Old 02-03-2018, 07:00 PM #1 (permalink)
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Default fight or flight

I recently had fibro explained to me in the sense that fibro was fight or flight response in the brain that can't turn off.....it makes sense...i think ?

has anyone else had it explained to them as this and does this make sense to you?
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Old 02-06-2018, 02:00 PM #2 (permalink)
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Default Re: fight or flight

no, and no.
The fight or flight mechanism is the adrenal response and that is different from fibro, as far as I know. But I am no expert. I have had adrenal problems (many years ago, resolved) and that was completely different from what I experience with fibro.
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Old 02-07-2018, 07:34 AM #3 (permalink)
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Default Re: fight or flight

Yes in my case im 100% sure mine was caused by the flight or fight response being fired for too long too often after several years of extremely high unrelenting stress.

There is a belief which in my case i agree with that the HPA axis eventually dysfunctions ....in turn the parasympathetic nervous system starts to fail to work to calm the sns ( fight or flight response) and we are basically stuck in fight or flight some at low grade some at a higher grade and this is why even minor stress which ramps up the fight or flight even more increases our pain or brings on new symptoms.

Its why holistic calming methods are useful in the early stages and milder cases of fibro or CFS along with moderate exercise and just taking care of your self gives us the best chance of keeping this illness under some control.

I myself continued to be subjected to high stress and its not the stressor itself its the way each individual is wired to respond to stress in the first place...so for example i would cope fine if my roof blew off as practical things don't stress me much but if a relationship breaks down or a loved one is sick my stress even with all my might i try and deal with tears at my soul....and would definitely send my pain and fatigue levels through the roof.

If long term unresolvable things that upset me cant be fixed then i get knew permanent pain patterns and symptoms that never resolve to a tolerable level again.

However as sunkcola says others do not agree this is the cause of fibro and nothing has been proved....its just my own personal opinion and one many professionals share.
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Old 02-07-2018, 04:24 PM #4 (permalink)
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Default Re: fight or flight

diamond, that is interesting.
and I don't doubt for a minute that you know what you are talking about, at least for your own case. And it makes sense considering that stress exacerbates our condition so much.

For myself, I just don't know. I do know that there has been a lot of stress in my life, combined with my not being especially skilled at handling stress for much of my life. I am a thousand times better at handling it now, but now I have the fibro to deal with anyway. It is such a tangled and convoluted kind of disorder that it is unlikely to be caused by any one thing, even in one individual. There are probably genetic aspects, propensities, perhaps unbalances in the chemicals of the body or brain, all kinds of things in addition to environmental aspects.

I wish that more were known about it. I find it so frustrating when I am faced with telling someone about it. Usually I preface everything I say by saying that if someone told me this and I didn't know that I could trust that person to be honest and not be just trying to get attention, I probably would not even believe them, so if they don't believe me I won't be upset or try to get them to believe me. Fibro sounds like something a person would make up.

And if someone says it is purely psychosomatic, well, maybe they are even right! Which doesn't help you or me one bit if we are spending the day lying on the couch in too much pain even to read a book or take a walk or fix something to eat. I would be very happy to find out it was "purely psychosomatic" .....or anything else you choose......if it would only mean that there was a treatment for it other than taking heavy duty pain medication. I'd do anything. change my diet. Do certain exercises. Sit on a flagpole and sing the national anthem every morning. whatever.
But there doesn't seem to be anything that actually helps.
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Old 02-08-2018, 09:10 AM #5 (permalink)
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Default Re: fight or flight

LOL you made me laugh Sunkacola.....Sit on a flagpole and sing the national anthem every morning...whatever helps!

I agree...and i also agree there are other factors like genetics and environmental factors and ability to handle stress....and lets face it even healthy people break down sometimes with too much stress and end up needing psychiatric treatment but they don't all get fibro or CFS.

Plus there are so may other stressors that might be the cause....surgery.. accidents... infections...who knows.

