Fibromyalgia No Cure (cut and paste into wordprocessor )

[johnsmith]

Introduction

I am posting this in painconcern in order to receive critical comments before I post it on the Fibromyalgia website. I hope any critical comments made here can enable me to correct any mistakes in meaning I have made. Also I hope any critical comments made will bring to my attention anything I have not thought of. Sorry for all the repetitious wording. It is a technical document that is planned to be given to a medical doctor trying to treat patients with Fibromyalgia symptoms.

Introduction

Beliefs I have heard concerning Fibromyalgia

1.There is a belief that a cure for Fibromyalgia will be found one day when the scientists can determine what broken part of the body is at fault.

2.There is a belief that there is no treatment for Fibromyalgia at present and one day there will be when the ground breaking research has been done.

3.There is a belief among many medical professionals such a condition does not exist

4.There is a belief that one treatment will work when it is found.

5.There is a belief that Fibromyalgia is a disease

6.There is a belief that Fibromyalgia is the result of faulty pain sensitivity

I believe that I suffer from Fibromyalgia and I believe that I have the condition under reasonable control as a result of the various therapies I engage in.

Fibromyalgia my beliefs

1.I believe that Fibromyalgia is not a disease that can be treated.

2.I believe that Fibromyalgia is a health disability that can be very difficult to effectively manage

3.I believe that Fibromyalgia is a condition that varies according to the external and internal stress that the body experiences

4.I believe that for Fibromyalgia to manifest itself some part of the body needs to have been damaged or compromised

1.Damage can be broken tissue

2.Damage can be pressure on a nerve which results in referred pain

5.I believe that in the majority of cases that Fibromyalgia is not the result of faulty pain control.

6.I believe that there are ways to effectively manage Fibromyalgia, even if not all the time

What is treatment, therapy and management

Treatment definition

1.Treatment is something that can be applied to a person with a health disability by a person

2.Treatment can be drugs, herbs substances derived from herbs, vitamins, or minerals taken by a person with a health disability

3.Treatment can be bone setting. Bone setting treatments are hundreds if not thousands of years old. Example of a bone setting treatment is chiropractic

4.Treatment can be the application of a physical method such as acupuncture, massage of various sorts, fascial release therapies, Body realignment therapies, heat or other applied treatments to the person with the health disability.

5.Treatment can be the application of Reiki type therapies to the person with the health disability. I would put spiritual healing and prayers by another person as an example of a Reiki type therapy.

6.Treatment can be the application of psychological therapies such as psychoanalysis, various forms counselling, playing mental games, engaging in mental distraction activities non religious forms of meditation and mindfulness or the application of various mental activities such as singing and praying

7.Treatment can be the application of spiritual practices from the various religious traditions such as meditation and mindfulness, prayer or attending and partaking in religious group practices.

8.Treatment can be the application of special physical exercises

9.An overall treatment can be the application of multiple treatments.

Therapy definition

A therapy is the application of treatment by the person with the health disability or by a therapist to a person with a health disability.

Management definition

1.Management is the application of various social control techniques when needed

2.Management is the application of various learning techniques when needed

3.Management is the application of various skill techniques when needed

4.Management is the application of various investigation strategies when needed to determine what is the best needed treatment at the time

5.Management is the application of more efficient and effective brain processing skills

6.Management is application of various mental activities when needed

7.Management is the taking of various treatments when needed

Therapists who work with people who have Fibromyalgia and what they find

1.Some Physical therapists who treat people who have Fibromyalgia find that they can improve the condition at the therapy session. The improvement that has been gained at the therapy session is lost within a short period of time.

2.Chiropractors who who treat people who happen to have Fibromyalgia find that they can improve the condition at the treatment session. The improvement that has been gained at the therapy session is lost within a short period of time.

3.Alexander Teachers who teach people who happen to have Fibromyalgia cannot do anything about the area of the body that has been compromised. What they can do is to teach people who happen to have Fibromyalgia develop better ways of both responding to their condition and being more sensitive to their habitual response to their condition.

