Anyone else in physical discomfort 24/7?

[Violeta]

That does make sense.

You've probably been checked for hyperthyroid and anemia, right? I doubt that anyone could be septic for so many years.

 

[sb4]

@Violeta yeah, I've been checked, not recently but it would have shown ages ago.

 

[Dysfunkion]

I think the internal issues just cause blood flow and vaso-effects in general. I will sometimes depending on how my entire body is regulating itself get stuck in certain states and depending on what side the needle is more stuck on than I'll get more constriction or over dilation feeling problems. Currently it's stuck in the cold most of the time, high anxiety for no reason (though this can occur in the flushing in the face a lot, hot all the time vaso-over-dilation mode too), harder to sleep, goosebumps, and food moving slower mode. I feel what the blood pressure and heart is doing is last in line though, I don't have anything specifically going wrong with my heart. Everything that is going on around it just causes it to work in really strange ways sometimes. When I can actually feel my pulse though, that's when I know I really messed up as that one only occurs when I'm having an actual severe reaction to something which will always come with scary CNS symptoms and some kind of immune response. If I consume something and the reaction is almost instant upon swallowing then I just brace for days of impact and some residual dysregulation.

It's gotten really annoying since that psyllium husk reaction I just had to an absurdly tiny amount and it may have been immune mediated too. That night I had endless nasal drip with some sinus pain, bloating, sky high anxiety, racing pulse but only when I went to lie down, those horrible migraine like disgusting nightmares, and extreme coldness. I couldn't focus on anything, there was no comfort, eating any food wouldn't put a dent in it, and heat wouldn't warm me up. Absolute misery. Long story short that next day I felt like a hissy cat that someone dumped cold water on. There seems to be so some really messed up stuff going on in the gut and the branching constant effects of the dysbiosis just cycle into themselves while being extra prone to being altered by very small things. There is also an obvious viral component with me too, the neurological dysfunction came long before any severe gut issues and growing up I always was prone to getting cold sores and other random infections (usually they targeted my ears/vestibular system). I can't remember not being like this, I just got worse as I aged.

See that's the difficult thing with this overall condition, there's so much going wrong that you can't really target one thing without making something else even worse and it pushes you into a corner through limitation that your forced to confine yourself too or you'll get even sicker. Sometimes if a stick shift in neurlogical and blood flow regulation occurs in the hot or cold direction symptoms will trade places with each other. Some things will be better that weren't on the opposite side and other things will be worse that may have been better on the opposite end.

 

[Viala]

I have constant 24/7 cardiovascular discomfort generally from bounding pulse but other similar symptoms, like inability to relax. It never goes away, not when I lay down, nor when I sleep. It just varies in intensity based on factors like heat, exertion, etc.

Have you tried arginine?

 

[Violeta]

@Dysfunkion

https://www.drhomeo.com/common-cold/cold-sensitivity-and-homeopathy/

http://www.homeoint.org/books/boericmm/s/sil.htm

 

[Dysfunkion]

Have you tried arginine?

I have didn't do anything at all really, tried 500 and 1000 mg. Don't really want to spend the money to try again at the moment because if that did nothing then then I doubt it'll do anything now, I'm just gonna wait some days and see where this dumps me out.

 

[sb4]

Have you tried arginine?

I can't remember if I have specifically, but I do remember taking a nitric oxide bodybuilding supplement that a member on here had success with but I abandoned it after a few days. I can't remember why.

@Dysfunkion I agree with you in that the hearts not at fault, it's trying it's best to deal with some problem upstream in the vasculature or something. Probably a combination of a fried ANS, vascular issues, and cell problems. The issue is my heart has been on overdrive for 13 years straight day and night without rest from this bounding pulse. At this point it feels worn out.

Yeah the weather dictates the overall state my body is in but the overall outcome is the same. My heart needs to pump extra hard for some reason (to overcome vascular resistance?).

It's interesting that when you get a bounding pulse it's associated with CNS and immune issues. I'm thinking what if my ANS is just traumatized or something from the day I got ill all those years ago and it's stuck in a loop sending the rest of my body a "its not safe message".

I almost feel like ME patients bodies react to whatever's going wrong by sort of shutting down (PEM) by my body instead "overcomes" the PEM by just pumping blood extra hard around allowing me to do stuff where overwise I'd be laying in bed.

 

[Viala]

I can't remember if I have specifically, but I do remember taking a nitric oxide bodybuilding supplement that a member on here had success with but I abandoned it after a few days. I can't remember why.

