Is ME/CFS caused by biological stress and perpetuated by high catecholamines and low blood volume?

[Sushi]

I definitely get the slow heart rate. Your right, there is no mistaking that one.
Since having ME I am very surprised at what doctors don't know I don't understand how they don't even understand POTS. It's a major symptom for some to deal with in ME. It's only since coming here to PR that I have learnt the name of that symptom which I had severely.

This might sound ridiculous but I also found lying down and trying to bring about a shiver helped raise my blood pressure. I did this one time when I really thought my heart going to stop completely.

Do you know about the valsalva maneuver? It could help--temporarily. You can read about it here.

Sushi

 

[rosie26]

Do you know about the valsalva maneuver? It could help--temporarily. You can read about it here.

Sushi

Thanks Sushi, made a note of it. That will be a good one to remember too. These things can be enough to shift us out of a danger zone.

 

[Sushi]

Thanks Sushi, made a note of it. That will be a good one to remember too. These things can be enough to shift us out of a danger zone.

I even had an Urgent Care doc tell me to do it once.

Sushi

 

[leokitten]

Is it possible that activated sympathetic response may be a way of producing cortisol to dampen down inflammation in earlyish stage infection or autoimmunity? I have certainly had periods of high cortisol, but also of low. Further the diurnal aspect must be remembered - illness is exhausting. You might be fired up to produce cortisol against inflammation at one time of the day, but be unable to sustain production, with a diurnal boom and bust pattern for some months into illness and a declining pattern of lower and lower production as time goes on unless the cause of the inflammation is resolved. Catecholaminse might follow a similar boom and bust, then declining pattern.

Very well put, to me this sounds like a totally plausible explanation.

On psychological stress
Imo we must be careful not to dismiss psychological stress or be open again to accusation of mind body dualism and denigration of mental illness (unwarranted accusations of course). It is now believed that psychological stress can alter bone marrow production and promote inflammation, offering an insight into bio mechanisms but also implying that psychologuy is important in some inflammatory disease. This may please the shrinks and will not be news to e.g psoriasis sufferers, but the correct deduction would not be "see a psychotherapist or remain voluntarily ill" but "yes, stress can make us physically ill, so we will treat the physical illness for that very reason, and the stress too, as we might in e.g. psoriasis, diabeted,".

I agree completely, but after the blow back from people misreading my OP I was afraid to even mention the word "psychological". Chronic psychological stress does indeed also cause biological stress and a sustained stress response physically inside the body, and this over a long time will make people more susceptible to all kinds of problems and could indeed contribute to other underlying factors that would eventually cause ME/CFS.

 

[alex3619]

If shivering is from cold, then its not just about shivering. When we are cold the blood moves from the skin to the internal organs. That might help compensate for lower brain blood pressure. Which makes me wonder - does anyone find OI is clearly worse in summer. I never have, but then I was never looking for this. In summer, when we are hot, blood moves to the skin.

 

[rosie26]

@alex3619 I find this whole thing quite complex and need to study POTS and OI more. I can't really can't talk on these symptoms as much as I would like. But I have to be careful when taking a hot shower. I don't feel well and feel like I could faint or collapse. The cold air getting out helps me to recover.

 

[Martial]

Low blood brain flow is a big issue for me alongside brain inflammation of the meningeal region I believe, very severe stuff from Lyme, Sometimes I feel like I will end up passing away from a more acute flare of meningitis/encephalitis. I definitely notice intense shivering when I herxed sometimes using treatment, also intense feelings of burning, migraines with this really achy feeling in my brain, and the cognitive issues and mental stuff just go off the deep end at those times.. Don't seem to have it with the rest of the body, but in my own case the brain definitely has large impairments and the type of symptoms that come with reduced blood flow, and inflammation.

 

[Forbin]

FWIW, about a month after I came down with "classic" M.E. following a severe flu in the early 80's, my cortisol levels were tested twice in the same day, once at 6:00 AM and again at 10:00 PM. Despite being under a lot of stress due to the illness itself, my cortisol was in the high-normal range both times: 16.2 in the morning, 19.5 at night (normal range 5.0-22.0).

Unfortunately, I never had a test for catecholamines. Early in the illness, I did suspect that at least one symptom, a constant sense of "shakiness," might be caused by adrenalin, but no doctor ever went down that path.

I did notice a relatively low resting heart rate of around 50 for the first time only after I fell ill. My sleeping heart rate was in the low 40's. Also, early in the course of the illness, I was put on a beta blocker (Inderal) which lowered my resting pulse to (yikes!) 32. After complaining of cold extremities on waking, an attempt was made to decrease the dose. No matter how little Inderal I took, my heart rate dropped to 32 - and remained there until I stopped taking the beta blocker altogether.

