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PTSD as a cause for MECFS?

Messages
63
I have acute (intense) PTSD and several cases of more minor PTSD from what life can be like for an autistic who is sensitive and smart. I only recently got my diagnosis and it’s enlightening. Explains a lot about why I have trouble biting my tongue.

my autism doctor is autistic and has CFS like me. I started showing CFS symptoms in Feb. it’s not tied to Covid. The doctor told me there is a causal link between PTSD and CFS.

anyone here know much about this?

my fatigue doctor is convinced it’s from mold so I’m waiting on my mycotoxin test results. And there’s mold in my apt so it could be mold is a factor too.
 

geraldt52

Senior Member
Messages
599
PTSD is undoubtedly a neurological condition with its own spectrum of symptoms, some of which may be similar to CFS. CFS is a condition defined by an "outbreak" occurring at Incline Village near Lake Tahoe, sharing many characteristics with earlier "outbreaks" that appear to be the same, or very similar, condition. Any proposed "cause" of CFS that can't account for the outbreaks, can't possibly account for CFS. It would be quite a stretch to attribute any of these outbreaks to PTSD. I would think then that by definition, PTSD is not CFS and does not cause CFS.

As long as any condition that shares any characteristic with CFS is lumped into the CFS cohort it is unlikely that any study of CFS will go anywhere...as it hasn't for many decades.
 
Messages
63
PTSD is undoubtedly a neurological condition with its own spectrum of symptoms, some of which may be similar to CFS. CFS is a condition defined by an "outbreak" occurring at Incline Village near Lake Tahoe, sharing many characteristics with earlier "outbreaks" that appear to be the same, or very similar, condition. Any proposed "cause" of CFS that can't account for the outbreaks, can't possibly account for CFS. It would be quite a stretch to attribute any of these outbreaks to PTSD. I would think then that by definition, PTSD is not CFS and does not cause CFS.

As long as any condition that shares any characteristic with CFS is lumped into the CFS cohort it is unlikely that any study of CFS will go anywhere...as it hasn't for many decades.

thanks for that. Very insightful. My guess is the insane stress I have had since last fall is a contributor but not a cause. That stress is affecting my body and brain in so many ways and so maybe that caused something else that contributed to CFS. All I know is I finally came to a conclusion after a very intense week of writing about my struggles with life as an autistic, that I can now move forward and tell the people who’ve hurt me so much what they did and how it affected me and how I forgive them. And so I’m still dealing with stress but I feel a big load is off my chest and my CFS symptoms have reduced a bit. That’s really interesting to me.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
My guess is the insane stress I have had since last fall is a contributor but not a cause. That stress is affecting my body and brain in so many ways and so maybe that caused something else that contributed to CFS.

I think stress, which definitely includes PTSD, is often a contributing factor in ME/CFS. When I first got ME/CFS 43 years ago, I was experiencing a lot of stress and got a viral infection too. Together they triggered my ME/CFS.

About 15-16 years ago my ME/CFS was mild and I was jogging 15-20 minutes every other day. Until I got some devastating news that sent me reeling mentally and emotionally. I got much sicker and became mostly bedridden for several years.

While I don't think ME/CFS is caused by stress or PTSD alone, I do think that stress can be a contributing factor for some of us. Then there are some of us that stress didn't play much of a role if any.

Infections from viruses (Covid 19 being the latest), Giardia- (which is is an parasitic infection in your small intestine ) and others can trigger ME/CFS too. Without stress playing any part of it.
 
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Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
That stress is affecting my body and brain in so many ways and so maybe that caused something else that contributed to CFS
Stress definitely affects the immune system, and thus I think can make one more susceptible to ME/CFS.

Stress certainly does activate the sympathetic neuroendocrine system, which suppresses the immune system...
 

LINE

Senior Member
Messages
758
Location
USA
At one time, the medical community thought that there was the mind/body connection but new information shows there is the body/mind connection as well. One of my favorite studies is the NEI system (Neurological, Endocrine and Immune systems) which basically states that these 3 systems are wired together, e.g. that they interconnect and influence each other.

There is no doubt that immunity can affect the neurological, there are several reasons for this including cytokines (immune) that influence neurological. Certainly, there is the mind/body connect, a good example is that mental stress triggers cortisol (and other hormones), with high cortisol, there is immune suppression. It is a twisted tale,

The key seems to be the HPA axis (Hypothalamus, Pituitary, Adrenal) which is triggered with body or biological stress (infections, toxins) and by emotional (trauma, generalized stress).

