Anyone's symptoms get worse after doing anything stress related?

[oision27]

I want to here from people who experience PEM and what the resulting symptoms are from PEM.

 

[Wishful]

There's already some of that information, and a poll, in the slightly earlier thread 'Stress Makes PEM Worse?'

I'm not sure what aspect of stress makes PEM worse. It might be the additional neural demands, or maybe stress hormones, or both, or something else. I've had the effect from activities that require extra alertness, even though it's wasn't what I would call stressful. Driving a garden tractor (snowblowing) at extra slow speed didn't trigger extra PEM or even regular PEM. Driving it a little bit faster and having to take more care in steering, to avoid catching on the snowbank, did trigger cerebrally-induced PEM. Playing a FPS computer game, which does require extra processing, and should trigger some stress hormones, doesn't trigger PEM; I find it relaxing.

For me, stress seems to make my regular PEM symptoms worse. It's hard to identify one symptoms being elevated more than the others.

 

[oision27]

There's already some of that information, and a poll, in the slightly earlier thread 'Stress Makes PEM Worse?'

I'm not sure what aspect of stress makes PEM worse. It might be the additional neural demands, or maybe stress hormones, or both, or something else. I've had the effect from activities that require extra alertness, even though it's wasn't what I would call stressful. Driving a garden tractor (snowblowing) at extra slow speed didn't trigger extra PEM or even regular PEM. Driving it a little bit faster and having to take more care in steering, to avoid catching on the snowbank, did trigger cerebrally-induced PEM. Playing a FPS computer game, which does require extra processing, and should trigger some stress hormones, doesn't trigger PEM; I find it relaxing.

For me, stress seems to make my regular PEM symptoms worse. It's hard to identify one symptoms being elevated more than the others.

This is what I believe to be the cause of PEM in the case of my illness please give this a read and tell me if any of this is relevant to your condition.

 

[valentinelynx]

You might try breaking your text up into small readable sections (that is, please add paragraphs, and put a line break between the paragraphs). Many ME/CFS patients find reading large blocks of text difficult to impossible.

 

[oision27]

This is what I believe to be the cause of PEM in the case of my illness please give this a read and tell me if any of this is relevant to your condition.

OK thanks for the advice

 

[Wishful]

I'm unclear about which subgroup your theory fits, but it doesn't seem to fit all subgroups. For me, physically-induced PEM has a consistent ~24 hr delay. Other people have much shorter delays. See how that fits your theory.

Also, I've taken prednisone, and it didn't trigger extra fatigue. The first two times, it triggered temporary remission. I don't know whether the immune system would differentiate between cortisol and prednisone. Prednisone does reduce production of cortisol, but I don't think a small reduction in cortisol would cause a significant reduction in autoimmune response.

Do your symptoms rise and fall with the cortisol cycle? My PEM symptoms don't seem any worse in the morning (peak cortisol). My overall ME symptoms get worse in the afternoon.

Try thinking your theory through with timing in mind: cortisol peaks, autoimmune response times, etc. You might find that it fits, or you might find an obvious flaw.

Another thing to keep in mind: temporary remission. Does your theory explain why an ME victim can, over the space of minutes, switch back to full health, stay that way for hours, and then switch back to ME? I don't think autoimmune reactions work that way, but I'm not an expert.

Personally, I don't think ME is an autoimmune response. I think there's something interfering with the 'return to normal' state after an immune response.

 

[Wishful]

One thing that might be useful is a list of responses to various types of stresses. Does a fright trigger PEM, or make existing PEM symptoms more severe? Does the stress of frustration do it? Anger? Grief?

All responses welcome. Maybe something interesting will result. I live a pretty low-stress lifestyle, so it's been a long time since I've had significant emotional stressors. Maybe someone else has been scared by something, been angry (at a lousy doctor?), or lost a loved one, and noticed a major change in their symptoms.

 

[oision27]

I'm unclear about which subgroup your theory fits, but it doesn't seem to fit all subgroups. For me, physically-induced PEM has a consistent ~24 hr delay. Other people have much shorter delays. See how that fits your theory.

Also, I've taken prednisone, and it didn't trigger extra fatigue. The first two times, it triggered temporary remission. I don't know whether the immune system would differentiate between cortisol and prednisone. Prednisone does reduce production of cortisol, but I don't think a small reduction in cortisol would cause a significant reduction in autoimmune response.

