Understand Trauma and Fibromyalgia - Fibromyalgia Acti...

Fibromyalgia Action UK

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Understand Trauma and Fibromyalgia

does-the-NHS-work profile image

For those of you who have started to work it out for yourself,

The best selling author of the book "The Body Keeps the Score": Mind, Brain and Body in the Transformation of Trauma will help you to make your own opinion of why you are a fibromyalgia sufferer.

By: Bessel A. van der Kolk

The Body Keeps the Score is the inspiring story of how a group of therapists and scientists— together with their courageous and memorable patients—has struggled to integrate recent advances in brain science, attachment research, and body awareness into treatments that can free trauma survivors from the tyranny of the past.

Chapter 4 will give you the first insight to how the brain works for and against the body.

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27 Replies
RWilliamson profile image
RWilliamson

I second reading the body keeps the score, such a helpful book and it mentions fibromyalgia a few times. I'm just starting Emdr which is a trauma processing therapy available on the NHS for PTSD which I'd also recommend for others (non invasive) Thanks for sharing

does-the-NHS-work profile image
does-the-NHS-work in reply to RWilliamson

Thank you too, it is such an inspiration and awakening to have finally found what I feel is my understanding to this syndrome, your experience is to me another endorsement to help me and other sufferers find peace. I too have and continue with EMDR amongst other therapies that have truly changed my life.

DazzleP profile image
DazzleP

I totally agree. I have read that book and a few by Gabor Mate which are similar. All about trauma causing physical illnesses. Everyone should read these if they want to improve their wellbeing.

NannyNooNoo profile image
NannyNooNoo

I saw a physio last week and she recommended listening to the below podcast (Ive never posted a link before, so 🤞🤞it opens!). It made such a lot of sense, and supports the trauma theory. I had, some time ago, started thinking back to various stressful/traumatic times in my past.

originalText

Ive now ordered his book (The Pain Free Mindset); I’ve made a timeline of my past stresses (eg sudden death of my mum, mother in law having long illness prior to death, death of a very young family member + other stuff I don’t want to go into here).

I’ve started regular visits to toning tables, in addition to walking and playing bowls, in an effort to move my joints better.

I’m determined to do as much as I can to improve the way I feel.

Dizzytwo profile image
DizzytwoModerator in reply to NannyNooNoo

Hi, please may I remind you about our rules on posting links below thank you.

8. Do not solicit members to other websites or forums for your own purposes, either through posts or private messages. You may discuss your blog or vlog only if it is related to Fibromyalgia as a helpful resource but you must NOT post a link.You can however invite members to private message you for the further information.

NannyNooNoo profile image
NannyNooNoo in reply to Dizzytwo

I’m sorry - I found it an interesting & helpful podcast & didn’t think it through when I shared

Dizzytwo profile image
DizzytwoModerator in reply to NannyNooNoo

Hi there no worries. At least you didn't shoot the messenger lol.

I hope you have a lovely weekend 🤗

Momo

does-the-NHS-work profile image
does-the-NHS-work in reply to NannyNooNoo

Hi NannyNooNoo, I would be interested in your podcast if you could send to me privately. Many thanks.

NannyNooNoo profile image
NannyNooNoo in reply to does-the-NHS-work

I’m happy to do that - once I work out how lol 😂😂

does-the-NHS-work profile image
does-the-NHS-work in reply to NannyNooNoo

So refreshing and enlightening to read your journey, (all but not easy to accept, I see) to see you started to identify your "triggers" and where this has led you to today.

For me acceptance was the very essence, when I began to except or for a better term understand WHY my recovery journey began.

Carlt profile image
Carlt

It's quite intriguing the split on this site between those who take great offence at being told that their fibro pain is all in the mind and others selling methods of therapy that assume it is all in the mind.

It may well be somewhere between the two but I think that untested pseudoscience should be clearly labelled.

happytulip profile image
happytulip in reply to Carlt

In my opinion it's not a case of it being "all in the mind," to me it's a case of the body and mind sustaing so much trauma in the past that it has affected a person's physical health, in this case the nervous system.

There are any papers written about people having an higher incidence of trauma in childhood who go on to develop auto-immune diseases such as ulcerative colitis, Crohn's, lupus, etc. It doesn't mean that everyone with an AI disease has suffered trauma but there is a known link. So I can quite believe that stressful events, be they physical or emotional, over a long period of time can highten the nervous system resulting in Fibro.

That's my view anyway. I'd be interested to hear other peoples views. The mind is a very powerful thing, but that doesn't mean the pain isn't real.