Yeah that's probably how it should work, not sure if different types of supplements will have the same effect though. I haven't tried other types so can't say if it works the same.

 

[Viala]

I have didn't do anything at all really, tried 500 and 1000 mg. Don't really want to spend the money to try again at the moment because if that did nothing then then I doubt it'll do anything now, I'm just gonna wait some days and see where this dumps me out.

Reaction can change, but it takes time. I had a few supplements like this that I didn't tolerate or which did nothing, and then after a while they started working and made a difference. But that happened after I tried other things which must have fixed something.

 

[kushami]

@sb4, yes, as soon as I win the lottery I will be getting all the testing money can buy, and flying first class to America to get it. Or maybe I’ll go by private jet

The doctor/researcher who described my condition suspects it happens at the arteriole level because arterioles are the most important stage in the circulatory system for regulating blood flow into organs. It is to do with the size of the “pipes” (fluid dynamics?).

Article about them (not too technical) if you wish to read further:
https://my.clevelandclinic.org/health/body/23377-arterioles

I had never heard of them until recently.

As to getting diagnosed, it’s a long story. I read the medical literature, scoured forums, narrowed it down to orthostatic intolerance / autonomic dysfunction, tried a zillion treatments, narrowed it down further when most of them didn’t work, got some clues along the way, landed on OCHOS as the last remaining possibility, took the specific treatment for OCHOS, felt better, and consider myself diagnosed. Also made some discoveries about autoimmune stuff and have two other autoimmune conditions, so that added to probability. My useless specialist put OCHOS in my files and GP letters, and nobody knows he’s useless or that I did all the work, so it’s basically official now!

I’m gald the small dose of clonidine helped a bit. Hope that continues for you.

 

[sb4]

@kushami Great detective work. What treatment for OCHOS worked out for you?

Interesting about the arterioles causing 80% of peripheral resistance.
I think some condition in my body is requiring more blood flow and the way my body meets the demand is by releasing adrenaline and increasing peripheral resistance whilst also increasing cardiac output.

 

[kushami]

@sb4 , the standard treatment is a calcium-channel blocker. That worked for me until I got insomnia (pretty common side effect), so I halved that dose and added a half dose of an angiotensin receptor blocker. These are both standard blood pressure medications.

I do feel better but still have a ways to go, and am continuing to try out different classes of vasodilator. Unfortunately, when I take an effective dose of a single medication, some side effect always pops up. So I am still looking for the right combination.

 

[Dysfunkion]

Reaction can change, but it takes time. I had a few supplements like this that I didn't tolerate or which did nothing, and then after a while they started working and made a difference. But that happened after I tried other things which must have fixed something.

Yeah I have had things like this happen to, I could have due to some other something going on been insensitive to changes with it. I've had reactions change in just a week before, the most volatile to changes like that being anything supplemented that's a mediator in the krebs cycle. The most dramatic was citrulline. Went from shooting my physical energy and social ability through the roof for a day and then immediately after did the complete opposite and I never got anything else out of it but regressions since.

I can't remember if I have specifically, but I do remember taking a nitric oxide bodybuilding supplement that a member on here had success with but I abandoned it after a few days. I can't remember why.

@Dysfunkion I agree with you in that the hearts not at fault, it's trying it's best to deal with some problem upstream in the vasculature or something. Probably a combination of a fried ANS, vascular issues, and cell problems. The issue is my heart has been on overdrive for 13 years straight day and night without rest from this bounding pulse. At this point it feels worn out.

Yeah the weather dictates the overall state my body is in but the overall outcome is the same. My heart needs to pump extra hard for some reason (to overcome vascular resistance?).

It's interesting that when you get a bounding pulse it's associated with CNS and immune issues. I'm thinking what if my ANS is just traumatized or something from the day I got ill all those years ago and it's stuck in a loop sending the rest of my body a "its not safe message".

I almost feel like ME patients bodies react to whatever's going wrong by sort of shutting down (PEM) by my body instead "overcomes" the PEM by just pumping blood extra hard around allowing me to do stuff where overwise I'd be laying in bed.

From my recent regression like I just said in another post I highly suspect I have some major immune trigger that is triggering long term ANS loops my body gets stuck in or even paralyzed in through changes to my bodies voltage systems and adrenergic receptors in a nutshell. Of all the experimenting I've done over the past couple years all signs point towards that being on of the main features of my issues. The texture was exactly the same as lions mane and when I crashed from that it felt almost the same at a baseline but things got much worse. The common feature was a special can of fiber, in the case of lions mane it was beta glucans, in the case of this it was unique blend of a couple others I haven't encountered in anything else before.

