believed this for the last 20 years, ever since I found out about trigger points and how widespread they become. I realised then that the brain was only trying to wake us up to the fact that trigger points need to be manually removed. You can mentally relax a contracted muscle but trigger pointed muscles are contractured and cannot be mentally relaxed.
It’s given your notion that the muscles just cannot relax enough which I experientially fully agree with – that Naviaux believes that energy depletion results in unrelaxed muscles. It takes energy, apparently, to relax.
Hi Phillip, you said:
“…But I believe that as my condition has improved under a multi-disciplinary protocol…”
Would you mind describing your protocol? With the understanding that we’re all different, and knowing that what works for you might do nothing for me….I still enjoy hearing details of the success stories.
Thank you, Phil, for taking the effort (we understand) to explain all that so well. I completely agree with your thought process on this, as it fits my experience as well. I certainly hope there will be further investigation as to this “chicken-egg” etiology of FM. Well done!
You couldn’t be more right Philip. I too believe my FM originates from the muscles & fascia first.
I was a remedial massage therapist for years – then I got to a point where my muscle/fascia tightness, fatigue and pain couldn’t recover on my days off. I had to give it up.
Back then, I didn’t suffer from the neurological aspects as much as I do now like sensitivity to light, sound, smells and other stimuli. Nor did I have anxiety, morning nausea or problems switching off.
Muscle pain, stiffness and the overwhelming fatigue are my key battles. I can work around the hypersensitivity issues more easily.
Post exercise/activity, stress and weather changes (like storms) bring about the most grief for me. Falling off the healthy eating and wagon is another factor.
These days I am sensitive to medication that never bothered me before. Typical in many with FM. Side effects not worth it! Hence I don’t take anything for the pain.
Interesting the calcium effect – I have experienced more muscle tension, anxiety and twitching from overdoing dairy.
However, I have also given myself low blood pressure and fatigue overdoing magnesium. It’s a fine line. Magnesium in the morning sends me into further adrenal insufficiency.
Another observation to back up our theory – my muscles were abnormal WAY back when I did sport as a teenager. Physiotherapists noted multiple widespread tight bands, spasm, cross pulling, etc. This continued into my remedial massage career and then eventually developed into full blown FM.
Yes – high pain threshold here too (until the barometric pressure drops when I FEEL everything).
I too believe the muscle problem comes first. Long before the CNS acts up.
A final note…. re the discussion about anxiety & circulation/blood volume. Well, traditional Chinese medicine has always linked anxiety to the heart meridian and the blood. This is why post partum anxiety commonly happens after childbirth blood loss. Definitely interesting!
Sorry for any typos. On my iPhone with smashed screen 🙂
I really wonder how Dr. Rowe’s findings of problems with tendon elongation fit in here.
Kendall: Not sure if my experience could help you but in case it can: I switched to natural cleaning/laundry solutions and shed a lot of pain. I took 10,000IUs of Vitamin D(liquid AOR brand) with 200mcg Vitamin K2 (AOR brand)and 4-7 magnesium glycinate pills (Douglas Laboratories) for 4 months. After the IACFSME conference I learned about cytokines and histamines, and I now take antihistamines (Benadryl or Reactine) for migraines and a couple of magnesium glycinates for body pain whenever it pops up.
To Phillip Hayward: Exactly. I was told things by the more informed doctors years ago that we are more able to endure pain and tension than healthy people, not less. The other day I had a lumbar medial branch block and I was yelling at how much it hurt. My PM doc said that’s because I was having a Fibro flare (the worst I’ve had for a long time due to winter coming on in So. Florida). He said I was desensitized and that’s why it hurt me so much but wouldn’t hurt someone else. And watch that thyroid. I wanted to talk about that and I will be publishing an article on another site. I just went through a big deal with it and never knew I had an issue. It explains so much of what I’ve been thought for more than 25 years, I am astounded. But that’s another subject. Just keep your foods and supplements up and keep them clean and organic. I’d like to search here any articles and discussions on thyroid soon. Health Rising is a really great place. I remember when it started and it was one of the first websites I read religiously. Right now, having been very ill for some months, I haven’t read anyone’s sites. Keep talking. This is how we learn — from each other.
