Fibromyalgia and the body reprogrammi... - Fibromyalgia Acti...

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Fibromyalgia and the body reprogramming process

Simon99 profile image
13 Replies

My wife was formally diagnosed with Fibromyalgia with severe pain, brain fog, fatigue amongst other symptoms. After an initial phase of investigation, diagnosis and medical symptom reduction she was fortunate to come across this site bodyreprogramming.org/.

Using the material on this website, supported by her GP, has led to massive improvement, reduced medication and a build up to being able to walk at least 5 miles a day. This has helped my wife find a balanced approach to what is now a near normal life, with just an occasional flare up, sometimes months apart.

So my message is aimed at raising awareness of this programme as I think it offers help given the positive change experienced by my wife.

13 Replies
9jababe profile image
9jababe

Thank you so much for sharing this. I’ve read it and I can see myself in some of the things not to do. I’m definitely going to try some of the solutions mentioned in the book.

Thank you for the link. I am very interested in the analogy of the body as an intelligent machine that is malfunctioning. However I am finding it hard to open it at the moment. I think it is the internet.

JoseT profile image
JoseT

good approach and here some scientific info about this treatment

journals.sagepub.com/doi/fu...

JoseT profile image
JoseT

here also a video from the referred site

bodyreprogramming.org/Hylan...

Cat00 profile image
Cat00

I remember reading this years ago. The biggest drawback is that I cant do things for half an hour at a time the world is just not set up that way. I don't think I know many who could fulfill that part of the course realistically.

JayCeon profile image
JayCeon in reply to Cat00

Hi Cat - not sure how you mean that. I'm having to go under even that for many things on many days. As it's not possible at work I can only work in home office. Almost everything I do is in short stints, often using task-switching inside of a certain activity. Including socializing. If an event is in the evening, 20 mins is often my max., maybe 15 mins there and 15 minutes back. I am learning and teaching those I socialize with, and we all prefer that to me not doing anything at all.

Of course it can be adapted in the other direction as well. And if it doesn't work for everything, that doesn't mean the suggestion itself is bad or we should throw the baby out with the bathwater.

It's actually just a guideline to pacing, including how we do exercises etc. (for me that's only 10 mins at a time - but all day, multi-tasking).

Cat00 profile image
Cat00 in reply to JayCeon

I have two small children that require almost constant attention and cannot divide their requirements for me in half hour bursts. All my gym classes are 1hr to 45 minutes long so I wouldn't be able to do any of those etc etc thats what I am referring to.

Mind you I don't do pacing anyway so I'm not the right sort of person for this approach.

Christabel profile image
Christabel

That looks interesting - thank you. Plymouth University is where some research into Virtual Reality as a method of relieving pain is taking place or has taken place. I can't find a link to that at the moment, though.

Acdf profile image
Acdf

Thank you for posting this I found it very interesting, a lot of it I felt like they were writing about me, but will attempt to try some of the suggestions

Simon99 profile image
Simon99

I should have added that my wife also tried to remove negativity from her mind set with the help of a councillor. Her most likely triggers these days are when she forgets and dwells on something stressful or worrying, keeping it to herself, let’s the negativity back in. I must add that I’m incredibly proud of how well she has done over the last four years and her determination to get back to as near normal as she can whilst accepting that it is a new normal. She’s brilliant.

Gooddaysagain profile image
Gooddaysagain in reply to Simon99

Your wife is a very lucky woman to have such a supportive and understanding partner! My best wishes to you both.

JoseT profile image
JoseT

The stop program is triggered by lifestyle. The model predicts that the cure is also through lifestyle. By changing your lifestyle you can prevent yourself getting worse and may be able to cure yourself completely. Change in symptoms is slow as improvement takes time

By changing your lifestyle you can prevent yourself getting worse and may be able to cure yourself completely.

Teach your body that the world is a good and safe place. When there is a stop program, the body interprets the world as a bad and dangerous place

If, over a period of time, you fail to respond to your body’s stop signals, your body gradually compensates, and in doing so, it adapts. Your body adapts by changing its software so that the stop signals become stronger.

The stop program is the faulty program that your body has developed, as a way of compensating for a particular pattern of lifestyle – a pattern of lifestyle where stop signals didn’t produce their intended effect. Getting rid of the stop program is essential to recovery.

There are three general rules for eliminating the stop program:

- Do things that DO NOT create stop signals. You need to be able to teach your body that your behaviour does not create stop signals.

- Teach your body that the world is a good and safe place. When there is a stop program, the body interprets the world as a bad and dangerous place.

The simple rule is to do nothing for more than 30 minutes at any one time.

Tips:

1. Don’t sit watching television for hours on end. When you watch television you are not active or relaxing. If you want to watch a film, record and watch it in two or more sittings.

2. Change from one activity to another that feels completely different – make the body feel that it is a real change.

3. When doing housework, don’t do it all in one go. Do housework for a period of time that is less likely to cause a stop signal, for example, 20-30 minutes, then do something else – or at least change the type of housework e.g. vacuuming versus dusting.

4. At work, find ways of getting up from your desk and walking around or doing something different.

5. Discuss with your employer ways in which your shift can be broken up with rest periods or other forms of change.

6. If you have long conversations with a relative, set a timer and explain that you can only talk for short periods.

People with central sensitivity syndrome have the biological changes that are known to result from long term stress. These biological changes cause the body to be in a constant state of alert – as though the body is always expecting stress just round the corner. This state of constant alert can be counteracted by deep relaxation

This reduction will not happen rapidly. It takes time and requires perseverance. At first you may find it difficult, but over time you find deep relaxation gets easier.

Twice a day, try to find a time when you can go into a state of deep relaxation for 10-15 minutes. Deep relaxation means that your body and mind are completely relaxed. Your body can enter a state of deep relaxation only when it feels safe

There are many different techniques that can produce deep relaxation. They include

- word repetition

- mindfulness meditation

- body scanning

- positive self-guided imagery (such as, self-compassion therapy, gratitude therapy).

- visualisation

People with central sensitivity syndromes are often prescribed medicines to ease some of their symptoms such as pain, dizziness and nausea. When used in this way, medicines are helpful as they can dampen down symptoms, but they do not cure the illness. In essence they do not fix the problem. Medicines are generally more helpful where there is a specific hardware problem rather than a software problem.

It is important to avoid taking many different types of pain medicines as the body adapts to any medicine that tries to mimic the way the brain and spinal cord normally deals with pain. Patients can often find themselves on large doses of medication with little benefit. Flare ups are best managed by over the counter medicines, and other techniques that help reduce pain such as heat, TENS machine, and other lifestyle changes

jimmyshoes profile image
jimmyshoes

This sounds very much like the pathway u have followed for last 3 years and advice n education was given by attending a pain clinic weekly for a full day over a 4 week period by the NHS Best thing I ever did ,not a cure certainly but definitely gave me coping strategies n now work out my own timetable and my awareness n positivity is something I control now so being overwhelmed by pain even though is still there ,is more in my control of how I decide to react to it . My happy place is sacred n I refuse to let my mind or body take it away to much It is an ingoing work I process though as too easy to say I can't, or I won't as in too much pain .

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