Horrible Stress?

[Kati]

HI.

One of my most troubling symptoms is the feeling of "stress". Most people feel stress when they are thinking about 100 different things, multitasking, deadlines etc but this is not the case for me.

For example today i needed to make a recipe so i started to google it. I felt unbearable stress just from looking through different recopies and trying to figure out if i have the correct ingredients. After i finally select a recipe i have to lie down for an hour to just recover from the mental load of printing a recipe!

And that's just the start. When i make the recipe my brain is just being fried the whole time. And the worst part if cleaning up afterwards. The stress from cleaning up feels like what i would have felt 5 years ago from doing 24 hours of intense mathametics study AND and exam the next day. After i eat the meal i have to lie down again not due to fatigue but due to brain fatigue (if thats even a term).

The same goes for juicing vegetables. The stress is debilitating.

The only way to describe it is that my thoughts are always in the present. Im not worrying about the future or the past. But my brain feels like its being fried and i feel immense stress. Its like the stress from thinking too much except im not thinking ! Is this glutamate toxicity?

Just wondering if anyone else experiences this, and if they know the cause.

Hi @douglasmich I wonder whether you are suffering from orthostatic intolerance, which can give a great deal of cognitive fog and intense desire to lay back down again.

Thinking requires a whole deal of blood flow to the brain, and when the blood flow is altered to start with, doing so veryically is often more than what we can deal with.

Here is how I deal with it for myself:
-Break down tasks into steps. Do one task for 1-2 minutes, then go lay down for 15 minutes. For instance, if I need to empty the dishwasher, I will break it down in 3 steps for each levels and the silverware.

-have a stool in your kitchen. Everything you can do sitting, by all means, sit. Gather all the food you need to prep, sit down and peel/cut the veggies. Go lay down again.

- if you are worried about leaving a pot on the stove, set a timer.

- everything you can do laying down, do. Oftentime I even eat laying down.

-computer searches requires a lot of thinking power. Math calculations is known to crash me... So I have an ipad and I do that while horizontal.

- I cannot talk and stand. Requires too much thinking and orthostatic stresss. Sit, or lay down.

i hope it helps.

 

[Old Bones]

The symptom does go away when I go on a low carb diet, but I can only do that so long before I run into other problems that are even worse.

@Violeta Low-carb is good for me, short term. In particular, my arthritic symptoms and bloating are substantially reduced. But I, too, run into other problems (insomnia, constipation, dry eyes/skin and weight loss) that make this diet unsustainable. Diet is definitely a balancing act.

 

[Karena]

I also found that it helps if I don't put pressure on myself to do things in a time frame or do them well. My father's favorite saying, "If you can't do things right don't do them at all." This is wrong for us. If I start to feel overwhelmed (key is start) I blank my mind out and/or go lay down until I can finish it. I know for me, part of the problem is fear that my mind won't be able to handle it. Well, it won't, not as well as a healthy person, so I accept that and let go.

Sickness has it's own rules. Isn't it nice that we all live by those rules here and can encourage one another?

That's really good advice. It seems as if people living with ME/CFS need to live by different rules. Your father's advice is great for most folks. I used to follow it. Now I'm lucky to get the most important things done in a semi-slipshod way. I'm constantly reevaluating priorities, so my life doesn't fall apart entirely.

While we're talking about rules, one thing that bothers me is society's attitude that all challenges can be overcome. In the entertainment media, on the web, and even in commercials, people are always celebrating the sick, disabled or elderly person who works hard and returns to leading a normal life.

I understand why this is a good thing. Honestly, I'm glad some people can conquer or learn to live with their problems. But the underlying message is, "If something's wrong with you--and you're a strong person--you'll figure out a way to work, raise your children, play with your grandchildren, and win a golf tournament at your local country club."

No one cheers for the ME/CFS patient who empties the dishwasher, then rests a few minutes so she has the energy to do something else later that day.

 

[Violeta]

@Violeta Low-carb is good for me, short term. In particular, my arthritic symptoms and bloating are substantially reduced. But I, too, run into other problems (insomnia, constipation, dry eyes/skin and weight loss) that make this diet unsustainable. Diet is definitely a balancing act.

Wow, same here! Plus horrible nighttime leg and foot cramps.

 

[jimells]

Not anxiety. Its stress feeling. I rarely get anxiety because my brain fog is so bad i can't think about the future

If I start to do a task and it feels overwhelming, to me that seems to be a signal that completing the task will exceed my energy envelope. I don't have any science to support that.

