As part of my recovery - It took me for ever to see the association between my FEAR and my symptoms primarily THE PAIN.
Conceptualising was my most difficult when - listening to my therapist I had three different consultants I understood what they said - It just did not make sense?
It was not until I could fully understand my behaviour, my actions and what was driving this all before I could I understand the whole picture. You are kind of locked into a negative spiral of events.
Some of you may think what the hell is he going on about!
Well fibromyalgia for some specialist Highly qualified Professional human beings i.e. specialist doctors believe fibromyalgia is TMS and have treated individuals with fibromyalgia with astonishing results, life changing results.
Cut to the chase here - FEAR AND ANGER are deeply buried in you and this is what drives you to behave.
Here is something that may interest you an abstract from Alan Gordon's Pain Programme.
Again there may be some merit to this but a number of questions and points.
* speaking as if this applies to all
* as if it is fact and again applies to all although you are using some conditional language
* TMS applies to chronic pain but more centred around that which is from back pain. Is there a distinction between chronic pain from an acute cause as opposed to more generalised chronic pain.
* Find the suggestion that fibro is TMS insulting
* Evidence quality is not great but some shared precepts are founded on good evidence and should be harm free unless you have a pre-existing MH issue
* proponents have an inherent bias to be catered for as they are paid therapists
* Many will not have fear or anger sources that drive their behaviour or chronic pain. Not all people with fibro either had pre existing anxiety and a lot do not have a post condition anxiety.
It really concerns me the many "programs" that are developed by people who are earning a living off of it that do not have good evidence base or an independent evidence base. It is cynical I know but I have seen far too many patients hop from one program to another or product to product and they descend in economic fortune or spend money that could help with their quality of life better. Hope of a better life can drive a lot of people to spend money without critical thinking and without gain in health.
We are constantly contacted by counsellors, therapists or manufacturers with the next cure or revolutionary treatment from cherries to heat lamps to brain electrodes. So I have evolved to be a much more cynical person than pre fibro and I do fear for people that are taken in by charlatans and have a healthy dose of anger too.
I am glad you are finding something that resonates with you as your journey has progressed over a similar time period to my own. However your journey on here over the last 4 months to come to this conclusion or epiphany is perhaps a bit too short to base any weight on your conclusion just yet and perhaps this treatment is in a honeymoon period but I hope that it lasts for you. But if as I have asked you directly before, have a stake in the suggestions that you are putting forward then that certainly colours you input.
The above is meant as congenially as possible and meant to encourage discussion.
You need to first understand I was diagnosed with fibromyalgia? Once you have this label by your GP this is how you will be treated or ignored as you may feel.
THE IMPORTANT MESSAGE HERE IS NOT TO JUDGE - JUDGEMENT IS YOUR DEMON.
As with all health conditions it is important, in fact most important to have an open mind to everything - ESPECIALLY IF A PROFESSINAL DOCTOR SUCH AS DR SARNO feels fibromyalgia is TMS. He is not better or no worse than your GP, rheumatologist or any other professional.
What Dr Sarno has indicate is he has treated an enormous amount of individuals, so for those on here please take a look at this and for those fortunate enough as me, you will find astonishing results.
Des, You are a sceptic and your message to others is damaging there chances of recovery, don't you see your very words of money making individuals is clearly wrong.
Des, when you commented on RTT as if it were witch craft, again this is not the message you need to send it is too personal and vindictive to the suffering individual on here, i will sent my concerns to fibromyalgia UK and ask them to view your feedback, as in my opinion you are damaging the very people you think you can help
"Des, when you commented on RTT as if it were witch craft"
I suspect you are referring to my comment on this post and I think if you review you may find your recollection incorrect and also your assessment of it was also wrong.
fmauk.org/policy has our complaints policy and you can contact head.office@fmauk.org with any feedback. But please be aware I am monitoring this mailbox for the next week due to annual leave cover.
In relation to the other points above I am sure you are aware Dr Sarno has passed away and there is a substantial discussion about the merits of his program and its efficacy. Any treatment for any medical condition should be evidence based and if it is unlikely to cause any physical or mental harm then it can be tried with very little restriction except that people should be aware of the evidence base and consult with their own health professional first so they are aware.
Again, I have tried to communicate with you directly and privately, and shared the concern(which you have not addressed) that your position and information was actually advocating a treatment that you were perhaps delivering or promoting for gain. However, your approach suggests that you are searching for answers and over a relatively short space of time (on here) have found them.
I have not been vindictive and perhaps been more passive in response to your requests such as leaving posts for others to comment when I would have otherwise engaged. I have not engaged in personal attacks and would have had more of this conversation in private if you had engaged. I do believe you have laid claims at my door like the one above and responded in a manner from time to time that is not in keeping with the groups rule but I tend to let some of that slide to allow conversation and rebuttal to happen.
My initial response to this post above was specific to TMS and your post AND latterly some general points about how bias and treatments can be concerning. I do not apologise for being concerned for questioning the quality of information and the practices of those advocating treatments or programs for individuals on a support group that I feel responsible and accountable for.