There are so many theories ...that the spinal cord and over activated cns increase pain signals....others say body wide inflammation....others say it starts in the gut where seratonin is mostly made...the happy brain balancing chemicals.

I am by no means an expert...i just know my own life and how mine always got worse with high emotions...even happy emotions like excitement sent my fight or flight running and then it didnt shut off all day in the couple of years before fibro finally settled in!

I would feel supercharged and highly wired say if i went up in a cable car on holiday long after the journey was over...so what was a normal level of anticipation would make adrenaline kick in but rather than stop like a normal persons after the cable car trip was over mine just kept running for the rest of the day.

It was like a mechanism in my brain...as in the parasympathetic nervous system was failing to kick in and shut down the release of adrenaline from something even pleasurable.

I wasn't at all anxious...quite the reverse i was having a great time and carried on the day seemingly fine but i could feel adrenaline surges that just wouldn't stop once this switch earlier had kicked the stress hormones off.

My system was basically chucking out too much adrenaline because in the years previous i had very traumatic time and seemed to have caused this dysfunction.

I was aware of this for a few years before fibro kicked in and i couldn't even make a doctor understand!!!...so started to avoid things that over stimulated my brain and senses as even enjoyable and high energy things would mean i was wired up and couldn't sleep.

If you think people with PTSD where they are wired 24/7 are very prone to getting fibro....the theory makes sense.

Just fixing it and living with it like you say is the problem....so yep count me in on the flag pole if it would help!

Last edited by diamond : 02-08-2018 at 09:19 AM
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Old 02-08-2018, 11:47 AM #6 (permalink)
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Default Re: fight or flight

Diamond, I experienced that adrenal surge for no good reason when my adrenal reflex got knocked completely out of whack because I had been in too much of a high stress environment too constantly and for too long. I also had PTSD from being in a state of fight-or-flight 24 hours a day for several weeks until I got out of the situation. It took many weeks longer to settle back into normal than the precipitating event took, but it did eventually go back to normal, thank goodness.

Still......who's to say what something like that experience might do to the body long term?
Which, as you say, doesn't explain why some people develop fibro and others don't.

I guess I am just really tired of not having anything that I can actively do about this.
Lately I have had some very bad flare days, and then I got the 'flu, which I am still recovering from. (don't get it. it is a bad one)

What has been happening the past three days is a new one for me. It's only my right thigh, and feels as though the bone is in a vise, crushing it. The pain meds, which normally last 8 hours, are only working for 2 to 3 hours on this and I cannot take more of them.
So, I lie with a heating pad on my thigh and twitch and whimper.
Wake up in the night with it suddenly hurting so badly it makes me almost leap out of bed.
Or, I get up and limp around the house.
It is pathetic.

The first day, I tried to massage the muscle to see if it would help, and any pressure anywhere felt as though I were being jabbed with a poker. The next day and today the pain is the same, but touching or massaging the muscle doesn't hurt at all. doesn't help, but doesn't hurt either.
And why?? No one can tell us.

My body just keeps coming back with familiar patterns of pain, and then every now and then, like the thigh thing, comes up with new and ever-more-creative areas and ways to offer me fresh pain.

I just want to live a normal life. Really, I am very lucky because a lot of the time I can at least pretend to do so, pretend that I have nothing wrong. But it takes a lot of energy to uphold that and sometimes I feel resentment towards my own body for giving me this pain. I don't want to feel that way. I really like my body, and it's a good body, except for this.

Glad I gave you a laugh at least.
My dogs and cat do that for me, and I am so grateful to them for that. It really is the best medicine, isn't it.
I only wish it worked to fix whatever it is that is wrong with us.
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Old 02-09-2018, 02:48 AM #7 (permalink)
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Default Re: fight or flight

Hi Sunkacola..i hope the thigh pain you speak of is passing.

You and i have had many conversations and its is this bone crushing pain in a vice i have head to toe 24/7 for these last 3 or 4 years. Its unbearable to touch or massage or lay on your own body as that just increases the pain let alone do more than shuffle around with this pain in my feet knees both legs and upper body too....and my girls parts and bottom most of the time so sitting is also so painful.

