I was lying in bed (unable to sleep) and a thought came about how people with fibro are treated by the current medical system.
How can the Medical establishment hold it's head up with any credibility, Look at the numbers of people the world over who are suffering with this!
The Dr's have got to have a great percentage of there patients coming through the door each day with fibro,,, all displaying the same symptom profile and problems.
The numbers of people with fibro are constantly growing and to one extent or another the Dr's seem to enjoy pretending it doesn't exist. The primary diagnosis of choice seems to be Depression,, or if they are really dismissive Low Mood!
One of the countries with the highest percentage of people suffering from fibro is in India where they don't even have a benefit system, which rules out benefit-itis !
Now: Dr's have a level of intelligence, or at least an ability to remember things to make it through the course in the first place, yet they seem to be unable to ask themselves a few simple questions.
What is going on ?
What is causing this to happen ?
Why am I still handing out Antidepressants that don't work ?
Why am I not doing something ?
Written by
RayB
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I think the problem is also, there is no specific diagnosis that can be based on blood tests or scans, it's a clinical diagnosis. Below is the NHS guidelines for diagnosis, which anyone who thinks they have Fibromyalgia, should print out and give their RheumyCon/GP, and ask them to check.
Criteria for diagnosing fibromyalgia
For fibromyalgia to be diagnosed, certain criteria usually have to be met. The most widely used criteria for diagnosis are:
* you either have severe pain in three to six different areas of your body, or you have milder pain in seven or more different areas
* your symptoms have stayed at a similar level for at least three months
* no other reason for your symptoms has been found
The extent of the pain used to be assessed by applying gentle pressure to certain "tender points", where any pain is likely to be at its worst. However, this is less common nowadays.
It is more than that,,, it is not about Diagnosis,,
The problem exists irrespective of diagnosis!
I myself was diagnosed by a Rheumatologist about 10 years ago and, Of course the problems themselves started about ten years before that. The Rheumatologist told me that it was a "Diagnosis of omission" e.g. they had ruled out everything else so it had to be fibro.
It is the attitude of the medical establishment to the disease I am talking about!
Couldn't agree more RayB . My GP, who is very good in all aspects of medicine bar this, made a diagnosis in under 3 mins then told me it was untreatable! Does that happen to cancer patients I ask myself, or is it just we difficult peeps who have invisible diseases that no one understands. Many doctors don't believe they even exist; just an excitable imagination!!!
Yes Anna, The funny thing is I have a neighbour that has fibro and I can see it a mile off,,, we joke that we walk the same way,,, and we do,,, people with fibro have a certain posture and way of moving that I am starting to recognise instantly and to be honest feel like going up and asking if they have fibro just to prove myself right but I have no wish to be intrusive.
Hello RayB- from the 14years ago I was diagnosed it is a process of elimination on drug therapy that might work for each individual, you are started off with amitrip as they are said to help you sleep, for some you wake up in a terrible state and so on to next trial probably an opiate, the onto the anti epileptic drugs and so on.... It is known that for SOME sufferers drug therapy is a waste and that acupuncture and hydrotherapy are an alternative BUT not every Trust has a qualified person nor a pool for these therapies. Its a postcode lottery! Having found hydro a good remedy for me the alternative has been going to local swimming pool that has a Jacuzzi, soaking in the warm bubbles and choosing a time when there are few people in I can do some muscle stretching my daughter comes with me on "bad days" to help me get dressed, I have found aquatics good for me. Many g.p,s have no knowledge at all about fibro nor its symptoms, now that it has become TV knowledge of or condition being chronic and so we hope to get better facilities and alternative treatment centres in the future, my benefit assessor has told me that their reports and recommendations from themselves and the applicants are filtered to DWP and then to Health Minister- here,s hoping!
you say Many g,p,s, have no knowledge at all about fibro or it's symptoms !
