Anyone else heard of this : I've just... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Anyone else heard of this

Tommygurl profile image
16 Replies

I've just come across this never heard of it before but this is me down to a T 🤔🙉

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Tommygurl profile image
Tommygurl
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16 Replies
Yassytina profile image
YassytinaFMA UK Volunteer

Hello, I have read about this and people who have say have PTS can suffer with Hypervigilavance, , I have read here on the forum people got diagnosed with Fibromaylia after experiencimg a traumatic event , so I can see why there could be a connection, also people suffering with anxiety /depression can suffer with the the above.xx

Tommygurl profile image
Tommygurl in reply to Yassytina

My best friend died when we was 13 yrs old .we lived next door to each other since we was born .our other neighbours was a mum ,dad and 5 kids they all passed away in a car accident I should have also been the car but changed my mind at the last minute as I had fallen over and cut my knee ... I am 60 yrs old and I have never got over it the Dr put this down to my traumatic experience

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Yes - one of the theories around fibromyalgia is that the *fight or flight* response is continually *switched on* - this can lead to hypervigilence

Fibro1966 profile image
Fibro1966

Fibromyalgia can enhance certain human abilities such as heightened ability of hearing or sensitivity to sound or a heightened ability to smell.Not superhero stuff but just the curse of fibromyalgia.

All that is listed on your forum entry does definitely exist 100% as fibromyalgia totally messes with your central nervous system.

Fibromyalgia is not mentalness at all but if you were suffering from mental health issues before having fibromyalgia this curse of a decease is going to amplify all things 10 +

Kindest Regards

Seascapes31 profile image
Seascapes31

Hiya, thanks for posting, I can definitely relate!I will be looking this up with interest.

👍

Gigiruth profile image
Gigiruth

Hi TommygurlYes there is a known link between trauma and many systemic health conditions.

Even if we process trauma in thinking the body remembers.

The fight and flight system will also freeze if perceieved danger continues.

Useful information in Polyvagal theory and Window of tolerance ( how we stay in functioning.)

Thank you for posting ,

I hope you find things that help

Gigi

Southport-beach profile image
Southport-beach

Hi, yes, I tick all the boxes in the 2nd column and quite a few in the first....

My parents went through a very nasty divorce when I was a teenager. I was an only child so had no sibling support. The worst time was in my run up to my O Levels. When I was studying for my A Levels I had Glandular Fever. I think that combination started my problems. Several stressful jobs later, difficult step parents, then my Dad died 13 yrs ago. I then had major health problems when I was 47 (emergency hysterectomy, badly dislocated knee & gall bladder removal). To add to it all my dog was put to sleep in the same year from lung cancer. 8 years ago I lost my Mum to cancer & dementia & within a few months my marriage of 30 yrs fell apart and I found myself living on my own. That's when depression kicked in and my fibro symptoms really became a lot worse. With the support of my new partner I've managed to come out the other side of my depression but I do still lapse occasionally. Unfortunately my fibro symptoms haven't gone away neither has my tendency to match many of the behaviours on your list. Particularly the dependence on others. I am really fortunate that my partner of 6 years is still very supportive and has asked me to marry him. I'm hoping that, with his continuing help I can shake some of my behavioural issues.

My doctor suspects that the stress in my life, Glandular Fever (which I had really badly) and my Mum also being diagnosed with Fibromyalgia significantly increased my risk of developing it. Despite all this I am determined to think positively, look forward to my wedding day in June and to my married life in the sunny countryside of North Devon. Life definitely started properly again for me in my fifties!

Avalonia profile image
Avalonia in reply to Southport-beach

Bloody hell you have been through all. Like you ive let a life of stress, I like you my life got better in my fifties especially when I moved to rural Somerset with a very supportive partner. Despite being an ex prison officer ex doorman and immigration officer involved in busting crime gangs, I get panic attacks when I go into large cities especially London now.

Tisme72 profile image
Tisme72

Yeah, definitely relatable to, I do have periods of hypersensitivity to all sorts of things! This I think is probably more common than you think, I have constant muscle tension that has been very difficult to get used to and despite trying relaxants my body soon gets used to them and returns to its tense state - higher doses just escalate things so there’s no point in poisoning yourself and drumming up a dependency.

The current one, which is actually quite pleasant is Synesthesia - it’s possible that it’s associated with medication and fibromyalgia according to the doctor. I was listening to some of my normal music that I enjoy, closed my eyes and started seeing colours almost like the northern lights swirling around, it freaked me out so I phoned the doctors for an appointment. He said it would probably only be temporary but that was months ago now 😆. He said it’s probably something to do with a period of hypersensitivity which is fairly normal for me in the winter months.

So don’t rule anything out, if you have hypersensitivity you can have some pretty weird experiences!

Smilesalot profile image
Smilesalot

Hi sweetie Tommygurl🤗.I do identify with the hypervigilance etc and paranoia but I'm 're teaching myself to be less distressed and being more kind to others and myself😉😂😬🤗🤗.