When the POTS is really bad and I am experiencing hyperadrenergic symptoms like palpitations, feeling hot, sweating hands and feet, I tend to feel really tense. Is that similar to your experience? Anyway, for me I'm quite certain the immediate cause is too much norepinephrine. That's bad news because when the alpha 1 adrenergic receptor is agonized by norepinephrine, one adverse effect is to cause vasoconstriction in the brain - that's gonna cause a lot of problems for us, obviously.

 

[jimells]

But the underlying message is, "If something's wrong with you--and you're a strong person--you'll figure out a way to work, raise your children, play with your grandchildren, and win a golf tournament at your local country club."

The goal is to blame the individuals for whatever happens to them, and to shun anyone seen to be morally deficient. Cutthroat competition is praised and compassion is discouraged, to keep people from working together and forming mutual aid organizations such as labor unions.

Our Dear Leaders depend on divide-and-conquer. This is important, because if people stopped to examine the institutions that are wrecking our lives, well, they might finally break out the torches and pitchforks.

 

[Karena]

The goal is to blame the individuals for whatever happens to them, and to shun anyone seen to be morally deficient. Cutthroat competition is praised and compassion is discouraged, to keep people from working together and forming mutual aid organizations such as labor unions.

Our Dear Leaders depend on divide-and-conquer. This is important, because if people stopped to examine the institutions that are wrecking our lives, well, they might finally break out the torches and pitchforks.

Well said!

 

[ahimsa]

I second everything @Kati said about coping with Orthostatic Intolerance. I joke that my IQ drops by at least 30-40 points when I'm standing up.

And talking is one of the worst things for me. If you ask me a question while I'm standing up I'm liable to just get that "deer in the headlights" stare. That means I have no ability to answer it. Even if it's a really simple question.

No one cheers for the ME/CFS patient who empties the dishwasher, then rests a few minutes so she has the energy to do something else later that day.

This is so true! The simplest task can feel like climbing Mt. Everest.

So let me offer up this cheer -

Hooray for all the ME/cfs patients who managed to do a simple task today!

On the one hand, disabled folks often complain about "disability porn." That's when a disabled person is just doing something normal and the healthy person sees them as being so "inspirational."

But ME patients have the reverse problem. As you said, no one is inspired when we overcome obstacles and manage to accomplish something because they can't tell that there is any obstacle. What we have done looks so trivial and minor.

ME patients deserve a medal for bravery

 

[douglasmich]

Yes its very hard, especially because i love at home. My parents just think im lazy

 

[Violeta]

I have returned to something I thought was the root of my problems many years ago. I am starting to deal with candida and I think it's helping.

This link has a good plan. https://www.candidaplan.com/

 

[u&iraok]

That's really good advice. It seems as if people living with ME/CFS need to live by different rules. Your father's advice is great for most folks. I used to follow it. Now I'm lucky to get the most important things done in a semi-slipshod way. I'm constantly reevaluating priorities, so my life doesn't fall apart entirely.

While we're talking about rules, one thing that bothers me is society's attitude that all challenges can be overcome. In the entertainment media, on the web, and even in commercials, people are always celebrating the sick, disabled or elderly person who works hard and returns to leading a normal life.

I understand why this is a good thing. Honestly, I'm glad some people can conquer or learn to live with their problems. But the underlying message is, "If something's wrong with you--and you're a strong person--you'll figure out a way to work, raise your children, play with your grandchildren, and win a golf tournament at your local country club."

No one cheers for the ME/CFS patient who empties the dishwasher, then rests a few minutes so she has the energy to do something else later that day.

Oh, that is so true about society's attitude that you can overcome. And if not, you're lazy or of weak character. I remember when I was on the Cross Country team in high school and one of the top runners was celebrated for running with an injury. I knew at 15 years old that that was wrong.

I guess that's why we're here, to cheer each other on. Look at that empty dishwasher, wow, good for you!

 

[u&iraok]

@Effi , @Violeta , @u&iraok , your use of the words "overwhelmed" and "overwhelming" describe my situation perfectly. Simple tasks I previously did routinely, and without much thought, are almost impossible to initiate, let alone complete. These include opening the mail, making phone calls, finding my keys, and deciding what to purchase for items as simple as shampoo or toilet paper. And, heaven help me if anything changes the slightest bit (eg. a software upgrade on my iPad, changes to my car when it's in for service). I am hypersensitive to everything, and it seems my brain shuts down as a defense mechanism . It's almost as if an invisible barrier is constructed around me as protection against the slightest stimulation. So, I'm typically on "auto pilot" when away from home interacting with people, not really aware of what's happening. Later, I tend to relive details of the event I missed while in a fog, desperately hoping I behaved appropriately in the moment, and that nobody noticed how vacant I was.

I need routines and things to stay the same too, so that I can go on auto pilot.