I find it very difficult to accept that any General Practitioner would have "No Knowledge" of this condition or symptoms ,, there are few people today that do not have a friend, neighbour or relative who suffers from the condition. GP's see an average of 6 patients per hour over an 8 hour working day perhaps 30 patients allowing time for other things to be done. This amounts to around 150 patients per week.
My point is,,, these GP's are supposed to keep up to date with medicine, it is their duty to their patients. Yet we are expected to believe that some of them never see patients with an illness that is as common as fibro, they would have no problem diagnosing rickets and just how many cases of that do they see today on a daily basis !
Perhaps this having "No Knowledge" is a personal choice that is allowed to these medical professionals!
I don't think they even rule out everything before the diagnosis of fibro is mentioned. In my case my previous GP seemed to say immediately that it was fibro but sent me to rheumatologist for confirmation where I was told it was the least of my worries? Nothing else was said. No explanation of what was to come or what could be done just sent back to gp. Basically get on with it. Up until that point I was (and still am ) convinced I have hypothyroidism as my blood tests have shown. But doctors don't seem interested in this either. I have been told Im depressed...here are some anti depressants, obese.... get your jaw wired or have bariatric surgery, Its in your head...nothing we can do or you need to see a counsellor. So we have on one hand disbelief from DWP and doctors saying its incurable. If it wasn't for sites like this we would all be thinking we were the only ones feeling like this and accepting anti depressants to shut us up.
I think many can relate to your summation,, There is just no consensus that relates to what "We the patients" are going through. We just keep getting their personal opinions thrown at us depending on their, mood or view at that moment, in my mind this is abuse!
Yes it is sad. I have had some awful doctors who have basically said its all in my head. Fortunately lately ive had some great ones who literally argued with them and said, no she has CFS. Then i saw a rheumy and they were like, you have fibro too. But in the early years it was hard. I think doctors are not educated enough on certain illnesses.
Doctors don't seem to be interested in educating themselves on illnesses or the powers that be stop them from treating people accordingly. Just feels that no one is interested any more.
I sometimes wonder if it is not some sort of mind game that Dr's try to play, either pretending they do not know what it could be or suggesting that it is all in your head,,, thinking that somehow they are doing the patient a favour and that somehow if they portray a dismissive attitude that it may have some sort of positive or beneficial effect.
If this is the case it is tantamount to abuse! I have difficulty believing that that they are so misinformed about a condition that seems to be rife the world over!
What I want to know more than anything is: What is causing this and why is the numbers escalating ,, is it the food,,, is it something to do with electromagnetic pollution or some other pollution,,, or the stresses imposed by a modern world that the human system just can't cope with?
I think these are questions that are just not being asked,, yet questions that demand answers.
I know that the medical world historically like to name things that they know little about and even less about treating as it gives the patients a feeling of the Dr being knowledgeable,, it also gives the medical world a stronger illusion of credibility!
This air of silence seems to be rampantly endemic, many of them just can't even bring them selves to say the word "Fibromyalgia"
My argument is that this dose not serve their patients in the slightest, it makes them feel more isolated and alienated in a world in which most become lost!
Today we have the whole patient anonymity where even patients in the advanced stages of Alzheimer's are respected and things are as open as possible,, yet "Fibromyalgia" and few will address the subject!
We the patients and sufferers deserve the respect afforded to others irrespective of the medical profession dragging it's heels !
The world statistics speak volumes if the Dr's will not !
Totally agree with you Ray! There are so many members on here who say that their doctors cannot look them in the eye when they say the word Fibromyalgia!
I genuinely believe that money is a key motivator? If there is no profit then there are no treatments? However saying that, it does not answer the fact that if this was flu it would be see as a global pandemic by now? I really wish I had an answer as to how to address this issue?
I think most today are very aware that drug companies are ruthless when it comes to profit. The numbers with fibro suggest great potential for vast profits: this leads me to think the status quo ( an air of silence on an epidemic while attempting to make the sufferers feel stupid may just keep them quiet and in place while at the same time easy to dismiss as malingers) May be being actively encouraged.
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