Carlt profile image
Carlt in reply to happytulip

I don't disagree that for some it may well be trauma related.

I was just remarking on the contrasting opinions.

Personally I feel like I have had a pretty trauma free life and to blame my condition on past events would be grossly disrespectful to those who have suffered real trauma and health issues.

NannyNooNoo profile image
NannyNooNoo in reply to happytulip

That’s the view I have been coming to for a long time; I’ve spent quite a considerable amount of time trying to find a way for me to start managing things for myself. I’ve started to read the book mentioned in my original post and it’s making so much sense for me. I’ve previously had counselling to work through some of my emotional traumas, which helped; I’ve tried various meds for fibro and GP doesn’t want me to try more as I seem to react to them! So, for me, I believe self management is the way forward.

NannyNooNoo profile image
NannyNooNoo in reply to Carlt

Just to clarify, I wasn’t trying to ‘sell’ anything - merely sharing what I feel may help some people. I’m a great believer that ‘one size doesn’t fit all’, and happy to be open minded enough to look at various options.

Carlt profile image
Carlt in reply to NannyNooNoo

Just to clarify. I wasn't directing my comments at you and I apologise if that was the impression I gave.

I read your post as you offering an insight into your personal experience which is a large part of what this website is about.

NannyNooNoo profile image
NannyNooNoo in reply to Carlt

Thankyou, much appreciated 😃😃

does-the-NHS-work profile image
does-the-NHS-work in reply to Carlt

A valid point. The issue I find with any diagnosis and sadly I have experienced misdiagnosis is that you may not have fibromyalgia at all. (not relating that to you) but I and people I know have had misdiagnosis with several different conditions that quite frankly are similar.

For me I was given the fibromyalgia label (syndrome) and I use this term lightly as it is evident even on this forum that fibromyalgia is greatly misunderstood Or misdiagnosed - who knows?

For me, I feel kind of lucky that I started to notice triggers, that set off physical, emotional symptoms, reactions in the body, in particular Pain, as I received treatment (therapy) basically an understanding of what is in my head, what is driving me to behave the way I have for years in certain circumstances, it all made a lot of sense to me. Now I may not have fibromyalgia, I have widespread pain, chronic fatigue, depression, anxiety and trauma.

I came about my recovery by having hypnotherapy, psychotherapy, different professional's Not all NHS some private and they all came to the same conclusion.

The important message I wish to share is go and get some help, because I could never have done this on my own, the antidepressants were ruining my life and my life was a disaster.

It is not now - so reading this if anyone wants to get better - my advise is seek help, my GP never referred me for psychotherapy, I had to ask, the first time they gave me a mental health assessment I was shocked, I was off the scale

The other thing, very important thing is I thought and would never admit to having experienced childhood trauma, I lived and was given everything, the common thing with Truama is denial, and for the life of me it took ages to accept.

Carlt profile image
Carlt in reply to does-the-NHS-work

I am fairly confident that I am not in denial (but how could I know for sure?).

I do, however think that many of the methods employed to deal with pain can be effective, whatever the cause of the pain whether known or unknown, acute or chronic and often more effective than "off the shelf" prescriptions.

My GP referred me for a mental health assessment fairly quickly as I am more than happy to accept that it was all in my mind, if it meant I could be treated.

Unfortunately the psychiatrist was clearly incompetent as he said that I was completely sane.

I have been very lucky in having had a GP who has been very sympathetic and happy to refer me all over the place.

does-the-NHS-work profile image
does-the-NHS-work in reply to Carlt

You seem to have it all sewn up, well done you.

I think this is important to feel you are doing your best, it provides you with the assurance everything has been looked at and what is - is!

For me I knew something was a drift, I had no idea it was mental illness, I said to my GP at one of the many, many, many what I can only describe now as a complete waste of her time and mine and public money - "I feel my illness has something else involved here that I do not understand, She said "what do you think it is? well that filled me with no confidence at all, I am no medical professional. But It also gave me the answer I was wasting time here and looked for private professional intervention. (that was my saviour to understand)

I started to learn mental health is a major contributor to not only fibromyalgia individuals but for many symptoms and conditions, I started to look further, after all the computer that regulates and controls the body is the brain.

Why are fibromyalgia individuals prescribed antidepressants? Here again I could see the link to the mind and brain. But what is wrong with my brain or mind I thought, why is it reacting this way, well that is easy FEAR.

After I discovered the links between depression and Pain I asked my doctor, O' yes she said a direct link with pain and mental health.