Thank you so much Cort for this article and analysis. It’s most interesting. This is something which I have suffered for a long time and thought it was yet another symptom of ME/CFS. I never had a problem with anxiety prior to becoming ill 14 years ago. My anxiety seems to become even worse at night. I’d like to learn more about this symptom and what help and treatment is available, if any, and what can my GP to do that may help me. Thanks
I had a similar experience; no “anxiety” or wiredness or whatever you want to call it until ME/CFS. The vagus nerve stimulating device is helping and stress reduction and deep breathing does help. You might want to check out the Donna Jackson Nakazawa blogs mentioned in another comment.
I have Ehlers-Danlos syndrome. I also have a sub-set of POTS; Hyperadrenergeric POTS where my body pumps out an excessive amount of epinephrine and also over corrects with norepinephrine. As I go through my day, I have a very labile heart rate and blood pressure–yet as far as I can tell, it has nothing to do with a state of anxiety. My body just does it when I am going about my daily routine. EDSers are frequently diagnosed with anxiety, but researchers in our court now seem to think that the problem is with faulty tissues interfering with proprioception, plus some of the other issues offered up in your article. So far, they don’t have it entirely figured out–but it is very common with us zebras.
Thanks, Cort, for all the work you do, for sharing what you learn and for sharing your own experiences. You are the most well connected person I know in the ME/CFS community, with friends and colleagues in high places! Lucky us!
This particular post is very interesting to me, and although I don’t understand everything about the involvement and significance of the ANS and PNS systems involvement, there are things here that resonate with my experiences of symptoms I would also call “anxiety-like”. I’ve tried to tell my doctor and therapists that what they are calling “classic anxiety” to me feels much too “physical”.
My symptoms of ME/CFS seem to cycle through the systems over time. Some symptoms are consistent, subside at times and new ones appear. The ” unique flavour of the month” this past year seems to be episodes of “anxiety-like” symptoms that last several weeks at a time and then subside to some degree, then recur. The worst is “edginess”, which is hard to describe, rather like how one might feel when one has an involuntary shiver, only the body seems to be in an constant state of anticipatory shiver. (I can’t believe I am writing this…). I lose my appetite, have constant “semi-nausea” and gut issues, feel edgy and tense, and very apprehensive, but it is a very physical feeling.
These “anxiety-like” symptoms started after a rare bout of very bad flu followed by the shock from a family member’s serious illness. One night I woke with strange chest pain, heart racing and trouble breathing. I thought I was having a heart attack or a panic attack. I was checked out at the ER with an EKG, then referred to the mental health walk-in clinic. There, I was told that I had “classic symptoms of anxiety” and given the usual advice on management of anxiety and a prescription for an antidepressant (which I did not take, as I have had terrible experiences with all antidepressants in the past).
I’ve had ME/CFS for over 20 years now, and I think my doctor and therapists (when I can see them) are short on sympathy for my complaints as there is nothing they can suggest, except “management”, so sites like this one give me welcome solace, information and the knowledge that there are others out there who suffer too, and that there is work being done to understand and treat this maddening illness.
Thanks for listening…
I’m just a layman but those symptoms really make me think of the autonomic nervous system. Your description of edginess mostly jives with mine.
once my stealth viruses left me and all nerves started acting up after which serotonin and some others started to flow I’m surprised we’re all still quite stable and not hiding under our beds instead of on top of them and typing very clever articles ;o)
Good question! 🙂
‘statement’ haha
but srsly it’s the nerves
where all the Dauer action is
I’ve been trying to explain my anxiety as something chemical in my brain and not real distress
My mental health worker didn’t understand- I said there is something organic about it
This article makes perfect sense to me and is exactly how I feel about the panic and anxiety that go with my cfs/me relapse x
Thank you
This article is such a gift to me. I have been feeling such guilt when my “anxiety” kicks in and makes me virtually unable to interact with people or make decisions. I can relate to almost every answer as well. I never associated this symptom with my me/cfs and fibro. And i fight with myself trying to figurel it out. This has really given me something to look into. Thank you Cort and all.
I’m glad Paula. We have more than enough to worry about without this kind of stress (lol).
Cort, I am curious to know which vagus nerve stimulation device you recently tried. I am also curious to know if anyone in this community has used the Fisher Wallace Device which is FDA cleared for mood disorders such as depression, insomnia, and pain. Over 2 years ago I was treated for treatment resistant (read drug resistant/paradoxical reactions to drugs) severe depressive episode with severe anxiety and agoraphobia lasting 2.5 years. I received a series of the latest low impulse, short exposure reformulated ECT, Electroconvulsive Therapy, and experienced a complete remission lasting about 1 year of not only the mood disorder but also FM, MECFS. Obviously ECT is reserved for those with the severest of depressive episodes with suicidality or those whose become catatonic and I am not making a case for its’ use under any other circumstance or with any other diagnosis. Just a curiousity I’ve been puzzling over these past few years.