I get the whimper out loud..as you know i live with my 4 hot water bottles as my constant companions and is why i have been unable to exercise...yet so frustrated because i know if i dont my muscles and joints ...well they have weakened.

My fibro flares even in my better years did this kind of pain to me with any stress and also through over activity or just randomly somewhere most days ..usually both legs for part of each day....so was a big challenge but at least i could walk for an hour or so quite often back then and do other things slowly with my upper body ... even if i paid later.

It is why i have struggled to understand how some fibro folk could run or swim or walk miles and say they would hurt anyway so why not hurt being active ..but the forum has taught me every ones fibro is different and for everyone its horrible!

I was stuck in fight or flight for several years....i also believe i had ptsd but it was from a situation i should have got out of but didn't for all sorts of complex reasons thinking i would with my own mental strength overcome this sns over reaction to triggers...sadly that didn't happen except short term and yes i did start to recover......then again trying to help another person while i felt so much better i went back into the situation that caused frequent release of adrenaline and before long i had fibro.

I send you my very best wished..take care of yourself.....maybe the nasty flu...yes we have it too in the UK, has caused your fibro to flare and i hope in a few days your feeling much better than now.

Last edited by diamond : 02-09-2018 at 03:04 AM
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Old 02-09-2018, 12:39 PM #8 (permalink)
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Default Re: fight or flight

Thanks, Diamond. I sure am hoping that the flu caused this latest thing in my thigh, because I would hate for it to become a part of my daily life. It is possibly the worst pain that I have had with the fibro so far. I keep trying things to help it, but the reaction is so capricious! One time I will try walking around and it helps, but the next time it does nothing. One time I will try exercising and stretching and it helps, the next time it makes it worse! How is this even possible? And I know if I went and has them do xrays and an mri and whatever else they could do on my legs, they'd find nothing.

One time recently when I was out of bed in the middle of the night I found myself almost wishing that it could turn out there was a tumor in my leg, because at least then there'd be a treatment for it.
How pathetic is that. Of course, I don't wish for that. but at three AM one thinks of a lot of weird things.

If your pain is like what I have been having and you have it all the time I truly do not know how you can live with it.
But, then, does one have a choice?

Well, sure, I guess there's that choice.
But how many of us really want to do something that drastic and permanent. I don't. You don't. So here we are.

For me, the reason that I can walk miles or hike or dance and so on is that my pain is not 24-7. It comes and goes and when it is not there, or is there but at a low level, I can put it away in a box in my mind and distract myself from it and go do things. Often I end up paying for it because I tend to overdo out of sheer enthusiasm for being able to do these things I love to do, and then I pay for it in pain, but I don't really care. I am just grateful for the times I can do stuff. On those days I can convince myself for a while that I don't have anything wrong with me.

But even on my worst days I still have to get up and do what needs to be done because I am the only person here and no one is going to help me - I have to do whatever needs doing...feed and groom the animals, clean up the house, do the laundry, deal with whatever breaks down...
And, make some money.
Sometimes I really wish I did not always have to face and manage absolutely every single thing by myself. I am used to it, but still.

Sometimes I resent it when people who have a good partner and no fibro complain about their lives. They are not grateful for what they have. They have no idea how lucky they are to have healthy bodies and a helpful partner and I would like to give them what I live with just for a half an hour. But mostly it just reminds me that I also have much to be thankful for and I focus on that, and let that resentment go away.

Sending you a gentle hug, Diamond.
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Old 02-10-2018, 12:22 AM #9 (permalink)
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Default Re: fight or flight

I dont know how im living like it either tbh....its not living at all and strong meds so far including fentanyl and tramadol havent helped at all....just make me sick and zombie like.

