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The UKFibromyalgia Forums • View topic - What an 'expert' thinks of us.



What an 'expert' thinks of us.

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What an 'expert' thinks of us.

Postby mamax9 » Wed Apr 01, 2009 6:10 am

One of the problems is that fibromyalgia patients are in pain to even move, so to suggest graduated exercise is often rejected out of hand. BUT by graduated exercise we mean starting with 5 steps a day moving upwards gradually to 10 perhaps and so on and so on. Yes, it will hurt to start with, of course, having been restricted in mobility anyone who increases their exercise will suffer (fibromyalgia or not). but work through the discomfort and carry on as pain relief will follow. Unfortunately not many sufferers are willing to try this and so end up in a vicious circle of pain, immobility and take the attitude that health professionals are unwilling to help. So in treating fibromyalgia, we have to take a holistic view. When patients say 'I will do anything to get out of this pain', what they usually mean is that they are willing to take any drug to ease the pain and not take control of the condition. There are many pain management programmes out there that will help.

This was posted on a site a friend of mine uses by someone who runs a clinic for fibromyalgia patients. Nice to know she apparently considers us so lazy and unwilling to help ourselves!
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Re: What an 'expert' thinks of us.

Postby LinzWorld » Wed Apr 01, 2009 7:33 am

Have you tried graded exercise? I know people it has helped get out of wheelchairs.
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Re: What an 'expert' thinks of us.

Postby mamax9 » Wed Apr 01, 2009 7:45 am

yes....I have done graded exercise under the guidance of my rheumy and physio but was told not to push myself any further because it was causing too many problems.I did not just give up exercising but stuck to the level I had reached at that point. Sorry if it sounds as if I am complaining but I just resent the inference that most people with fibro just want to swallow pills and make it go away without making any effort themselves.
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Re: What an 'expert' thinks of us.

Postby MCT » Wed Apr 01, 2009 8:52 am

My GP gave me some exercises to try last week for a really painful neck & shoulder (lot worse than usual). I only managed a few of them for 2 or 3 days and then ended up in A&E on Saturday cos the pain was excruciating. Turned out I have tendonitis and was told to stop the exercises until I could see a physio first. I've asked for a priority appointment but who knows how long that could take!
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Re: What an 'expert' thinks of us.

Postby velvet » Wed Apr 01, 2009 10:55 am

IMO this view of graduated exercise is totally missing the point - yes when i am well i slowly increase what i am doing, the problem comes when there is a flare - all that carefully graduated build up disappears in a flash and i am starting from a much lower ability to build up again next time i am well - i dont get worse through not making an effort, by sitting around asking for pills, i get worse when this condition stops me doing even the minimal amount for a short time and i lose whatever i had got up to
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Re: What an 'expert' thinks of us.

Postby motherelephant » Wed Apr 01, 2009 2:16 pm

I will be totally honest i have given up on exercise because it leaves me totally exhausted for days on end .I stand at the shop all day,im not a lazy person .I just cannot stand the total fatigue that over whelms me after exercise and i have tried various forms swimming, walking ,gym all end the same way. motherelle.xxx
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Re: What an 'expert' thinks of us.

Postby Min » Wed Apr 01, 2009 5:15 pm

The treatment of fibromyalgia with graded exercise is based on the powerful psychiatrist's insistence that we have become deconditioned because of a somatoform disorder:

http://www.newscientist.com/article/mg2 ... ?full=true

So that most of the medical staff you meet have been trained to think this & to believe that increasing your exercise will eventually cure you, depsite the fact that Fibromyalgia classified by the World Health Organisation since 1992, not as a mental disorder but as follows:

M79 Other soft tissue disorders, not elsewhere classified
M79.0 Rheumatism, unspecified
Fibromyalgia
Fibrositis




("Somatoform disorder

Somatoform disorder (also known as Briquet's syndrome) is characterized by physical symptoms that mimic disease or injury for which there is no identifiable physical cause[1] or physical symptoms such as pain, nausea, depression, and dizziness. Somatoform disorder is a condition in which the physical pain and symptoms a person feels are related to psychological factors. These symptoms can not be traced to a specific physical cause. In people who have Somatoform disorder, medical test results are either normal or don't explain the person's symptoms. People who have this disorder may undergo several medical evaluations and tests to be sure that they do not have an illness related to a physical cause or central lesion. Patients with this disorder often become very worried about their health because the doctors are unable to find a cause for their health problems. Their symptoms are similar to the symptoms of other illnesses and may last for several years. People who have Somatoform disorder are not faking their symptoms. The pain that they feel is real, and they feel what they say they are feeling. A person faking their symptoms may have factitious disorder (an unknown psychological cause for making oneself sick) or malingering (making oneself sick for personal or monetary gain; i.e. disability, insurance, etc). This is not at all related to the Somatoform Disorder, however.

A diagnosis of a Somatoform disorder implies that psychological factors are a large contributor to the symptoms' onset, severity and duration." )



I can do basic stretching exercises, but graded exercise makes me worse and I refuse to do it again.
Last edited by Min on Thu Apr 02, 2009 2:30 pm, edited 1 time in total.
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Re: What an 'expert' thinks of us.

Postby auroura » Wed Apr 01, 2009 8:55 pm

I saw rheumy yesterday, i asked him if there was ANYTHING at all I could do to try and help myself, his answer was physio, I need physio because he says my spine is not straight (again :shock: ) all the muscles either side of my spine are very tight and knotted and in spasm, the pain i was complaining about in my lower back is muscles spasms, which he agreed could be excruciating, I said excercise??? wondering if he would say yes, he said NO. Do not do anything wait for physio. The pain I couldnt understand that radiated from my hip and down my thigh is 'Trochanteric Bursitis' Ended up with an injection for that.
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