I’m using the Nemos Cerbomed Device. It’s only available in Europe right now. Check out this blog for more on it and someone’s experiences with Fisher Wallace device on this post here.
I’m glad that you brought ECT therapy up. I don’t know much about ECT therapy except that it can be very helpful, but why not, I wonder, try these in the severely ill who are not responding to anything? If those devices can reset the brain – we know the brain must be very involved in ME/CFS and particularly in these individuals with their horrible sensitivities – why not give it a try? Lots of devices on the market now (rTMS devices come to mind) that effect the brain are being used for pain and other disorders.
Is your remission continuing?
My remission from depression and severe anxiety has not continued. Nor has my remission from ME/CFS or FM. In fact this year has been the worst in over 4 decades for me. Major surgery being one of the major stressors and having wrong anesthesia. Learned about correct anesthesia after the fact. I still have some cyclical depression and a degree of anxiety depending on sleep, stress, etc. I suspect any way we can increase neuronal pathways may help to some degree. Thanks for all the information.
I am a frequent poster on an Inspire EDS thread, and have recently asked if anybody there has experience with a Fisher-Wallace machine (being that it is sort of related to some vagus nerve stimulators). Those of us with Ehlers-Danlos also experience excessive fatigue, but since clinically it cannot be called CSF/ME/SEID because those are a Dx of exclusion, yet our symptoms perfectly fit their diagnostic criteria (and maybe even share the same underlying causes!).
At any rate, the feedback about the FW machine is that it is helpful, but nothing to ‘write home about.’ Of the few who use it, most have not used it for long enough period to make an accurate assessment.
It is interesting to note that the yogic ‘alternate nostril breathing’ has been speculated to affect vagus nerve functioning as wall- albeit very slowly.
And one can find instructions on how to modify a TENS machine for this purpose (but I wouldn’t try this at home)…
Still, it is so exciting that this wandering nerve could show promise for all of us!
l would give these devices quite a bit of time. I remember reading with the VNS that its benefits grew over time.
Nancy B. Thank you for your comments regarding the FW device. Always good to hear about the experiences of others. I have decided not to purchase it at this time. Slow, rhythmic, diaphramatic breathing for 20 minutes a day has also been shown to stimulate the vagus nerve. Self Hacked also has a list of 32 things that can stimulate the vagus nerve.
Hi Cort, may I ask if you are using a modified tens unit for your vagal stimulation
Thanks!!!!?
I’m using the Nemos Cerbomed Device. It’s only available in Europe right now. Check out this blog for more on it and my experiences with it here.
“Maggie had extremely low blood volume which lead her body to pump out epinephrine (adrenaline) in an attempt to get the blood to her brain when she stood. That adrenaline was producing her “anxiety”. ”
My “anxiety” looks VERY much of the adrenaline type too. It makes sense for many of us:
* Many of us have POTS or something related; adrenaline increases blood pressure.
* Many of us have low blood volume; adrenaline “cuts off” “non vital functions” such as digestion, skin, blatter… and redirect blood to brain ans muscles.
* Many of us have respiration difficulties; adrenaline is a good broncholidator (sets lungs open, makes us better breath).
* Mast cell disorder or problems are related/rumored in ME. Adrenaline is the worlds prime medicine against anaphylaxis (very strong allergic reaction) and anaphylaxis is very closly related to mast cells. Adrenaline suppresses that reaction very effectively.
More philosophical: near all ME psycho-social CBT “scientist” strongly focus on our anxiousness and continuous “fight-or-flight” response. At the same time they say we are sick because we somehow got a sudden fear of moving. But they kinda willfully forget the basics of their medical textbooks: fight-or-flight goes near 1-to-1 with high adrenaline levels. Now who on earth can we have a near continuous fight-or-flight aka adrenaline overload and sit down and do nothing because we fear movement? Let me propose an experiment: give both them and us controlled adrenaline increases in the bloodstream and see which test subjects freak out, which would be very tolerant to it and which could increase physical activity and mental focus at those times. I like to believe the outcome of this experiment would be self explanatory.