I have PTSD and I notice my dafault neuropathways remain the same but my reaction to them in different states of health will change and depending on long term environment I could have shifts in how those neural networks react to things but though crashes have similarities to triggers they're independent to triggers in my case as much as I have trauma associated with my worst, I could imagine the shock of being thrown back into certain sensations can have immediate symptom shifts though, I don't totally rule it out and mine go back as far as early childhood. I can trace my strongest fight flight loop and my reaction to it all the way back there and to this day it's still the strongest and in many ways as I got older that pathway has only gotten more life ruining. I call it "the circuit" I can feel it's influence through everything I do and every interaction with another person I have independent of how I'm actually feeling. Reactions to things I try on the health front with ME/CFS are whole different animals. Not throwing your view there under the bus but just fleshing out the mechanics of how it could be interacting with things there from someone on the inside of the condition with years of therapy and active trigger dissecting.

I was thinking about my worst recent reaction to psyllium like that, it seems like there was an immune reaction, the body reacted by going into a damage control mode which involved some sort of neural network paralysis by some mechanics, and it's very difficult to alter your way out of it which based on my experience needs to be micromanaged into a different feedback loop. The fact that the sudden situation can change how things in your body react to the same things you already been doing only makes it far more complex.

 

[sb4]

@Dysfunkion Yeah I appreciate your point of view and you could well be right, I'm just throwing things desperately at the wall at this point.

I don't have any real PTSD like memories, nor any real happy memories so I find these brain rewiring techniques difficult to relate to anyway.
It's not like I've never been happy, it's just I can't think of any memory of being truly happy, especially with the last 13yrs being ill.

Could you expand on how you think the immune system is messing with your neural networks and adrenaline?

 

[Dysfunkion]

@Dysfunkion Yeah I appreciate your point of view and you could well be right, I'm just throwing things desperately at the wall at this point.

I don't have any real PTSD like memories, nor any real happy memories so I find these brain rewiring techniques difficult to relate to anyway.
It's not like I've never been happy, it's just I can't think of any memory of being truly happy, especially with the last 13yrs being ill.

Could you expand on how you think the immune system is messing with your neural networks and adrenaline?

What I mean is for example I get exposed to mold and a certain set of immune mediators are released, all of these have varying effects on how my nervous system functions at a baseline. They may induce more stimulation or they may induce more depression , sometimes they just alter the wsy various parts of the brain communicate with eachother. When I say neural networks what I mean is your baseline trained response to things within your biological framework based on what is allowed to happen. You feel happy when this happens, you relate this sensory information with that through baseline connectivity you were born with plus experiences and feel something on your skin when this happens, ect-. All association based programming in general controlling what fires in response to what based in your environment and the hardware you were given to work with.

When these immune storms go off in response to immune triggers the biological effect of the mediators alters how the brain connects with itself and may cause erratic firing but it can't fire out of the context of these hardwired neural networks normally or at least it is extremely difficult for that to occur in any way that would cause an experience vastly different than one's normal relationship with the world and even so you'd still have your association networks between stimuli anyways to a fluctuating constant. This is why some people with PTSD benefit from novel psychedelic experiences for one example of something that forces one's brain to work in a completely different manner within memory association networks from all senses. New association anchors can be learned and integrated resulting in ways of experiencing the world they wouldn't have been able to access easily without that experience on the substance. So when the immune responses go off especially since considering the immune system is connected to the nervous system in many complex ways the person will still largely be operating in normal contextual experience of the world around them but now with extra immune interference in various ways so there may be an increased focus on this that causes that specific reaction and the response to that reaction may be exaggerated or muted based on the altered parameters from the immune mediator influence.

Here's where this gets interesting though say this immune response is persistent. Let's say this person is in an environment where they can't escape the thing causing the immune response that causes a specific neural output. This experience is also getting coded into the person's long term experience of reality and being mapped to the same association networks as anything else. So now this thing can have long term impact on the persons functioning even in the absence of the immune action because of the influence it had long term on the nervous system through the mediator action almost like a drug in itself as what was occuring while that was going wasn't just the immune reaction but the location it happened in, what the emotions of the person were, what they were consuming at the time, and cross referencing between these things by the brain to form a more complete association map that it uses to continually navigate the world around it and continually build on the neural networks already established.