I have pretty much stopped contributing to the forum too as i know as ive got worse i became more negative but being housebound for 3 years and mostly in bed is really hard...if i say i struggle to stand long enough to brush my teeth and cleanse my face let alone push to get a shower for years now you will get the picture...its pain off the scale of any normal understanding and shocking when you hav coped for years then discover this illness knows no bounds no matter how hard you try .

i wouldnt wish this on anyone...and long even for my old fibro and that was bad enough but at least i could walk for short distances and go for car ride without too much discomfort some days and potter around in short bursts and get things i love around the house and garden done....yes maybe pay later but who cares its so wonderful to do things....and i would recover again at some point and be able to do it again.
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Old 02-10-2018, 10:44 AM #10 (permalink)
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Default Re: fight or flight

Well, Diamond, I truly feel for you.
I guess that about the only thing you can do is hang in there and find as much distraction and pleasure as you can in life, in spite of everything. Read books you love, watch movies that are entertaining for you, find things that make you laugh, and so on.

I read a book one time written by someone who was in solitary confinement on death row for 16 years for a crime he had absolutely nothing to do with, and what he said about surviving that experience has stuck with me.

He said that one thing was to spend the time doing something meaningful. For him that was doing his best to work out in a cell the size of a king size bed, in order to stay strong physically, and reading material that educated him, and meditating for long periods of time, and writing letters to people on the outside who supported his case.

He also said that you have to have something to look forward to. In his situation, he had to make things because the prison certainly didn't give him anything to look forward to. So, for instance, he really loved peppermint, but would only allow himself to have peppermint in December so that he could look forward to it. Things like that.
And he also remembered every day to be grateful for something.

For you, one meaningful thing you do is contribute to this (and other?) forum(s) to encourage and educate others. the internet is wonderful for this and allows someone who is shut-in a way to connect and have support and to help others. You can find things or make things to look forward to. Find things that make you laugh.

Here's one for you: go to The Bloggess blog. This woman has written three books and is the funniest person on the internet, I swear. She has multiple serious issues, both physical and psychological, and somehow makes all of them hilarious every time she writes. She is amazing, kind, generous, funny, and adorable, and her blog will lift your spirits and give you a laugh every time.

Another thing I do whenever I find myself feeling resentful of my situation and pain is I remind myself how much worse it could be. There are homeless people who have Fibro as well, and how much worse would it be to feel this pain and not even have a bed or a couch to lie on.

Don't know if any of this is even remotely helpful but hoping that it is, at least a tiny bit.
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Old 02-10-2018, 01:18 PM #11 (permalink)
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Default Re: fight or flight

Thank you for your support... i dont go on any other forums but we have had some laughs on here at different times since i joined in 2015 and i have made a few friends although some come and go but its nice to hear how peoples lives progress ....one i am in contact with by email outside the forum...and i am grateful for that.

I will certainly look at the Bloggess blog...anything for a smile and i think suffering makes us grateful for the tiniest of things.

I know even before i had fibro when i had some tough times i was so appreciative of just the cuddles from my cats.

I think if all human beings could walk in our shoes for a week ..lol maybe a month for a true flavour the world would be a better place....everyone hopefully would get life in perspective and stop and smell the roses so to speak.

I was one of those go getters once...always dressed up..made up hair done perfectly..lol go to the rest room in my breaks at the office to touch up my lipstick.....i look back and think who was that!

But at the same time while im grateful for those years of innocence where i enjoyed frivolity.... but in the end its all meaningless.

Health ..like you say a warm home and comfy bed..if we are lucky a few loved ones or a friend and enough money to buy food and pay utilities is all we need..and if we loose our health well lets be grateful if we have most of the other things.

I cant imagine being homeless with fibro....so tonight i am grateful for your reminder of what i do have....lol hot water bottles and a heating pad ..a nice cup of tea and my laptop giving me access to the world.

Imagine chronic illness and being house bound before the internet!
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Old 02-27-2018, 11:56 AM #12 (permalink)
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Default Re: fight or flight

YES! This is what they are discovering based on my research too. Fight or flight gets reved up and doesn't calm back down as it should then that constant flow of stress hormones begins to take a toll on the body!
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