I said to her is fibromyalgia mental health, she said no, but it has a lot to do with it.

Wish I could have understood this before, I would have started to recover years back.😒

Carlt profile image
Carlt in reply to does-the-NHS-work

Mmmm.

I'm still in pain and you're not.

I'm not so sure I'm the one who has it sewn up.

I've learned to live with the pain and accept the limitations it imposes but I'd rather it was gone altogether.

I think that fibro is caused by many different things and, possibly for some folk, none at all.

I also think that different therapies will help different people and until all GPs have attitudes like mine, folk won't find the right one.

I'm still looking but, until the right therapy comes along, my TENS machine and stoicism gets me by.

Midori profile image
Midori in reply to does-the-NHS-work

It can be difficult to diagnose, when there is so much overlap with ME/CFS and MS. Took nearly 20 years to diagnose me, because Fibro was still not understood at the time.

Had plenty of trauma, between a violent husband, and him suiciding when he was told i was divorcing him.

I do find that younger doctors are more aware of Fibro nowadays.

cheers,Midori

Hi there

May I suggest noting (perhaps in the title) that this post could potentially be triggering for some people dealing with traumatic experiences?

I know from research that one of the known triggers of fibro can be trauma, and I congratulate you for finding solace and acceptance via this route - I know that it is not an easy journey, so well done 🥰

But there may well be people who are not at this point in their journey, who may struggle with the idea of opening that Pandora’s box just yet.

💙

does-the-NHS-work profile image
does-the-NHS-work in reply to PenelopeClearwater

I take your point. But.. This forum is about information, it is about sharing other individuals experience, with an open mind, to approach everything we see as if the first time, without judgement, It is the way we look at things that stops us moving forward.

For me it was not easy to accept what affected my nervous system, (it is the sympathetic Nervous system) once this is affected it is almost like a scare that is left after an physical injury, once I understood this (believe me my head is wooden, it took time) this was the key to my success in my opinion. I began to heal.

If something is troubling any of us, there are extremely helpful professional people who understand how to handle Trauma, and after all Trauma is a broad word the very nature of the word for me was dramatic, but in essence it is about something that was Traumatic, a spider is traumatic to some, to understand why the spider was traumatic to you is the paradigm shift the key to make sense of events.

The important message is seek help, proffessional help, from trained individuals, there are many, don't be put off by a therapist you cannot relate to, there are many, I for one stopped at the first therapist, they just did not connect with me, I took the next step, researched the therapist (private) she was the one person that changed my life.

I cannot tell you how many years of misery I had, locked in my head that I had no idea how or why it affected me, now I am at peace with the who thing, my pain is controllable, my fatigue is greatly reduced my depression and anxiety score has started to reduce, my medication is at its lowest.

Remember we all have a choice, make yours carefully.

PenelopeClearwater profile image
PenelopeClearwater in reply to does-the-NHS-work

It was your choice to address your personal issues. And as I said, I congratulate you for being able to to that.

However, it is important to be mindful and respectful of everybody’s journey. If someone is unable to address their own past at this stage, there is absolutely no shame in that. It can therefore be detrimental to someone’s health to post without at least adding a trigger warning.

It can also cause extreme distress to some people to keep telling them to seek help if they are not ready to do so. Trauma is different for everyone, it presents differently, and can be handled in any way that the individual chooses.

I’m not saying your way is wrong, but it is important to bear in mind that yours is not the only right way.

I am certainly not trying to censor you, or belittle what you have been through. I am simply saying that some people may not find this sort of thing helpful and therefore it is courteous to put a trigger warning on posts that may be contentious.

does-the-NHS-work profile image
does-the-NHS-work in reply to PenelopeClearwater

I feel no judgement from you towards me, I wish you well and happiness Penelope.

PenelopeClearwater profile image
PenelopeClearwater in reply to does-the-NHS-work

Incidentally, I most certainly have made my own choices carefully - in medical interventions, psychological assistance (for the last 20 years), and in the language I use.

It is not for you or anyone on this forum, or in any other arena, to advise or judge people on how they make their own choices.

I am not a moderator, but I believe one of the guidelines for communication in this group is to treat everyone with courtesy, dignity, and respect - irrespective of whether our opinions and approaches align. I am aware from previous posts that you like to illicit discussions regarding fibromyalgia; and there is certainly a lot to be said for those discussions, but there is a big difference between discussing and arguing.

Lastly, although trauma has a place in discussions regarding fibromyalgia, it may be worth joining a group specific to trauma in order to have conversations that are more pertinent to the audience.

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