Do your symptoms rise and fall with the cortisol cycle? My PEM symptoms don't seem any worse in the morning (peak cortisol). My overall ME symptoms get worse in the afternoon.

Try thinking your theory through with timing in mind: cortisol peaks, autoimmune response times, etc. You might find that it fits, or you might find an obvious flaw.

Another thing to keep in mind: temporary remission. Does your theory explain why an ME victim can, over the space of minutes, switch back to full health, stay that way for hours, and then switch back to ME? I don't think autoimmune reactions work that way, but I'm not an expert.

Personally, I don't think ME is an autoimmune response. I think there's something interfering with the 'return to normal' state after an immune response.

I think most people with ME do not have an auto immune condition, how ever I am fully confident that I do. My symptoms are fully dependent to the relation of the activation of the HPA axis, how do I know this?

I know this because I understand how the HPA axis works and what can stimulate it, knowing this i can control the severity of my illness by avoiding stimulation. I know my condition has immune system written all over it as my symptom and all immune modulated. Furthermore, to confirm my theory I injected synthetic ACTH into my bloodstream where by doing so I should flop like a pancake if my hypothesis is correct, this reaction did occur as I did indeed flop like a pancake.


I have thought about the normal cortisol cycle and yes my symptoms are generally in accordance to this cycle.

 

[Haso]

wishful ill add the link to the thread your talking about

https://forums.phoenixrising.me/threads/stress-makes-pem-worse.75258/post-2182500

 

[oision27]

One thing that might be useful is a list of responses to various types of stresses. Does a fright trigger PEM, or make existing PEM symptoms more severe? Does the stress of frustration do it? Anger? Grief?

All responses welcome. Maybe something interesting will result. I live a pretty low-stress lifestyle, so it's been a long time since I've had significant emotional stressors. Maybe someone else has been scared by something, been angry (at a lousy doctor?), or lost a loved one, and noticed a major change in their symptoms.

Anything that stimulate the response of the HPA axis will make me worse, negative emotions, change in temperature, sun light, loud noises, etc. This response is automatic however you can hinder this response by movement this is seen in people with autism as it works to stop stimulation of the HPA axis.

 

[Wishful]

One problem with solving ME is that there seem to be many subgroups with wildly different triggers and responses. If you're right about your ME being linked to an autoimmune response to cortisol, it doesn't really make much progress towards solving ME, because it would just be identifying one more trigger to whatever the core dysfunction is. I had a type IV food sensitivity, and the immune response to that (t-cells) would make my ME symptoms worse. I managed to stop the t-cell reactions to food, but the baseline ME symptoms remained. If you managed to stop your autoimmune response to cortisol, you might stop the worsening from rising cortisol, but still have ME symptoms.

I'm waiting for the researchers to figure out the core dysfunction. I think some of the research, such as into viruses causing ME, will prove to be dead ends as far as finding a treatment is concerned.

 

[Rufous McKinney]

who experience PEM and what the resulting symptoms are from PEM.

Thats probably a topic of discussion in numerous threads, so search prior Posts. Happy to share my version.

Physical mental and emotional exertion beyond very minimal levels triggers profound fatigue. That then triggers prolonged crashes. Like you drove into a ditch and now cannot get the car out (Annie Proulx a famous author: wrote a short story entitied: Tits Up in a Ditch (thats an old saying, where you discover your cow went missing.)

Link to story: https://www.newyorker.com/magazine/2008/06/09/tits-up-in-a-ditch

The level of crash, duration, and non-effort required to then pull out of that ditch: is truely remarkable.

So: lunch with a friend- I will get severe throat pain from chatting for more than say 1/2 hour. Sick for days.
Walked around one small city block: 10 day crash duration to recover to: puny condition pre-walk. On a day where I did the laundry despite being in a crash, I was unable to lift a towel, unable to divert my body around an obstacle. Currently have about a two hour window midday for: slight operationally functioning.

 

[sb4]

I do respond to stress poorly. Not mentally but physically. My heart problems are my worst symptom as it is, but every now and then when I'm getting carried away with the progress I've made over the past few years, a moderate stressor will appear and knock me back down to reality.

My heart will increase it's pounding and rate but it feels like it doesn't have the energy to do so. It's almost like my body is too drained to mount a proper stress response any more. I will feel very weak and when I was at my worst this lead to full blown heart attack like symptoms including numb limbs, aching up my left chest and down my left arm, freezing cold but sweating, and an intense feeling of imminent doom.