To me, it’s just the hormone that gives us temporary a huge boost in abilities and focus. Without it, we can do even far less (who of us can do anything with even remotely a level of effort that would have been considered normal when we were still healthy?). Unfortunately, it comes at a huge cost. One of them is that it is also the hormone that makes a frail old women believe that she can lift a car no questions asked if she can save her grandchild’s live. It does the same with us: it lets us overestimate our capabilities fivefold and suppress the early symptoms of doing far more than we could do on a day-to-day basis very effectively for a short time. That’s in my opinion how we get in a continuous cycle of overdo-PEM-crash time and again even if we’ve sworn we would never again overexert us so much again. Adrenaline just makes us blind to any signal of it till the biggest boost is over. Long term this can lead to severe adrenal exhaustion and the loss of this “function” I believe.
Summarized: this “anxiety” thing may well be a strong example of confusion between cause and effect due to the difficulties and cost of measuring adrenaline on a continuous basis, but one can think of experiments shedding light on that one. I agree that high long term adrenaline loads can cause stress and start a reinforcing circle, but breaking out of it may be more effective whilst looking further then fear and stress as the cause.
I’ve often questioned if what we consider a symptom is a compensatory response and very necessary. I too have HyperPOTS with high standing NE levels. I’ve found, in my years of dealing, trying to supress this response is worse than allowing it to do what it does. The tachycardia produced helps get blood and oxygen to vital organs (heart and brain). It is extremely uncomfortable, but is preferred over lack of those things.
Histamine response can also be a compensatory response, but when we are talking about near anaphylaxis or heart “attack” (Kounis Syndrome – mast cell attack towards heart), it has to be addressed. A lot of things I would try to blame on other things, finding out that keeping histamine levels in check – has been a big help. I’ve found diet to be a key factor along with eliminating toxic exposure as closely as possible.
There are so many different subsets. We can’t all be treated the same. I’ve found I’m much better vasodilating, despite having EDS (you’d think the opposite). It will be wonderful when all the subsets get sorted. Listen to your body….we are all so different.
Issie
Interesting, Issie! Thanks for the info. I’ve been thinking about “subsets” as well. If anyone had noticed I had ME when I was about 5yrs old, I would have been diagnosed as being triggered by the flu. If I was diagnosed at the height of my career and volunteerism, I would have been diagnosed with overwork. Since I was diagnosed recently, I’m ME with Multiple Chemical Sensitivities. Many things triggered flare-ups for me at different points in my life which I got over until it came to chemicals and peri-menopause. I wonder if different so-called subsets are simply different toxic loads (which can include viruses) which tipped the homeostasis at a certain vulnerable time. And it might be that all of us could be affected by the same combinations.
Forgot this one relating to the blog:
Adrenaline gives a strong boost to the senses. In emergencies enhanced senses are vital.
Normally, this is not a problem: the brain also gets a lot faster with an adrenaline rush. For us, it can only push the brain from brain-fog-slow to somewhat OK at best. This leaves us with a huge sensatory load and few brain capacity, an ideal situation for brain overload.
Even in healthy people a once upon a time adrenaline rush can cause tunnel vision (=inability to process signals?). If we have often high adrenaline, our already weakened brains get daily sensatory overloads that further weaken it starting another viscous circle: we need more temporary boost/adrenaline to deal with our brain/sensatory overload.
@Cort: had typo in email adress, so previous mail has invalid email adress.
I forgot to say this was a fantastic write up, thanks Cort.
Been following your blog for a while but haven’t commented much yet.
The information you present is always a gripping read. Thanks so much for putting it out there.
Nice way to start Kendall 🙂 🙂 :). Thanks for your nice words.
I have moderate ME/CFS, and I scored a 12 on that anxiety test. I think it’s reaching pretty far to try to link anxiety disorder and ME. It’s like linking panic disorder with heart disease, just because people who have panic attacks feel like they’re having a heart attack. It doesn’t make any logical sense.
The high prevalence of mood disorders in people with ME may due to nervous system inflammation, which has been linked to mood disorders – or it may be due to digestive issues and gastrointestinal flora imbalances, which can also cause mood disorder symptoms. In other words, it’s far more likely, based on the evidence, that these symptoms are just the result of ME and not the result of a traditional separate mood disorder, or some sort of relationship between mood disorders and ME.
If you can normalize the gut flora in someone who has mood symptoms due to gastrointestinal upset, the mood symptoms go away… obviously. So if you can treat the ME, maybe a lot of these cases of diagnosed mood disorders in ME patients would go away…
I so agree with you! Definitely the anxiety we experience is due to not having proper disease rehabilitation for ME and the psychiatric industry abuse which also suppresses biological information. It’s pretty rich that the psychiatric industry takes funds from gov’t to “treat” the anxiety they’re producing.