4.I have worked with people who I believe have the symptoms of Fibromyalgia. I find that by physical means I can provide a reduction in pain and better body movement freedom. The better movement freedom is soon lost and the reduction in pain they had does not last.

Conclusions concerning Fibromyalgia

Based on my conversations with therapists who have provided treatment to people with Fibromyalgia I have come to the following conclusions concerning the best approach for a person with Fibromyalgia to engage in

Tools to investigate

1.how they think

2.how they hold their body posture state

3.how they engage in movement

4.how areas of tightness (scar tissue or muscle) effects them

5.How environmental conditions effects them

6.How social situations affect them.

7.How various forms of thing affects them.

8.How they process information

9.How to become aware of how the brains patterns of movement and the commands from the brain influence the quality of life

10.How to develop more effective and efficient brain processing skills

The person with Fibromyalgia needs to

1.Find what tools they need to obtain in order to fully investigate themselves

2.To continually learn how to use the tools that are used to investigate themselves

3.The person with Fibromyalgia needs to learn how their body responds under various conditions using the tools that are needed to investigate themselves

4.The person with Fibromyalgia needs to remember how their body responds under various conditions

5.The person with Fibromyalgia needs to investigate the various physical therapies available to see which one gives give quality of life improvement

6.The person with Fibromyalgia needs to determine which combination of physical therapies working with each other can give the best quality of life

7.The person with Fibromyalgia needs to become aware that there are possibly more effective and efficient brain processing skills that can be developed

Conclusions for a person with Fibromyalgia

1.The person needs to continually investigate what works and what does not because things keep changing

2.Each person’s Fibromyalgia is unique to them and may be different to another person’s experience

3.One therapy by itself is not as effective as a number of therapies.

4.Each person must investigate to determine what set of therapies is suitable

5.To effective manage the condition a number of different therapies to be determined by investigation are required

6.Each person must modify and learn to be sensitive how they use their mental processes.

[Bananas5]

I don't know enough about fibro to comment.

Surely sensible to post on fibro site? They will correct by the bucketful. Get lots of personal stories too!!

x

[katieoxo60]

Hi again John, I am sorry I do not have much time to read your post and its content . However I noticed a couple of anomallies in the early part of the post. 1. this illness is not to do with bones. 2. It is now classified as an Arthritis not sure why as the word arthritis means joint pain caused by bones. 3 as the word myalgia suggest it is of muscular origin. & Fibro is a shortened word for tissue which is what muscles are made of.

Perhaps as suggested you should post on the Fibro myalgia site as they are the ones dealing with the on going pain of this much maligned illness. Ongoing pain has to be addressed according to the cause and some can only be managed as there is no cure for the illness.

[bantam12]

To many "I believe" and " Treatment can be" and "Management " words, could be shortened considerably.

[LeighBlyth]

I summarise as:

Fibromyalgia is a label for otherwise unexplained symptoms. It is not a diagnosis of a specific disease.

The symptoms are real.

Sufferers need to take control of their condition, there will be no magic medication to fix it.

I learned to heal.

My symptoms were due to chronic mis-use of my body. I was imbalanced and misaligned. Twisted, my body stiff and sore with a restricted range of movement. The stresses and tensions that caused all sorts of pain shifting around my body. A constant procession of pain and weird sensations. Poor sleep and depression.

Focusing on using my main muscles of movement with my Base-Line (pelvic floor rectus abdominis) at the core of all movement has allowed me to slowly regain my range of movement, releasing the pain little by little. I now feel better than I ever have before.

A physical usage problem causing "fibro" can be ruled out if the body is aligned and balanced i.e. used correctly and the person has a full range of natural movement, in which case other causes for the symptoms can be further investigated BUT if you don't move well then you need to rule out this as the cause, and only can do that yourself.

5 minutes, a few times a day.