I would speculate that my heart is already struggling pumping blood around my body at rest, then when a stress appears, certain hormones/signals tell the heart to do more work and it tries but it cannot keep up.

 

[Rufous McKinney]

tell me if any of this is relevant to your condition

Thanks for this and I will wade thru it over a bit of time...I've just personally did a carefully executed self treatment and observed very carefully the PEM over the course of the next 9 days it took to recover from walking around the block two days in a row; and one day, chatting to a friend on a sidewalk for 1/2 hour. (horribly ill for next 9 days).

 

[Rufous McKinney]

It's almost like my body is too drained to mount a proper stress response any more

I experienced that so acutely recently. Around here, I normally would maybe have a day now and then where I can go out and do a little something. Figure I'll be really tired for a few days afterwards.

But I tried to see: what would happen if I pushed. So I walked around the block on a day I felt kinda soso/ok. Just a small block. Felt strange but good, the legs had that nice kinda tired feeling that they moved a bit. But then I did it again. Day 2 so so. Day 3: I went out again THERE WAS the serious error. I simply stood, and talked to somebody for 20 minutes. 100 feet from my door. (This kind person suggested, if I was fatigued, that I take a dance class). (add emotional distress upon returning home from contact with another living person and processing the inputs).

So it then for days felt like the most severe bout of PEM I've ever had. Its like there is something in our bodies we have RUN OUT OF ENTIRELY. Its just not there. I could NOT LIFT MY ARM, like paralyzed, it was holding a towel.
A guy walked around the corner and I couldn't get out of his way I"m just kinda paralyzed. And my heart got really weirded out.

So this was a huge personal experiment (I even took notes and developed a calendar). And the outcome was not pretty.

 

[Rufous McKinney]

I'm waiting for the researchers to figure out the core dysfunction.

For whatever reason, the starved for oxygen seems so key. The why: I have no clue. But the feeling that oxygen isn't reaching anywhere it needs to arrive at and/or the energy units needed on some really basic level like obviously the mitochondria: just aren't producing whatever they are supposed to produce. And everything downstream of this lack is: corrupted.

I observe lots of mental exhaustion and emotional as I am both. So I might be thinking about pondering something and its kinda working. Then it starts to just: unravel. Again: something has been used up and now the two thoughts cannot be strung together.

 

[Wishful]

For whatever reason, the starved for oxygen seems so key.

It doesn't seem so for me; no oxygen starvation. I don't experience any physical limitations; for me it's mental lethargy. My guess is that--for the mental lethargy--there's impairment of neuron operation. I don't know if it's a lack of something, an accumulation of something, or something like sickness response, where some other part of the brain is intentionally causing the fatigue effect as a protective measure.

 

[Rufous McKinney]

there's impairment of neuron operation

I guess I could decide my neurons are lame because they lack oxygen, also.

Illustrations have a strong effect on me. So: those none deforming red blood cells: I see them. The resistent mitochrondria things not entering: I see that. The pink in the brain/ that pink lactate looks like: no oxygen.

 

[gregh286]

I do respond to stress poorly. Not mentally but physically. My heart problems are my worst symptom as it is, but every now and then when I'm getting carried away with the progress I've made over the past few years, a moderate stressor will appear and knock me back down to reality.

My heart will increase it's pounding and rate but it feels like it doesn't have the energy to do so. It's almost like my body is too drained to mount a proper stress response any more. I will feel very weak and when I was at my worst this lead to full blown heart attack like symptoms including numb limbs, aching up my left chest and down my left arm, freezing cold but sweating, and an intense feeling of imminent doom.

I would speculate that my heart is already struggling pumping blood around my body at rest, then when a stress appears, certain hormones/signals tell the heart to do more work and it tries but it cannot keep up.

Yea can relate. As your arteries are.not.blocked unlikely to die. Pass out is possible.
This goes back to the TIF1 where cells are not breathing at all. We are suffocating internally. Strangled from inside.

 

[Wishful]

@oision27 I did think of one weakness in your theory: cortisol affects the immune system in many ways, directly and indirectly, so whatever effects you observe from a rise in cortisol do not require that it be from an autoimmune response. To verify it, you'd have to get an immunologist to test for antibodies for cortisol.