Things get more complex when recently in my research I started looking into things called heterodimers that receptors and cytokines (I believe cytokines can only interface with other cytokines but not with receptors) can form amongst each other to create infinitely complex memory association based firing networks in the body. Serotonin receptors for example can even interface with receptors we primarily associate with the immune system like histamine receptors. These can form through all kinds of training in the body so as long as the receptors are firing together as in literally "what fires together, wires together". I stumbled across this when I was looking up information on receptor relationships in the context of opioid addiction trying to make sense of some things in my own situation and when I came across heterodimers and started seeing how complex these networks of them can get then I realized I stumbled upon a very complex answer to some very simple questions I had about my situation that I still can't really make sense of besides repeatedly trying things out and noticing varying repetitions in neurological firing patterns and rebounds.

So yes there can be a link between trauma and ME/CFS but the answer isn't something stupid like just go outside and talk to people a lot more about things that make you happy and you'll feel better. The immune and nervous system relationship is so hopelessly complex through heterodimer formations that every person mind as well be their own planet. Not everyone with PTSD that has profound physical manifestations has ME/CFS and the other way around. I guess that's what makes the psychological cause angle so effective for gaslighting people. Involvement is not cause.

 

[sb4]

@Dysfunkion Very interesting, thank you.

The bit about persistent immune activation mixing with everyday life resonated with me.

For me I speculate something like this could be occurring. Persistent infection or whatever is constantly lighting up certain nervous system pathways and as a result causing poor blood flow. As a response to this poor blood flow adrenaline is produced to allow me to do things. The adrenaline further prevents the persistent infection or whatever from clearing up. The adrenaline / poor blood flow response is constantly firing with the persistent infection response and they are now wired together in a loop.

 

[eucatatrophe]

As I understand CFS/ME, permanent discomfort/pain is something that is present in most of us.

It's not 24/7 because you are literally unconscious when you sleep so you don't feel anything, but as soon as I wake up I get back to this feeling of discomfort and mild pain in my joints, back etc.

Our brain adapts to that with time and tends to ignore some of those feelings for some time, but this discomfort/pain continues to constantly overload our nervous system in background which makes it kind of a vicious circle..

I don't buy this. I can tell in my dreams when I'm doing poorly blood volume wise because they'll get increasingly scattershot and anxious and I'll start being short of breath and lightheaded and weak/falling over in the dream.

Other symptoms appearing don't seem to mean much but for that I usually wake up tachycardia and near to syncope.

It's pretty horrifying

 

[Dysfunkion]

@Dysfunkion Very interesting, thank you.

The bit about persistent immune activation mixing with everyday life resonated with me.

For me I speculate something like this could be occurring. Persistent infection or whatever is constantly lighting up certain nervous system pathways and as a result causing poor blood flow. As a response to this poor blood flow adrenaline is produced to allow me to do things. The adrenaline further prevents the persistent infection or whatever from clearing up. The adrenaline / poor blood flow response is constantly firing with the persistent infection response and they are now wired together in a loop.

Yeah you get what I'm trying to explain in a nutshell that I hoped made enough sense as I was just speculating based on how my condition behaves and how my body/mind responds to things and the same things at different times. Like recently before the psyllium husk slip up cinnamon was giving me multiple random mental windows but now it's only keep my energy up higher still but the neuro excitation peaks have been cut again. I think what happened is what I explained about a programmed immune response got stuck in a firing loop and now I need to find out what can trigger it out of it but what can do that is a sometimes dangerous guessing game because I suspect people with this condition have so many of these programmed neuro-immune loop traps that what wouldn't do anything at all to a healthy person could send someone with this into another crash upon just getting the tiniest dose of said thing.

Though what I find interesting is I can experience high anxiety right now which implies somethings can be hyper excitable but I'm not getting the full adrenaline excitation response physically like that actual adrenaline rush feeling is not firing currently.

Edit - Oh you know what I just remembered too? I remember some months after I hit severe and was crawling my way back out and lost tolerance to methyl-b12 when I resumed it again I also in some ways neurologically was able to get that response back partially but it was incomplete (imagine like parts of the brain and nervous system turning back on fully but not all of it, best way I could describe it) and it didn't stick around. Not sure what stopped it around the time but something else I tried around that period had the same "peak cutting" effect and then it didn't do it again. Upon increasing the dose I got more physical energy but it didn't do the thing again which further backs up what I think is going on.