You've had it bad Tommy gurl😍😉🤗🤗🤗🤗🤗🤗

Hugs sweetie Dawn 🤗

Avalonia profile image
Avalonia

Oh my God that is exactly me but I put it down to always having high tempo jobs like prison officer and immigration officer and being ex-military. Looking at those symptoms the vast majority are all mine

ArtfulLyricist profile image
ArtfulLyricist

Yes definitely, it can be a long standing consequence of an abusive or traumatic past and causes the sufferer to live in fight/ flight/ freeze mode 24/7. It's a very unpleasant condition and definitely causes long term physiological problems, as you are holding yourself tense and in dread all the time. It doesn't help mental health either as it perpetuates the negative side of things. A life spent constantly waiting for the other shoe to drop isn't much of a life; I completely empathise with you and hope we can find the route to recovery from this, but it's not easy at all.

Al10 profile image
Al10

I guess by being hyper-vigilant, we hope to avoid bad things happening like they did before? We hope to have control, when in reality we have to trust life to look after us. Bracing ourselves for the worst just ruins the present and the true is whatever life throws at us, we deal with it; Often surprisingly well? Trouble is Hypervigilance gets baked in to our core being. Quickly we are unaware of what we are doing and why. People like to call us anxious but it isn't that, not really. It's just a coping mechanism.

I've seen it loads in kids? And we don't just blame the kid as simply anxious do we? We look for trauma. Maybe just where they are overloaded?

I do think at some point we have to start asking ourselves some really difficult questions.

What are we fearing?

Why?

I wonder if it is easier sitting alone with paper and pen or a laptop and just scribbling? you don't have to explain or justify, just get to the nub of your feelings around stuff; Not judgement? Some of us need to go back years; decades. It's serious detective work. Clues and blind alleys.

I notice you have lost a lot of people early on that you were close to. That can leave all sorts of feelings and not always what you expect. Guilt is a big one. Responsibility. Weird what takes us over. Do these feelings still need acknowledgment and processing? Even if we can locate what we feel? Trauma can kinda leave us 'senseless' and only able to understand feelings in the physical? If you can't figure what you feel. how do you process? I do wonder if our pain is trying to get us to deal with stuff that we just don't know how to see?

Hypervigilance is close to the Autistic persona. They see light too bright, sounds too loud, etc too much sensory overload that they can't process, leading to the classic melt down. A lot of this is pretty painful for them hence coping is so difficult.

I think in all this muddle, we need to be able to ask ourselves those clear questions and sometimes, if we are brave, we do eventually unlock answers.

I think our body is a bit like a computer how it can store information/data/trauma. What we are trying to deal with is real. It is in our bodies and not our minds. However the trick of starting to unlock what is stored unwanted in the body, is through our minds; Asking questions? And then dealing sensitively with what comes up. The, the big question, can we let it all go?

I said for decades there was nothing and my family agreed. The Quacks were on the wrong track. Eventually, I discovered what had been bugging me and it had been hiding in my plain sight since I was 4 years old. It was so much a part of me, why would I even notice it? My family had no clue. It's taken ages to figure how to process but it has taught me so much. Professionals are clueless because they are not taught to look everywhere. They get hung up on symptoms mistaking those for the cause. Anxiety isn't a cause, it's a symptom! I'm sure I'm not the only fibro that gets piddled when that one is thrown at us. Might as well throw in how we are depressed too, while we are at it?

Your hypervigilance isn't the key but it's very likely a clue. Something set you off, to be that way. In order to survive, (something?) you created this coping mechanism. Why?

Before you answer 'I don't know', (like I did!) I'm going to be mean and tell you your body is literally screaming at you that it does. You just have to figure it out. What does it want to tell you? I don't want to make you sad or cry, but you might have to? Might need to?

And please don't judge your stuff as silly or any of those put downs we like to use to diminish our feelings so we can put them safely back in their box unexamined. If I told you my trigger, you could probably quite reasonably say stuff like. 'You twit! And it took you how many decades to figure? Jeeze!'If we spent longer you might eventually say, 'Oh. Blimey! You were really traumatised over that, weren't you? Oh no. Now I can see how YOU got from there to here.' We all take our own peculiar route.

The more I understand about my journey the more logical a condition fibro becomes. Twisted logic of course and complicated by so many things that happen just by living. Hard to see what is relevant and what is just random? Dunno if any of that makes sense. Hard to know how to put it into words.

Tisme72 profile image
Tisme72 in reply to Al10

Very eloquently put, yes I agree completely with your points, but I think that to that you have to consider that evidence suggests quite strongly that Fibro is down to a brain dysfunction, rather than a state of mind, in other words putting the chicken before the egg. The reason for a brain dysfunction can indeed be explained by a traumatic experience earlier in life. The result is/can be mental illness and a muddy state of mind. The big problem I see is that the medical profession would rather address the symptoms instead of the cause, regardless of what medication you take eventually your body overcomes its function and returns you back to what it sees your normal state to be. The only thing that helps me at all are my “Happy pills”, that said I do intend to try a more natural alternative (5 HTP) which essentially does the same thing. We are all individuals and don’t have the same issues, that’s what makes it so difficult to get decent treatment, if you’ve got a good GP / Physician hang on to them as best you can, they’re like Gold-dust!

emoor528 profile image
emoor528

yes I have this.

Bacaloca profile image
Bacaloca

Hi, yes, I relate to this too.

My fibro was put down to being triggered by the trauma of falling into the canal while pushing out a boat we lived on and coming up under a flat-bottomed narrowboat, struggling to get out, and my partner having to pull me out. I have suffered a lot of trauma in my life in one way or another, so this fits me perfectly.

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