Body/Mind
https://ajp.psychiatryonline.org/do...endocrine effects. ... 4 Behavioral effects.

Mind/Body
https://www.scq.ubc.ca/stress-cortisol-and-the-immune-system-what-makes-us-get-sick/
 

Booble

Senior Member
Messages
1,359
I look at it as an accumulation of different things on bodies that are "on-guard."
There are a menu of things: stress, molds, virus, foods, etc, etc, etc.).

A body that has become (or born) on guard that is assaulted with any or a combination from the menu can get stuck in the ME/CFS situation.
 

geraldt52

Senior Member
Messages
599
I look at it as an accumulation of different things on bodies that are "on-guard."
There are a menu of things: stress, molds, virus, foods, etc, etc, etc.).

A body that has become (or born) on guard that is assaulted with any or a combination from the menu can get stuck in the ME/CFS situation.

I still have a problem reconciling that idea with the reality of the Incline Village outbreak which defined CFS. What are the odds that a random group of people together in a random place at a random time, with little history in common, would all share some "susceptibility history" that explains their illness. It seems way more likely that they all encountered "something" at that time, and in that place that explains their illness.

The CDC couldn't have cared less at the time...and really don't care much more even now.
 

Booble

Senior Member
Messages
1,359
Oh, I did not mean to imply that one had to encounter multiple things nor that one had to have an overly sensitive system. The reality is that all human body's are on-guard. That's how we work. What I mean is that the more on-guard your system, the less of those instigating factors are needed. An instigating factor that is huge doesn't require an overly on-guard body.

I think if you pigeon hole CFS into definitively _____, then you leave out a lot of people who are suffering.
That is why solutions are so challenging, in my opinion.
 

Rufous McKinney

Senior Member
Messages
12,757
What I mean is that the more on-guard your system, the less of those instigating factors are needed. An instigating factor that is huge doesn't require an overly on-guard body.

I think these factors can contribute, particularly to the ME condition worsening.

I experienced a severely stressful situation that worsened my "already deteriorating from too much stress" state...I went downhill rapidly following this event. There was: a type of sliding downward- that occurred after about 4 months, then again at 6 months: and I've been much worse ever since.

Its odd that I had this- six month period of worsening AFTER the stressful event.

I've considered that in my case, I had a lifetime of mild ME, Eppstein Barr variety; then I started getting severe gastroenteritis...hard to distinguish from- thinking I keep getting some stomach flu. Or that norovirus loves me. It was not food poisoning. So I wonder if I picked up an enterovirus- on top of the Eppstein B.
 

Booble

Senior Member
Messages
1,359
I think these factors can contribute, particularly to the ME condition worsening.

I experienced a severely stressful situation that worsened my "already deteriorating from too much stress" state...I went downhill rapidly following this event. There was: a type of sliding downward- that occurred after about 4 months, then again at 6 months: and I've been much worse ever since.

Its odd that I had this- six month period of worsening AFTER the stressful event.

I've considered that in my case, I had a lifetime of mild ME, Eppstein Barr variety; then I started getting severe gastroenteritis...hard to distinguish from- thinking I keep getting some stomach flu. Or that norovirus loves me. It was not food poisoning. So I wonder if I picked up an enterovirus- on top of the Eppstein B.

I think experiencing things after the event is common. For example upon the death of a parent, it is said that often 6 months later is when it will hit you.

I'm with you in the same boat of a lifetime of mild ME, POTS, etc. getting ramped up from various other things.
 
Messages
180
I agree, definitely one of the causes. I'm a big fan of Somatic Experiencing. The "inventor" Peter Levine in most of his books tells the story of "Nancy", the patient who really gave him the idea of SE. And she had CFS which improved a great deal because of his treatment.
 

geraldt52

Senior Member
Messages
599
...I think if you pigeon hole CFS into definitively _____, then you leave out a lot of people who are suffering.
That is why solutions are so challenging, in my opinion.

There is a difference between leaving people out, and leaving people out of a specific cohort. Everyone deserves to have their complaints heard, taken seriously, and their illness studied or treated. But if a cohort isn't as absolutely homogenous as possible then any study of that cohort is likely to be studying a variety of different conditions with a variety of different "causes"...and the study is likely to go nowhere, which is where every CFS study to date has gone.