A quick reply for you Dona, I think you are on to something with the gut micro biome. I remember reading some studies about changing a person’s mood by altering their biome (and it seems as if it can even be altered in very specific ways depending on what was added or ‘deleted’)! It was speculated that treatment for some psychological disorders could be based on biome alteration… and I’m very sorry but I don’t have the link… (Nature Magazine?)
And there is the ‘American Gut’ which is a crowd sourced study on exactly what is in our populations biome. You send a sample, (plus donation) and they see what you have living in your intestines! ;-). They are hoping to amass a large amount of data with this ‘poop survey’… Interesting…
Great reporting, Cort, though none of this rings true for my FM. I scored a 4 on the anxiety test, has never been a problem for me. All physical symptoms…pain, tense and spasming muscles, insomnia. No early history of bad stuff. I’m afraid I’m in the central sensitization theory group, or subtype, maybe. Body therapies like advanced Barnes practitioner myofascial massage and diets have been a painful waste of time and money for me. Of course, meds and electronic gadgets trying to target the CNS haven’t worked (yet?!) either.
If I remember correctly (not a given!), a previous POTS study used an anxiety questionnaire which didn’t include physiological symptoms of anxiety (things like dizziness), focusing more on the thought content. I think POTS patients had lower anxiety than normal (or at least it wasn’t a problem).
I’ll have a look forthe reference.
Ah yes
“POTS patients scored significantly higher than a comparison group in a range of anxiety disorders by using anxiety questionnaires like “Beck Angst-Inventar” (BAI) and trait test of “State-Traits-Angstinventar” which include autonomic items. When questionnaires were used that exclude autonomic items (anxiety sensitivity index: ASI; Interaktions-Angst-Fragebogen: IAF) there was no difference.
CONCLUSION:
POTS patients do not exhibit signals of anxiety disorders more often than control groups, provided that questionnaires without autonomic items are used.”
Fortschr Neurol Psychiatr. 2012 Aug;80(8):458-62. doi: 10.1055/s-0031-1299106. Epub 2012 Jun 12.
[Anxiety in patients with postural tachycardia syndrome (POTS)].
[Article in German
Thank you for this, Cort! Also enjoyed the many interesting comments.
I’m a former life coach, but still, as new symptoms pop up and challenge the mainstream medical system, I’m finding online advice on mental toughness and “box breathing” by former Navy Seal Mark Divine (youtube) very helpful. Also this report on “Mind-Body Skills for Regulating the Autonomic Nervous System” by the Defence Centers of Excellence for Psychological Health. http://www.dcoe.mil/content/Navigation/Documents/Mind-Body%20Skills%20for%20Regulating%20the%20Autonomic%20Nervous%20System.pdf
I’ve increased my medical vocabulary so that I can communicate better with doctors and researchers. Getting a word wrong is not a big deal to a layperson but to a professional it’s very difficult to understand someone using the wrong words. For example, being prone to ototoxicity is not the same as being allergic to antibiotics. Being intolerant of or sensitive to medication is not the same as being allergic to medication. Pondering allergy with a GP will get us dismissed. Raising the possibility of ototoxicity or sensitivity may get a doctor to think before using toxic medication as a firstline treatment. Or may help them understand they should exercise patience while we search out a naturopath to treat our conditions first.
I think healthrising is the best overall website for CFS/ME for a number of reasons. Fyi, Verywell.com has recently posted some useful articles written up as health tips just as they do for other diseases: hallelujah! I’m hoping they continue. And I love that they use a medical word in this article that all CFS/ME sufferers should know: homeostasis. https://www.verywell.com/staying-warm-fibromyalgia-chronic-fatigue-syndrome-715593
Great post Cort. I know that my so-called ‘anxiety’ and daily headaches hangover symptoms are due to my dysautonomia and specifically my over-the-top adrenaline reactions. I am on a high dose of propoanolol daily and all of those symptoms are far far better.
My daughter was diagnosed with cfs/me and fibromyalgia 21 years ago.
She also suffers from a phobia which prevents her from being able to use any form of transport buses, trains and cars, unless I am driving the car.
Do you think it is much more difficult for people suffering from cfs/me to over-come a phobia and if so why and have you any helpful suggestions.
Her phobia has got much worse recently and is unable to make the 5 hour train journey to visit me. She worries that she might have one panic attack after another during the journey.