Breathe with your Base-Line. Feel its strength grow. Connect with your body. Learn to feel how to heal.

How many people in pain are willing to give it a go?

[bobbybobb]

I don't think it's about belief's or what you believe. What really holds the power of persuasion is scientific research. Peoples belief's don't amount to much without the evidence to back it up. Very repetitive. You did say you were looking for critical comments, well I don't see anything new here. The conclusion is, just managing symptoms to ever changing stimuli.

[desquinn]

Hi,

On the fibro forum your miniature post has been locked with a suggestion to contact FMA UK so we can see that ethical approval is in place for example and analyse your proposal and reply appropriately. We would share this with our medical advisory board to allow them to content.

I have to say I have quite a few issues with your hypothesis / statements above but can appreciate that it is a draft and their may be more detail. If I were to reference one statement from above it would be "5.I believe that in the majority of cases that Fibromyalgia is not the result of faulty pain control."

Your belief and the statement may be well intentioned but the belief alone is not enough to dismiss the weight of evidence that currently exists to support the current theory for fibro and what may underpin other related/similar conditions. We are learning more and more about chronic pain every day. I would suggest watching some videos by Lorimer Moseley that explain where some pain research is going.

[johnsmith in reply to desquinn]

Thanks for the reply.

I have drafted a review. The review lays out things in more detail. I was at an Artificial Intelligence (AI) conference today.

The AI conference discussed how to modify questions after receiving answers to questions. The AI was a company confidential program which is designed for one use. It is widely used and has been well tested. I have discussed with the conference speakers if they can adapt it for fibromyalgia. The answer was yes.

I now have to modify my review to describe the AI program to be used in the NHS for fibromyalgia. As you know fibromyalgia is unique to each person.

The AI program will enable a nurse to make a fibromyalgia assessment at all stages of treatment. The AI program will enable a therapist to tailor their treatment to the person.

Writing Software if full of difficulties. The NHS will want to do a million pound trial with lots of people so unfortunately we have to wait a few years.

I was working up to 3 pm this morning to prevent my review on fibromyalgia both to professors at ** University and the conference. It will take a few days to recover. Especially since a straight forward journey took far longer than it should of. I have never known incompetence on the scale I experienced today. Not helped by a student setting the fire alarms off.

Used ** to protect the University from Media invasion.

[bobbybobb]

So are you saying nurses will be making assessments based on AI tick list regarding such a complex disorder.

[johnsmith in reply to bobbybobb]

The answer to the question is both yes and no. A nurse is cheaper than a doctor who is cheaper than a consultant.

The nurse helps the patient answer all sorts of complex questions. There was a text based game known as Hitch Hikers guide to the galaxy. You entered in an answer. The text the machine outputted depended on what had been entered before. A modern version of Hitchhikers guide to the Galaxy is a lot faster and has more answers it can give to a question.

Thus a nurse can make an assessment. The nurse gives the assessment to the doctor. The doctor can make another assessment using a more sophisticated assessment program.

Doctors time expensive. Nurses time a lot cheaper

[bobbybobb in reply to johnsmith]

Nurses are a valuable part of the NHS and many specialist nurses now do the jobs of junior Doctors but most Consultants don't know the complex nature of the disorder or how to manage the condition. To expect a nurse to complete a check list will cost extra expense when the patient needs to be referred to a Doctor anyway because managing Fibro is far out of the realms of the Galaxy for a nurse to manage. It seems like a wasted exercise to begin with. So instead of the NHS saving money they will be wasting funds.

[johnsmith in reply to bobbybobb]

Managing Fibro is not difficult for a nurse. Provided the nurse has had training.

Been offline for a while because of personal difficulties. So my reply is a bit short.

[bobbybobb in reply to johnsmith]

Sorry to hear you are having personal difficulties johnsmith. As for nurses managing Fibro, we'll have to agree to disagree on that one. I do wish you all the best for any other problems you may be having at the moment.