I find that social situations are the most tiring for me even though I enjoy them. But even the enjoyment is too overwhelming! Adding to the problem is that I don't want to appear vacant and uninvolved or uncaring so I hyper-engage. Phew, just thinking about it makes me tired. I relive the events, too.

I'm hypersensitive too, but it gets more acute in situations so what suffers is that I don't see or hear things. If you're a big talker I won't hear half of what you say. When I watch tv I miss half of everything and can't watch and listen at the same time. I use subtitles. But driving, I'm really good at because I picked it up from my father who is a good driver and I go into hyperaware mode and can see everything and anticipate what the drivers around me are going to do and have good reflexes. I think I could have been a race car driver. But I hate driving.

 

[u&iraok]

I've heard theories about how ME brain/body is unable to distinguish between important input, and secondary input. Every little thing is processed as a number one priority: driving, rain, kids talking, ... all fighting for attention. maybe to do with low bloodflow + low grade inflammation, and the brain therefore getting into survival mode, then crashing cause there's too much going on? who knows...

@Old Bones making decisions, that's a good one too! such a difference from my pre-ME state...

I've noticed that. I know some children and adults with autism and aspergers or on the spectrum somewhere and my sister teaches autistic kids and they have that problem. It's the same with noise and not being able to block it out or distinguish between important noise and unimportant noise. We end up kind of going into our own world, too, where it's quiet and peaceful and we can control it.

 

[Violeta]

This needs to be reversed before one of the extreme neurological diseases sets in and we are no longer able to think, figure stuff out, or even take and do what we need for ourselves. That is unless you live with someone who will figure it out for you and serve you what you need on a platter.

 

[douglasmich]

This needs to be reversed before one of the extreme neurological diseases sets in and we are no longer able to think, figure stuff out, or even take and do what we need for ourselves. That is unless you live with someone who will figure it out for you and serve you what you need on a platter.

This is my fear, people that seem healthy comedown with cancer and neurological conditions. I have a severe gut dysbiosis, inflammation etc. If anyone gets cancer its going tobe me...

 

[douglasmich]

Also guys another thing that's terrifying.

Literally 20 times per day i forget what i am doing. For example i walk into a room and forget what i was doing. I then have to think hard to remember. It also happens on my phone. I will go on my phone and completely forget why, them think hard for 10 seconds and remember i was googling something.

Its a scaring the hell out of me im scared its permanent

 

[panckage]

Its a scaring the hell out of me im scared its permanent

I know the feeling. When my brain barely works I feel like I've always been that way and it is all my future will be. My brain doesn't work well enough to be able think any other way!

I'm happy to say that it's not permanent, it's just a phase. Currently I feel that way for a few hours a day. I shake too it's weird but for the rest of the day my brain reasonably ok.

I hesitate to give advice on this but LDN really helps my brain fog... In the short term at least

 

[Effi]

@douglasmich This concern has been voiced on PR before. The general consensus is that it is not permanent damage, just something like low bloodflow in the brain that makes thinking and remembering very hard. So please don't worry too much about it.

 

[douglasmich]

@douglasmich This concern has been voiced on PR before. The general consensus is that it is not permanent damage, just something like low bloodflow in the brain that makes thinking and remembering very hard. So please don't worry too much about it.

haha ok. I almost forget what its like to be normal. I feel like im in a dream state 24/7 from the brainfog

 

[u&iraok]

Also guys another thing that's terrifying.

Literally 20 times per day i forget what i am doing. For example i walk into a room and forget what i was doing. I then have to think hard to remember. It also happens on my phone. I will go on my phone and completely forget why, them think hard for 10 seconds and remember i was googling something.

Its a scaring the hell out of me im scared its permanent

Happens to me all the time. But I rarely recall, my recall is gone which is disturbing. I'm left with the annoying feeling you get when you forget but instead of using it to recall I have to wipe that annoying feeling out and forget about it!

So I thought it would help to write things down. I started writing things down and now I'm inundated in papers with things quickly jotted down on them. Since I don't remember what caused me to write most of the things down, I don't remember to remember them. I'd like to invent a planner just for people like us.

I know it's a minor part of your forgetting, but don't worry about walking through the door and forgetting--healthy people do that too, they call it 'the doorway effect': http://www.scientificamerican.com/article/why-walking-through-doorway-makes-you-forget/

"...some forms of memory seem to be optimized to keep information ready-to-hand until its shelf life expires, and then purge that information in favor of new stuff. Radvansky and colleagues call this sort of memory representation an “event model,” and propose that walking through a doorway is a good time to purge your event models because whatever happened in the old room is likely to become less relevant now that you have changed venues."