If you personally think you can reduce your condition to TMS, then why don't you try the procedure first? It won't fit for hardly any of us real fibromites, though, which you perhaps then aren't, so you'd be an exception. It'd be nice of you to write it more like that. I think "some specialist Highly qualified Professional human beings" implies this is the new truth, with an inappropriate attention-grabbing touch.
I myself have "strange" treatments that work for me, and have worked for a few others I know have tried them, but these like yours aren't the big new thing, they are suggestions I can bashfully make as an aside when asked for ideas. Also I've thoroughly tested them. I also realize I can't know whether it will help others or it's just that they're not really trying. But if they aren't trying, preaching won't help, quite the opposite.
That said, regarding your first line about the connection between your fear and your pain: The overall severe Ache I now get from overdoing it = pain, feels pretty much the same as the Ache I got after a social phobic situation for 2-8 hours = fear. However this may easily be "a false friend". Especially as I got my social phobia almost completely under control long before fibro. Also, the connection doesn't help me: I learnt to greatly reduce the phobic Ache by facing it, whereas that doesn't help my fibro Ache at all. The only analogue thing that helps is prevention using mindfulness, now body, not mental.
Still, fear may be causing a part of your pain, not ours. Essentially it may start getting more interesting to us if you start talking about how your results are going, not your ideas....
One there are many on here with scepticism as to what their condition is, me one of them and believe me wrong diagnosis from a General Practitioner is rife, to put it mildly.
Secondly having the Label of fibromyalgia is not helpful to anyone, excluding yourself from this story is the message, It is beneficial to others who like me may have the benefit to recover from PAIN I am thankful and incredibly lucky to have the time, money and ability to have found my recovery, I hope this will help others to seek some guidance on what really is affecting them.
The problem when Individuals arrive here on this forum is that they too try to fit the brief on this mysterious syndrome - yet in reality it may be nothing to do with them at all.
Ah, so you're targeting people looking for other diagnostic possibilities, now I get it, it didn't sound like it before! I think that'll be more a minority here, though, probably impossible to find out, as they may be reading but not writing. But not a minority to be underestimated, agreed. To avoid misunderstanding with the majority / old hands who are sure of their diagnosis, it'll probably be helpful to lead in with "for those unsure of their diagnosis it may pay to look at this connection...".
I myself did look at all connections/possibilities like this for other or additional diagnostic possibilities and more help myself and I only use the label of fibromyalgia to find new ideas for treatments, so in those senses I fully agree here. What's again helpful is to tone posts down so that everyone can feel included and understood.
JayCeon - I know you know this ..... Mental state can definitely affect the level of pain, the frequency of it and the onset of it. Plenty of studies on this
The construction worker with the nail in the boot or Prof Moseley's tail of being bitten by a snake are two very good examples. And like perhaps TMS or more conventionally CBT or ACT could help with triggers or strategies.
I agree with your comments about preaching but just like I know some of your personal treatment choices and glad they are working for you I think the OP is missing the difference between "I am trying these", "This works for me", and statements like "you must do this", or "the NHS are all wrong but these other doctors are right."
Personal choices are different than advocating for others to change their health plans. When there is a potential benefit to the person advocating then critical thinking suggests that you should question premise more critically.
Hi, now dont get shocked lol But I totally understand where your coming from with the phobic pain and the fibro pain.
I start indepth therapy in two weeks time. I too have suffered for ever been round people. I also just finished a 5 month CBT program. And I learnt a lot from it. Also learnt I needed more in depth help.
But I do know and definitely feel the diffrence between the mental pain and the physical fibro pain.
I only manage to read a little of the link that was posted. But what I did read sounded a lot like the CBT I had been working on.
I think its good that people start to look towards their own wellbeing. But we should remeber too just because I may find/ stumble on something I feel benifits me I do think it could be dangerous to advocate to others unless asked.
It is good to share what we find is helping us personaly. But thats just it. It's helping me and that should be made clear through out IMO 😊
A lot of people dismiss talking therapies unfortunately and perhaps only consider one therapist and form a negative opinion after "it not working". But as a wise person said you will go to several shoe shops and try on 15 pairs before settling on the pair you want on comfort, style and price. A therapist should have the same amount of consideration at least and the therapy should be given multiple chances to see if it works for you.
I think people need to be in the right place sometimes to talk on talking therapies and only wish people would try them sooner rather than later. They are not for everyone but can help and glad you are benefiting from it.
Des, I so agree. I have tried CBT on other occasions and always found the therapist wanting. Never doubted the principle of CBT its self.
I was offered the indepth therapy along with EMDR but for me the EMDR was a not for me right now. But maybe something to consider for the future.
For me its always what may or may not work for me personally and till I've give it a try I will never know.
I have opted for zoom meetings with my therapist. Looking forward to the day we can meet in person.
Thats another thing there is always options on how to have appointments. Which I think is good.