In recent years, my blood pressure has tended to climb at night. When it does so, my heart rate invariably slows - often into the mid 40's. I thought the slow heart rate was perhaps increasing my BP, but my cardiologist says it's the reverse. The constricting blood vessels increase the blood pressure which slows the heart.

- - -​

One odd, possible precursor symptom I noticed in the months before onset was a new tendency to be racked by body-wide "shivers" in cold environments which had not bothered me before. I'm not sure if that really was connected to the later development of M.E., but it was very odd.

 

[Richie]

Leokitten
I agree that psychological stressors can cause ill health. ,
I also believe that carrying a physical illness where "you've peed you life up the wall mate" or "what kind of weirdo waster are you?" were basic messages for the first 14 years was one of the major psychological stresses of my life.
Many of us are in this boat, I think.
Many docs are kinder now but under our NICE guidleines remain woefully ignorant.

 

[leokitten]

I regard this as a possibility, but only a possibility at this point. Its something we should be thinking about though.

There is no question that some people are more vulnerable to some issues than others. Causes range from genetics, epigenetics, toxin exposure, diet, comorbidities, and indeed anything that induces alterations in function expressions of genes.

There are many possibilities as to why the cause has not been discovered. First, it might have been discovered, but we missed it. This is entirely plausible, just look at the 65 years we failed to realize CPET was a good test in ME, aside from the very few researchers who were working on it, and the small number of doctors who followed that research.

Second, it might be something we do not understand yet, or cannot measure. We cannot presume the science is complete enough to include every possible cause.

Third, there may be many different causes muddled together on the basis of a similar final syndrome. The evidence is strongly suggestive that ME is two diseases, not one, but this does not rule out one disease with two different disease expressions. Different disease expression groups are known in other diseases. (This is of course ignoring the heterogeneous hodge-podge of CFS diagnoses.)

Someone else somewhere on this forum wrote the analogy that, regarding it's cause, "ME/CFS is like cancer" and this rang true to me. That ME/CFS is a disease that does not have a single or a even a few causes that can be pinpointed, but rather is a culmination of a number of things that finally result in a tipping point which unleash a disastrous sequence of events.

Analogous to cancer and all the things that cause unwanted DNA mutations and damage my current belief is that you will never get anymore of a specific cause to ME/CFS than all the things that can cause biological/physiological stress and for each particular person the threshold or tipping point being X combination for Y length of time, etc.

Low blood volume on the other hand is a topic that has been inadequately explored, and for which the research is sparse. Its one of the things that has not appeared interesting enough to have research funded. Much of which is written is speculation. We know it exists, we know its common in us, but we do not understand it. I find this deplorable.

I totally agree, and the reason why is because measuring blood volume is not a straightforward lab test that can be done via major labs like Labcorp or Quest. The test for blood volume is a more complicated nuclear medicine test that requires special equipment, see http://www.ncbi.nlm.nih.gov/pubmed/23657140 and must be done at hospitals that have the equipment.

I think that a lot of chronic diseases and problems, not just ME/CFS, have symptoms that lead back to loss of blood volume. Also I think that doctors should very early on measure 24-hr urine catecholamines and metanephrines as chronic stress responses can lead to a number of problems.

 

[Ruthie24]

Re- Low blood volume. In the POTS/OI research community there has been research showing paradoxical levels of renin, angiotensin II and aldosterone that seem to be involved in the chronic low blood volume findings in us. What the cause of those abnormalities is is another question yet to be answered.

@leokitten -your onset sounds very similar to mine. Many of my friends told me when I first became ill that they figured my body just finally decided it had enough after all the years of being pushed like I'd been doing and ignoring those subtle (and sometimes not-so-subtle) symptoms that were already occurring. However it was surgery and post-op infection that seemed to be the "tipping point" that caused the full blown ME/CFS.

For those of us with EDS as well, I wonder if the high catecholamines are a life-long compensatory thing to help with circulation?

When I saw Dr. Kogelnik last week he was saying they are going to identify the various subclasses in this disease at the microscopic level. He said they are definitely seeing different "groups" within the patients that he's seeing at the microscopic level. Now they need to see if those differences hold up to large numbers of patients. That of course needs funding.

leokitten- do you have any contacts there in DC who can help with this funding problem? Know anybody who knows anybody in the area that reviews studies for this disease?

