fibromyalgia is in you head - Part two

[does-the-NHS-work]

Hang on - not literally!

You may know my first post had the above heading, it was a CLUE given to me by my GP.

My first post received a lot of interest, here is my follow up.

Well if you have Pain, I found this book "Healing Back Pain" amazing - written by Dr Sarno.

For my understanding PAIN is BRAIN.

TENSION MYOSITIS SYNDROME = TMS

TMS is the route to our evil in my opinion. Anger and fear primarily.

It took me a long time to get here - and it is not easy to shift but what you are looking for is the Paradigm shift and the KEY to that is YOUR ACCEPTANCE.

You can start your acceptance by making an "evidence sheet" this is not so easy at first but as you start, well, you wake at 5 in the morning and just cannot stop writing!

Well for me this has been profound knowledge. I hope it help you. For those who have identified past events or TRAUMA this is where you nervous system has been damaged by a past event, this helps to identify WHY you act like you do.

[desquinn Partner Volunteer FMAUK Trustee]

Glad you are finding something that works for you but again this is something that chimes with your outlook. Sarno's method has some proponents and some positive info but is TMS the same as fibro I think there could be a long discussion over that. Its not something I have seen referenced within the likes of Dan Clauw for example.

Trauma whether physical or emotional is one potential cause but trauma is a big word and a lot of focus is on ACEs and others focus on personal or psychological fragility. This is nuanced and complicated area. So it is great that your finding something that works for you but it may not work for others and most treatments in fibro land do not work for all and this is about the only consistent thing

There are plenty of life coaches and therapists that want to use NLP / CBT or other variations to help treat or provide therapy at a cost. Evidence base and regulation varies but people learning what works for them is great but just like taking supplements that you do not need it results in expensive pee or unintended consequences.

Especially in trauma where someone has complicated underlying abuse or issue, the wrong therapy can be harmful. This is why CBT is sometimes not available to people that are already receiving counselling.

[does-the-NHS-work in reply to desquinn]

Yes, good valid points for individuals to consider.

I agree Trauma can be a very sensitive issue, I would say my current treatments consultations have involved psychotherapy, hypnosis, Independent mental health assessment and EMDR and once I had these independent consultants look at me independently the evidence was clear.

I agree, to recommend anyone with past Trauma to seek proffessional medical help. ( I had no idea I had trauma, it was a shock to me) I believe I would not have found the paradigm shift had I not had professional intervention.

This help was paid Privately and sadly was not as a result of me bringing my concerns to my GP.

I think the label Fibromyalgia is in itself ambiguous, in as much the symptoms can vary considerably.

For me the Jury is still out on what condition I had/have and in the interest of some medics fibromyalgia fits somewhat.

What Is fundamental to my label of fibromyalgia is PAIN and Dr Sarno and his methods have great results for me or TMS, which he says is fibromyalgia.

Thanks for your comments.

[Gaballetto in reply to desquinn]

"most treatments in fibro land do not work for all" - doesn't this suggest that fibromyalgia syndrome is just what the name suggests - a syndrome of symptoms that can be caused by different underlying health problems in different people? Perhaps that is why we all have such different, yet uncannily similar experiences of FMS.

[desquinn Partner Volunteer FMAUK Trustee in reply to Gaballetto]

Well I would consider the work of Clauw and others that are looking at neuroimaging and other techniques that with for example pregabalin they could isolate through imaging which people it would work for in advance of them being prescribed (or which it would not work for). Also Efficacy rates in other conditions also have narrower rates or tail off profiles. Blood pressure meds or statins or even insulin for example will have to be iterated through until the correct one for the patient is found.

If drugs are not being targeted effectively then their efficacy scores will be less than stellar. As to it being a syndrome without a known underlying cause or being a constellation of symptoms that can be attributed to other underlying health problems, we are quite a bit further on than that.

We know more about what we do not know now and understand more about the mechanisms and groups of people and symptoms. In fact we are now perhaps at the stage that fibro may "collect" a few more conditions like IBS or vulvodynia rather than it being further stratified.

There is also a separation of core fibro symptoms, comorbid conditions, and other symptoms that are in our orbit. With this expanse of symptoms it makes conversations and research more complicated. However, focussing on core symptoms and looking at demographics it is easier to see the commonalities rather than the diverseness. Comparing apples with oranges is not going to end with good results.

[Gaballetto in reply to desquinn]

I remember reading, years ago, that a syndrome of symptoms very similar to FMS could be elicited in volunteer subjects by inducing sleep deprivation, and have noticed my own experiences of FMS symptoms are always worse when I know I have not slept well, and that they abate when I do get a 'good' sleep.

Since reading that, I have tried to concentrate my efforts in combatting FMS by getting good quality sleep, and it seems to work for me a lot of the time. In fact, the only times I wake up feeling refreshed and go on to have a good day are those when I feel like I have drugged myself to the eyeballs (by my standards). Unfortunately, this approach doesn't go well with my need to avoid medications as I have to resort to increased pain relief and the occasional dose of zolpidem to achieve good sleep when I am particularly sore or having weird symptoms.

It makes sense that many different and varied health conditions could lead to or worsen FMS by interfering with normal sleep patterns. Hence anything from a painful back injury to war-induced PTSD can cause FMS. I wonder if anyone is doing any studies/work on the relationship between sleep and FMS. Do you know?

[desquinn Partner Volunteer FMAUK Trustee in reply to Gaballetto]

there are many "vicious cycle" images that describe this. And medical approaches to fibro tend to attack pain and sleep or either of them with a view to helping the other.

PTSD and fibro are frequently discussed together and veterans for example have had higher incidences not only recently but after past conflicts as well.

There is research ongoing at present into looking at existing sleep treatments for fibro to make recommendations on the strength or weakness of their effectiveness.

Should have a meeting of the working group soon but do not expect results for at least 6 months.

pain and sleep vicious cycle

[bookish]

Dr Sarno gets a mention in Michaela Rose's book 'Recovery from Chronic Illness with mind-body medicine'. Worth a read, should you be so inclined. Glad you are finding things to help you. Cheers

[does-the-NHS-work]

Thank you. I will take a look at Michaela Rose's book.