I also had my first befriending phone call this week which I found easy to do. Finding a service for my age group was not easy. I was told I was too young 🤣 66 this month. But age UK found me a program for my age group.
So yes I would definitely advocate taking your own wellbeing in your own hands and check out what helps available to you. If thats the route you wish to go down 👍
I have little to no fear. I don't fear my pain. Long ago I got my anxiety under control. You may say that I'm unaware of my dear, but I've spent years analysing myself and coming to terms with what's wrong with me, so I'd argue I'm aware of what is happening to me. Yet my pain increases notibly on a yearly basis, sometimes 2-3 times a year. I agree, fear and anxiety can manifest as pain. It happens to my daughter, but I've been down that route and the pain still increases. However, I think it's important that everyone on here shares their ideas. Just because it didn't work for me, someone might read this and try to reduce the fear and anxiety in their life. Even if it doesn't alter pain, it's a better way of living.
Hi Jacksono - not sure if you're answering me or the OP, but just want to say that I fully agree with you and feel exactly the same. Only that my pain & fatigue mainly increase due to sometimes overdoing it (this week an hour trip to an allergist and 3h there), but praps like you I can very precisely identify my triggers because I track and analyze everything in detail on my blog.
To comment on yr chosen username: 'N⛔, . . . I feel v sure the NHS does n⛔t work ( - at all well in preventing, correctly diagnosing . . . & effectively treating MANY conditions !) ! Just ONE main reason why the UK may be regarded as the FATTEST ( - & prob unhealthiest ?!) nation in Europe ! We may be on the same page there ?!!
Also agree with yr view in the main on the issues caused by ( - often deep-rooted) fear & anger . . . which may, & can become worse with the effects of many a chronic illness: worth understanding, . . . & SOOTHING effectively as far as practical, . . . it wld seem ! 😑 🙏 😑 We didn't need Mstr Yoda to understand that, . . . did we ??❓❗ 😉 🙏 😑
As to the NHS working I would disagree and think it works well for many but at this moment in time particularly it could do better ..... (perhaps with some outside help / funding).
But as to the UK being the Fattest in Europe we have 8 countries ahead of that are worse but more importantly I do not think you can lay that at the door of the NHS unless they should be doing more compulsory bariatric surgeries
I had not heard of TMS before so did a search, found the questionnaire and answered it honestly. I scored highly for NOT having TMS so would conclude that my fibromyalgia diagnosis has not arisen from this. In my case, and I have been told this by my NHS consultant, it arose from exposure to the EBV virus that landed me in hospital originally and latterly my diagnosis of hyper mobility syndrome. I guess what I’m saying here is that there appears to be myriad causative effects for fibromyalgia. I do agree that there is a deep interaction between body and mind however. My personal experience is that daily meditation and yoga reduces my pain and truly listening to what my body is telling me helps me to pace myself and deal with any flare ups. Regarding ‘does the NHS work?’, I think evidence preceding its inception would suggest it does. But I think, as individuals, we need to take some responsibility for ourselves too in terms of preventative measures to reduce the risk of other health problems😊
Yep! I would add that Fear has been the chief tool in raising children since time began and still parents get locked in to this and a generalised 'we' continue to transmit the same conditioning down the line. - In some countries where people live with fewer barriers between them and wild animals this may still be quite important. ie the old adage of being cruel to be kind. - Now, I feel that the news media have taken over this mantle unnecessarily. That includes film makers but in your Matrix assessment, this has a positive slant. (Thanks she adds with gritted teeth - I shall have to watch it again now!!!) ... but my son will enjoy that too. - - I feel there is something more to be added to the TMS thing - There is the well known 3am waking nightmare phase where people repeatedly process traumas. Therapies have also been around for centuries in different forms. - It would be really interesting, although impossible probably to know if any classic, ongoing fibro condition exists in one of those ancient Amazon communities that really has had no contact with civilisation ... (probably all killed off there now anyway) but my point is that Modern Media must be reinforcing our deep fears and people are amazingly able to pick up suggestions and tells from others behaviour and that is constantly with us and developmentally, particularly noticeable in five year olds in school which is an age of increased aggression. - I am sure there is much in this TMS approach which could be useful towards building a better picture of all the interactions that have sparked off the fibroflood in this world, but I very much suspect we are also being physically poisoned by the modern form of lives we lead as well as infected by parasites. Has this latter aspect crossed your mind at all? They are very interesting you know (another section of being in the matrix???) though part of me doesn't really want to know that much about them at all but we probably have to go there if our human race wants to survive.
Yes I am working on this side of things and have curable app and am in the tell me about your pain facebook page, and read The Way Out amongst other books
I think working on the secondary suffering of distress anger and fear after a diagnosis, does help managing health issues. It may help to build tolerance of when there is lower level pain/disability and and also help to look at how to manage having a life, and working around 'practical' problems of illness. Like the Accept CBT. But with more emphasis on dealing with the reality, than accepting and giving up.
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