The NIH was pretty meticulous about their cohort selection, and still apparently had many persons that were found to have other conditions that explained their symptoms, and those persons had to be removed from the cohort to avoid distorting the results. For example, there is nothing to be gained by including a person with an undiscovered underlying thyroid condition in a study of CFS, as an underlying thyroid condition should exclude someone from a proper diagnosis of CFS...not that they aren't ill, just that they don't have what has been defined as CFS.
 

Booble

Senior Member
Messages
1,359
I agree with that, Gerald.
Those with other fatiguing conditions should not be included in studies in CFS.

The challenge as I see it is that you might want to define CFS particularly in the way you experience it and your etiology and yet we've seen to date that there may very well be a variety of pathways and a variety of resulting effects.
 
Messages
63
I created this thread and have an update.

i tested positive for all mold toxins. Stress has been high. PTSD from work abuse and my dad passed late last year thought it wasn’t a surprise.

my fatigue doc agrees that stress is a contributing factor but is confident the root is mold exposure.

11 years in an apt full of mold that I thought was harmless.

my stress levels are lower now and some of my fatigue symptoms are a little less severe but I’m still dealing with a lack of restorative sleep, actual fatigue, some joint pain, air hunger and brain fog.

we tested everything before he diagnosed CFS. 60+ of blood tests, thyroid scan. Brain MRI. Met with 8 specialists along the way.

clearly evidence that mold is my root if you ask me.

im gonna post in the mold area cause I have to sort thru whether I should move apts or move to a dry climate. I’m in NYC.

i also have a potential law suit here with my landlord. I wonder if judges are likely to diminish my CFS as something in my head.
 

Booble

Senior Member
Messages
1,359
Glad you are getting to the root of your issue!
Your landlord won't be able to diminish if you have evidence of mold in the apartment and sensitivity on your side. That said, a landlord fight might be the last thing you need right now. Maybe focus on looking forward with a potential light at the end of the tunnel?
 
Messages
63
Glad you are getting to the root of your issue!
Your landlord won't be able to diminish if you have evidence of mold in the apartment and sensitivity on your side. That said, a landlord fight might be the last thing you need right now. Maybe focus on looking forward with a potential light at the end of the tunnel?

im not like most folks. For me confronting this and holding them accountable is part of my healing. I’m a bit of a paradox. My brain doesn’t work like most and I don’t think like most.

Im an autistic savant with savant qualities across every genius area but art. My way is typically seen as counterproductive but my doctors have realized over time what works for most doesn’t work for me.

lots of great advocacy work being done in the CFS camp. Someday I will likely get involved, if I can. But my focus is on me and my family now. Help with my healthcare costs is going to benefit us too. That comes with a suit or settlement. But I’m realistic a suit is complex because CFS is so misunderstood and so complex.

setting a legal precedent for protections for CFS patients with mold exposure would be a big deal for others in my state.
 
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Booble

Senior Member
Messages
1,359
I hear you. I'm not comfortable with people getting away with things too.
In this case though, it depends on whether or not your landlord knew that there was mold and whether or not your landlord knew that you were overly sensitive. I would take those two factors into consideration.
It sounds like you have only become aware of your sensitivity today and if 99 other people could have lived in the apartment as is then I think that's worth considering in your decision on next steps.
I'm not trying to come down on you, just putting myself in the landlord's shoes for a moment. If he or she has done something egregious -- go get 'em. But if it's just that you think you can build a case and get something from them then I'd consider otherwise.
Meanwhile, congrats on getting some solid answers. I'm a mold-y person too and it's hell. I live in a tropical rain forest -- go figure.
Best of luck to you, Double B!
 
Messages
63
I hear you. I'm not comfortable with people getting away with things too.
In this case though, it depends on whether or not your landlord knew that there was mold and whether or not your landlord knew that you were overly sensitive. I would take those two factors into consideration.
It sounds like you have only become aware of your sensitivity today and if 99 other people could have lived in the apartment as is then I think that's worth considering in your decision on next steps.
I'm not trying to come down on you, just putting myself in the landlord's shoes for a moment. If he or she has done something egregious -- go get 'em. But if it's just that you think you can build a case and get something from them then I'd consider otherwise.
Meanwhile, congrats on getting some solid answers. I'm a mold-y person too and it's hell. I live in a tropical rain forest -- go figure.
Best of luck to you, Double B!

i agree with that.

the mold is everywhere and I communicated in writing.