I need to vent this stupid book

I went to the rehab doctor on Friday … she said a lot of things that made sense… she wants me to first start with my psychologist (I’m staying 17th of august btw :grin:) before starting there… because i need to be able to read my body’s signals and without being able to read my own emotions that’s pretty much useless…

But she gave me this book to read… and is so incredibly frustrating to read! It actually told me to use a rubber band on my thumb to learn what acute pain is!!! Wtf! This whole book is written by someone who is incredibly frustrated by other people not knowing how pain works… and at this point I looked at the names on the front of the book… My rehab doctor is on the cover! Of course she thinks this book is awesome… Of course she didn’t asses wether i already knew everything in here after a whole life in pain!

I’m sorry but I’ll be coming back here to tell at this stupid book just so I can get through it… I know they mean well and just want to help clarify how pain works because that helps a lot… and she couldn’t know I already read all about how pain works because when she talked all I could do was cry she couldn’t read my mind which part I already knew and that it was just the fact that she said fibromyalgia is a disease of using more energy then you have constantly and that if you think you’re lazy you’re most definitely not lazy… That had me crying… which also wasn’t new information but most definitely makes me cry whenever it comes up…

So please take everything I say here with a grain of salt! But if I don’t vent here I won’t be able to keep my mouth shut to her face…

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It doesn’t help that constantly reading about pain is causing mind to spike… I have pain in my back that I didn’t have before… is in the place of my right kidney… When I stop reading for a bit it gets much less and then I go back and it hurts again… I already believe pain can be turned on by just thinking no need to proof it to me…

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Pfffffff right now they are talking about chronic pain like it’s always “fake” (as in there’s no actual harm to the body anymore) one of the pillars of getting better is realising that the pain isn’t caused by actual damage… how do I translate that to there is damage but not as much as your brain thinks there is…

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So… I finished the book… I can rewrite this into a 3 page handout which would give just as much information… But I got through it!

The practical thing they say do sound good though… the last 2 chapters…

One was slowly building up movement… but not the way I do it (doing as much and as heavy as I can with trying to not overdo it…) but much slower and steadier and building up even if the pain or other symptoms are bad, pushing through them to build up endurance… it feels counterintuitive to how I feel it works for me… but maybe that’s the difference between the actual pain and the fake pain… (fake as in there’s no tissue damage or danger of damage) (it’s not the pain that’s fake it’s the cause of the pain that is fake)

The second was taking 15-20 minute breaks lying down… not necessarily sleeping but resting… this is to build up the energy reserve… every how many minutes you need to do that is counted by measuring how long you can stand, sit and walk in 1 go for 7 days, then adding the amounts per day and get the average amount of minutes. I can walk 8-10 minutes, stand 5-10 and sit 30? Minutes(depends how much I’m allowed to move around in my seat) so my number would be about 45 minutes… Which would mean I would need to lay down for 15 minutes every hour… And in between make sure I don’t overdo the walking sitting and standing…

I get that this would help… but it’s not really doable… especially the part where your not allowed to look at a screen… They do allow an audiobook… but still… maybe I could do every 2 hours… and for now skip the work hours… but it already feels like a drag…

Or just not do any of it yet… I was supposed to read this book before September 1st when I go to the information morning about the rehab… after that talk about it with my psychologist and then go back to the rehab doc and talk about an actual plan… (where the rehab psych talks to my psych and everyone gets involved)

Do I want to go too fast by already doing some of this?.. is already doing a little damaging my chances?

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Well, that sounds like a book written by someone who has never had widespread severe pain, but who has good intentions. You are not going to shoot your mouth off at her because there is no point. It will just reduce your chances of getting real support from her.

Why wouldn’t you try some of the techniques immediately? I think it sounds like there are some really good suggestions in there, even if they are very hard for anyone with a job and/or a family to carry out. Still, might be worth a try. Who knows!

I like your response to the book (even if the book doesn’t sound like it’s very realistic) because it means that you are giving what it says serious consideration. That has to be good.

Onward and upward!

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Yeah that’s why I was venting here… it had to go somewhere…

There’s a difference between writing a book for people who are not knowledgeable in the subject and writing it to someone you think is stupid… they did the last… the annoyance with people who don’t know about their passion as much as they do seeps through…

it’s not my fault everyone describes a hernia as a disc that pushes outside where it should be into a nerve and then that’s what I think it is… instead of it breaking and stuff leaking out of the actual disc… that there’s no risk of the disc actually dislocating…

Is the book specifically for people with pain from fibromyalgia? The pain of fibro seems to me especially confusing because the disease does no damage (as far as I know).

I can imagine getting extremely frustrated with such a book. There again, at the moment I’m spending a great deal of time trying to work out how best to do things while minimising pain and fatigue. Increasingly (though by teeny-weeny baby steps) I’m learning that there are times when I need to ‘give in’ if circumstances allow. I’m constantly doing this cost / benefit analysis: if I ‘give in’ now, will it pay off? Or will it just be more of me lost to this disease? Also, ‘do I really need to slow down / stop / do whatever it is differently or am I just a big wuss?’

Like you, after I’d thrown the book at a wall I’d take a look. For some of us, learning how to live with this disease (and its stupid friends e.g. fibro) takes a life time, anything that might just speed things up a tad would be welcome. I think you’ll very likely find a few useful snippets and perhaps modify them. Food for thought, though.

She said fibromyalgia is a disease of pushing through when you don’t have the energy to… and then again and again for years and years… and when you deplete your energy reserves you get things like pain and all the other stuff associated with fibromyalgia…

This book is for people who have brains that keep sending out pain while there is no tissue damage or danger of damage… so any chronic pain where they can’t find a cause…

The whole book as based around if you think your pain is from something that will kill you it will hurt a lot more then when you know there’s nothing actually there your brain just sends you pain messages anyway… It’s not saying the pain isn’t real… they keep repeating that the pain is real but the cause isn’t…

I have always thought that pain that obviously signals ‘danger!’ is much worse than that which doesn’t. Second time I’ve mentioned childbirth recently even though it’s ancient history for me. But for me the third time around, when everything went like clockwork, was virtually pain free. I knew what was happening, no interventions were required and all I could feel was pressure of various sorts. Even so, part of the ease of it all was that it was very obviously time limited! By contrast, relentless pain is extremely wearing and a real downer.

I would think that getting an angle on fibro pain is a long-term process but might well help little by little.