 

[Leopardtail]

Leokitten
I agree that psychological stressors can cause ill health. ,
I also believe that carrying a physical illness where "you've peed you life up the wall mate" or "what kind of weirdo waster are you?" were basic messages for the first 14 years was one of the major psychological stresses of my life.
Many of us are in this boat, I think.
Many docs are kinder now but under our NICE guidleines remain woefully ignorant.

not sure ignorant cuts it, 'negligent' would be nearer the mark

 

[Leopardtail]

Re- Low blood volume. In the POTS/OI research community there has been research showing paradoxical levels of renin, angiotensin II and aldosterone that seem to be involved in the chronic low blood volume findings in us. What the cause of those abnormalities is is another question yet to be answered.

@leokitten -your onset sounds very similar to mine. Many of my friends told me when I first became ill that they figured my body just finally decided it had enough after all the years of being pushed like I'd been doing and ignoring those subtle (and sometimes not-so-subtle) symptoms that were already occurring. However it was surgery and post-op infection that seemed to be the "tipping point" that caused the full blown ME/CFS.

For those of us with EDS as well, I wonder if the high catecholamines are a life-long compensatory thing to help with circulation?

When I saw Dr. Kogelnik last week he was saying they are going to identify the various subclasses in this disease at the microscopic level. He said they are definitely seeing different "groups" within the patients that he's seeing at the microscopic level. Now they need to see if those differences hold up to large numbers of patients. That of course needs funding.

leokitten- do you have any contacts there in DC who can help with this funding problem? Know anybody who knows anybody in the area that reviews studies for this disease?

If you have low blood volume the heart must beat harder or faster to maintain blood pressure and adrenalin serves that purpose if your adrenal glands are in good shape.

 

[Leopardtail]

Do CFS patients tend to have high catecholamines?

This varies greatly, some think they start high and become low much like Cortisol. For those suffering hypoglycaemia, they are certainly low.

 

[Leopardtail]

1. The fact that many of the symptoms of ME/CFS and that intracellular pathogens go on a rampage can be explained by chronic high levels of catecholamines and low blood volume.
   
2. In fact the low blood volume can be explained by the chronic high levels of catecholamines and stress response.

Your point 1 above is clear, please explain the science behind your point 2.

 

[Leopardtail]

I definitely get the slow heart rate. Your right, there is no mistaking that one.
Since having ME I am very surprised at what doctors don't know I don't understand how they don't even understand POTS. It's a major symptom for some to deal with in ME. It's only since coming here to PR that I have learnt the name of that symptom which I had severely.

This might sound ridiculous but I also found lying down and trying to bring about a shiver helped raise my blood pressure. I did this one time when I really thought my heart going to stop completely.

Shivering is caused by adrenalin, so that one makes sense

 

[Leopardtail]

I definitely get the slow heart rate. Your right, there is no mistaking that one.
Since having ME I am very surprised at what doctors don't know I don't understand how they don't even understand POTS. It's a major symptom for some to deal with in ME. It's only since coming here to PR that I have learnt the name of that symptom which I had severely.

This might sound ridiculous but I also found lying down and trying to bring about a shiver helped raise my blood pressure. I did this one time when I really thought my heart going to stop completely.

Rosie,

how recently were your Electrolytes checked (especially Sodium and Potassium)?

 

[Ruthie24]

If you have low blood volume the heart must beat harder or faster to maintain blood pressure and adrenalin serves that purpose if your adrenal glands are in good shape.

For those of us with EDS along with all this other stuff, (POTS/OI/ME/CFS), it seems a lot of us have had many symptoms of OI early in life. Maybe because of less collagen in the vessels making them less helpful in keeping blood flow moving back to the heart and therefore keeping stroke volume down and therefore keeping catecholamine levels up as a compensatory reaction?

I'm not quite sure what you mean by your statement above, other than the obvious. What I was trying to say was that after decades of the pattern I describe above, probably adrenal glands aren't particularly healthy, along with many other systems in the body being physically taxed and overburdened and thus, as Leokitten described, at a point where they might readily succumb to a pathological invader (virus, bacterial) that pushes them over the tipping point of being able to compensate.

 

[Gijs]

ME/CFS have chronic sympathetic nervous system dominance and dysfunction this is the central problem i agree.But we don't know for sure if this is due to compensatory reaction. I think the parasympathetic nervous system is defect due to inflamation (?) nervus vagus.

 

[rosie26]

Rosie,

how recently were your Electrolytes checked (especially Sodium and Potassium)?

Hi Leopardtail

Thanks for your feedback and confirming what I thought.

My Electrolyte tests have all come back within normal range. Everything seems to come back normal. I don't know how one can feel so ill and everything come back normal (Especially in the severe years). I am in my 12 year and at a more moderate level now. I really need to find out my AT and watch my heart rate and see what it is doing like others do here. And then experiment more with taking in more Electrolytes and fluids. I will try to see into all that this year and next. x