Body reprogramming/ new treatment... ... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Body reprogramming/ new treatment... rubbish or good?

Nogginthenoo
Nogginthenoo

Hello new to the site, I have been diagnosed with fm for around twelve years and ever since then it’s been a battle to get any doctors to take anything that i have said seriously, or they wish to repeat everything that I all ready know over and over. Now there are these new rules they are trying to implement with the pain killer due there over prescribing in the first place, which I have always said I don’t care if you want to take me off something but I’m not going to be left in so much pain that I can’t live anymore.... which is going in one ear and out the other right now when I talk to them.

Anyway the nhs is now putting a program in place allied the body reprogramming course which comes with a large booklet that you have to read, I have read through this booklet and it made me feel so down and depressed at how it was written. I would love to hear anyone else opinions on it, so I could discuss this with other suffers, if you haven read it, just type in body reprogramming to google and it will bring it up where you can down load it. Thank you noggin the noo

11 Replies
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YASMINTINA
YASMINTINAFMA UK Volunteer

Yes indeed, we need to find something that at least helps with continued pain, trial and error I read here with most of us finding something that’s suits . I find chatting here to each other beneficial as like you say reading information can make you feel ☹️, xx

Hi there, nice to meet you and welcome to our group :) I had never heard of this program before. I just downloaded it and read the first few pages. I have had Fibro for over 30years and have read many of the do's and don't that they talk about. But I'm looking forward to sitting down to read all of it later. I really like what I've read so far. It is very easy to understand and follow and definitely not in your face type of instruction.

You say it makes you feel depressed. May I ask why? I personally find it very encouraging and easy to follow. And after 30 years of struggle and doing most of the things they advocate it seems like nothing but commonsense. But I'm sure we all feel and see things differently and that's good too. It would be pretty boring if we were all the same wouldn't it :)

Thank you for posting this and I'm sure you'll love been part of this very friendly group. I hope you have a pleasant weekend xx

Momo

Hi Nogginthenoo,

(love your user name!)

I am replying to you, as I have suffered with similar symptoms, for... I would say 10 years or more now.

I have have had every test under the sun, blood tests, x-rays, MRI scans. I've tried a few drugs, although I am not one for taking anything. The constant pain makes me feel nauseous sometimes, so I take the odd pill for that. And sometimes I panic about the pain, so I take the odd 2mg diazepam for that. I sometimes wake in the night with terrible buzzing feelings in my shoulders and arms, and I clench my jaw a lot. I suffer with a sensitive stomach and I swallow a lot of air, something they call aerophagia, look that one up as it can give you weird and wonderful symptoms! 😊

I dound in a right state and I was.... I still suffer, sometimes badly, sometimes have great days. But I am living with it now as doc said there is nothing more to be done and like you gave me the diagnosis of fibromyalgia. I'm not saying this isn't a real thing, but I do worry that they don't know, and I know a lot of people suffer badly with it.

I came across something called "Tension Myositus Syndrome" put this in Google and have a read. I do believe fibromyalgia is a similar condition. Basically they say that it is muscle tension and pain brought on by what they call "A brain under siege!" That pretty much means, you are aching through stress, through unresolved issues in your life, for instance I have had so much emotional pain for the past twenty years, I've had to cope and because I have coped so long I now can't cry, I wish I could as I think it would get it all out of me and I would feel so much better. Inside I am sad about things, angry, all sorts of emotions. Amd even before I came across tms, I believed this was why I ached and pained so much.

Please don't get me wrong I do understand and realise there is real physical pain out there, but for me I feel its my pent up emotions that I can't let go of and they have to manifest somewhere if you don't let go.

Having said all this it's not all gone away, but I have managed to cope. I don't go to the doctors any more. I have been working on my thinking, worrying and panicking and I would say I'm 80% there.

Not sure I'll ever be over it all, it's the kind of personality I am.

Hope this has helped you a little, I know how frustrating it can be when you are suffering and you've been given up on

Have a read about TMS and let me know what you think, it's about taking care of yourself now.