Ann,not sure if this may help your daughter, but if her hormones are off, she might find this article on peri-menopause/menopause helpful. https://health.clevelandclinic.org/2016/05/can-menopause-cause-your-anxiety-or-panic-attacks/ The article says panic attacks are not a normal part of menopause but that “some” women get them. I think we all know who those women are! Chaste Tree herbal pills from MediHerb will balance out hormones. There’s a naturopath here in Toronto, Canada who worked with an ME doctor for 7 years to develop natural alternatives to medications in the form of tinctures. She’s fabulous. I can’t tolerate most medicines. They’re synthetic, usually have unecessary dyes and fillers and add to the body’s toxic load.
Dear LY – I recently found this interesting post and wondered if you could share the name of the excellent Toronto naturopath you mentioned – thank you so much
Maybe foolish to ask but has she tried either medication or CBT, desensitization, or other psychological approaches? In my clinical experience, anxiety, and especially phobias, are very treatable disorders. Does CFS worsen the symptoms…good question, can’t answer that one, might search pubmed.
Hi Ann, for phobias, I have tried and seen ‘tapping’ work on a variety of people with these kind of issues, as my significant other got certified in EFT (Emotional Freedom Technique). It involves light tapping on various meridian lines of the body while repeating phrases that describe the emotions involved. (Sorry that is a very rudimentary description). Somehow it disrupts the body mind connection that was initially made by a traumatic experience.
I think you can find some videos on YouTube or by Googling it. And it is probably easy to find (or learn) how to try it on your daughter…
I’ve seen it work on others, and if you try it, I hope it might work for your daughter! Best wishes…
I scored 36 on the anxiety test. I’ve been trying to address why mine has been so off the charts for the past five years. Perimenopausal, vagus stuff, past family trauma, a family history of “nerves”, but for some reason low blood volume has been something that hasn’t clicked in as possibly being a big component.
I’ve began my first lot of glucose/salt yesterday. I drank a litre last night and it barely feels like it touched the sides. I’ve been feeling confused for years about whether or not I have POTS or OI or what. For some reason I find it all very confusing. But it’s starting to come clear now why it hurts so much to stand up (blood pooling in ankles. Compression stockings are a real self-esteem killer but man, they sure made my legs feel sexy on the inside. I am really surprised what a difference they made). And now here’s a link with anxiety and blood volume.
I’d do anything to get this anxiety under control. It’s made life so bad I’ve often lost all will to stay in it (and then natural optimism bounces back when I lay down and see a tree out my window and I feel joy inside, and man, does that skip from one extreme to the other make me feel like a total basketcase? Yes, yes it does.)
Thanks for this, Cort. I love it when something comes in at the right time and a light goes on.
Hi Sue,
Have you seen a gynocologist and a good naturopath who’s also a western herbalist? Sounds like your estrogen and progesterone need to be balanced out. I’m there! I’m not recommending anything, just sharing my treatment – Mediherb brand Chaste Tree pills, one a day in the morning. It takes about 3 months to balance out the hormones. I went to the gyno for the ultrasounds to check for fibroids, etc. and when the gyno gave the all clear on the scans and gave her options for treatment, I then went to the naturopath. I’ve cut out coffee completely. I also cut out processed foods especially sugary carbs like pasta, pizza, bread, rice, muffins, etc. Sugary carbs increase estrogen, which is what we don’t need right now. I drink a lot of water during the day if I can to help flush out toxins which are hard on the vagal nerve and the whole body. Good luck!
Hi Laura. Yes, I went down that road some years ago and regularly supplement with progesterone. I’m glad it is helping you!
I just stumbled upon your blog and am truly fascinated. I understand some,but not all of what is said. But I will tell you that I had a severe adverse reaction to cipro eye drops that were given to me by accident in November. I was not suppose to have it, it was posted in my medical records, but it was given to me. I also had a severe reaction to the same drug 20 years ago—-exactly why it was posted in my records. My life has been a living hell since the eye drops. I.e. Confusion,tense body,can’t walk right,anxiety, can’t carry out daily tasks,always on edge,can’t sleep.even as a lay person I know that my cns and my ans are out of balance. I wonder how many people who are suffering from fibromyalgia were exposed to flouriquinolone antibiotics at any time prior to their illness. The symptoms are frighteningly the same. I’m sure I have mitochondria disfunction plus most of the other symptoms you have mentioned. I was so healthy before the drug. Engaged in life, family and friends, thinking clearly, very socially active and happy. It took only a matter of days for all of that to end. Can you let me know where I might find help. I’ve been to many doctors, but most are clueless. Please let me know. Thanks so much. Sincerely.