Best Wishes

Hi there. Have not read the article you are on about, but what you say makes perfect sense to me. I have suffered with stress and anxiety all my life and tried to cope. I suppose as a child I accepted it as my normal and assumed every one else was the same, but since the physical problems started forty years ago (in my late thirties, I am 77 now) I have got progressively worse and have tried just about everything, from physio for starters, acupuncture, chiropractor, hypnotherapy (all attempting to treat physical pains) and been almost constantly at the doctors. Nothing works. Diagnosed with fibro 11 years ago and tried various meds, but cannot take because of side effects making things worse. I think doc is at a loss. I have accumulated more and more symptoms as time has gone on and for the last three years have been in a shocking state, and feel really ill a lot of the time which is very scary. Added to my problems 3 years ago DH diagnosed with dementia, had a knee operation and then a bad fall breaking his foot, and how can hardly walk. I definitely think the stress causing muscle tension is a big contributing factor, but getting rid is practically impossible. I havbe tried all sorts. Latest thing I tried was counselling, both in a group and solo. It does help a bit, but to be honest, not much. Also I have underactive thyroid which is not helping, as it has similar symptoms, and I was starting to pursue that further until lockdown kicked in, now that like everything else has got shelved.The worst part of all this is I look normal (well relatively at least) and so no one understands what I am going through, and to be honest I have found it is too much hassle to try and explain as I don't people believe me anyway - who would? I wouldn't if I hadn't got it myself! So it is a case of soldiering on as best I can. Sorry to ramble on, but I do understand where you are coming from. Take care.

Hazel_Angelstar
Hazel_AngelstarAdministrator

Not aware of this being provided by NHS Scotland but will definitely have a look and see what it's saying.

Sorry to hear that the body reprogramming booklet made you feel very down. However I have downloaded it and read it, and it makes perfect sense to me. With chronic conditions it is important to accept your limitations and learn to pace yourself. I have slowly adapted my lifestyle over the last 14 years to adjust to these guidelines. My motto is "little and often" , never overdoing things! There is similar information on another website called The Pain Toolkit, which you may find helpful to read. Xx

I believe that it’s a very positive article, if you think of Fibro being an autonomous function that has gone wrong it puts things more into perspective. Your pain is in your head but not in your mind, it’s in your brain. Your brain is misinterpreting what your body is telling it and sending pain signals out when it doesn’t need to. Think logically about it, what have you done to get this all over pain? In 95% of us nothing, therefore it shouldn’t exist physically; if you try to work through it ignoring it then your brain just turns up the wick - more pain! Painkillers, why do they stop working? Simple, our brain knows what we are trying to do so just turns up the wick until it makes its presence felt again, so we need more, so it turns the wick up again and so on! You will never win by trying to treat the symptoms, your brain will overcome your attempts. The strategy of being positive and telling your brain that it’s OK, there’s no real danger or damage makes a lot of sense but takes a lot of hard work; I’m in this process myself at the moment - I’m nearly off all Pharma meds, I’ve been off painkillers for nearly two months and in less pain than I was at my worst. I feel much more “me” and better in myself. I’m eating healthy, drinking healthy and taking supplements to help with any deficiencies plus CBD products for calming down and general health. I feel better now than I did in the early stages of coming down with it.

My advice is to read it with an open mind, don’t make judgments about it until you have really thought about it, importantly don’t be dismissive of it until you understand fully what is being said.

I attended a course locally based on it and didn't find it that helpful. The only messages they really instilled was changing activity every 20 mins, not possible if you still work. Pacing self which I did anyway. The main thing seemed to be that analgesic drugs don't help but I disagree. A lot of us have other issues with our fms, I get migraines and IBS and have a lot of Osteoarthritis. If I didn't take painkillers and other meds I couldn't function.

It was apparant from the group that everyone is different, some get more pain others fatigue.

While CBT can be useful for things I have not found any help from it.

If group is available could be useful to find new friends locally who understand your plight.

Each to their own and others may find it very helpful, it's only my experience of it.

Mr_Zoonie
Mr_Zoonie
in reply to Julesubu

I agree, if you have physical conditions as well as Fibro then Painkillers are your only help but you should be careful not to let your body get used to them, if they don’t seem to be working you need to try something different not just carry on taking them because you’re frightened to stop; it won’t work.

I liked the article and recommendations. You need to show fibromyalgia who is the boss!! I find keeping a diary of symptoms really helpful. 😀

I went to a specialist years ago that reprogrammed my body. I worked so well but I had to travel 2 hours to get to the appointment and it was so expensive I couldn't keep it up.

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