Fibromyalgia.

copacetic said:
I know two people personally, and their symptoms are spot-on (although in a general sense, it's a nebulous array of indications).

Their pain is very real.

They have seen every specialist in town, been poked and prodded and examined from the inside out and had handfuls of drugs thrown at them.

It certainly has more specific indicators than, say, depression, and appears to be recognized as a real affliction by organizations whose opinions possibly rate a little higher than what your professor had to say (****, the guy could not even get his apostrophe correct).
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yaw its a fancy way of saying pain with an unknown cause. Whats going to happen your friends are going to be juggled around from Dr to Dr they will do every test in the book they wont find an exact cause or maybe what ever is causing the pain towards the last ditch effort will be detectable (usually cancers do that - no im not saying for friends have cancer). Perhaps its a pinched nerve

as I said its a fancy way of saying pain and dont know why.

Every Dr has their own favourite drug and they will prescribe to what they know so they will get a lot of analgesics thrown at them.

It becomes a process of elimination now all you can do is endure and time will tell

@ grantza

ah you in DBN, you should see if you can get hold of Prof Terry Govender, im not joking when I say he is one of the world's best ortho surgeons (though it might be a bit late). He goes up to the US, India, china etc to show the noobs how surgery is done. Gadhafi had him flown in his private jet to perform surgery lol
 
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RiaX said:
yaw its a fancy way of saying pain with an unknown cause. Whats going to happen your friends are going to be juggled around from Dr to Dr they will do every test in the book they wont find an exact cause or maybe what ever is causing the pain towards the last ditch effort will be detectable (usually cancers do that - no im not saying for friends have cancer). Perhaps its a pinched nerve

as I said its a fancy way of saying pain and dont know why.
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What is the most common misconception about fibromyalgia?
The top misconception is that people think fibromyalgia isn't a real medical problem or that it is "all in your head." It's sometimes thought of as a "garbage-can diagnosis" — if doctors can't find anything else wrong with you, they say you have fibromyalgia.

There's a lot that's unknown about fibromyalgia, but researchers have learned more about it in just the past few years. In people who have fibromyalgia, the brain and spinal cord process pain signals differently. As a result, they react more strongly to touch and pressure, with a heightened sensitivity to pain. It is a real physiological and neurochemical problem
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http://www.mayoclinic.com/health/fibromyalgia/AR00056

But what does she know, since her opinion differs from yours?

Or any of the zillions of articles and sources of information that pop up when you google the word.

Fibromyalgia, a painful condition affecting approximately 10 million people in the U.S., is not imaginary after all, as some doctors have believed. A discovery, published this month in PAIN MEDICINE (the journal of the American Academy of Pain Medicine), clearly now demonstrates that fibromyalgia may have a rational biological basis located in the skin.

Fibromyalgia is a severely debilitating affliction characterized by widespread deep tissue pain, tenderness in the hands and feet, fatigue, sleep disorders, and cognitive decline. However, routine testing has been largely unable to detect a biological basis for fibromyalgia, and standard diagnosis is based upon subjective patient pain ratings, further raising questions about the true nature of the disease. For many years, the disorder was believed to be psychosomatic ("in the head") and often attributed to patients' imagination or even faking illness. Currently approved therapeutics that provide at least partial relief to some fibromyalgia patients are thought to act solely within the brain where imaging techniques have detected hyperactivity of unknown origin referred to as "central sensitization." However, an underlying cause has not been determined, leaving many physicians still in doubt about the true origins or even the existence of the disorder.

Now, a breakthrough discovery by scientists at Integrated Tissue Dynamics LLC (Intidyn), as part of a fibromyalgia study based at Albany Medical College, has provided a biological rationale for this enigmatic disease. The small biotechnology research company, founded by neuroscientists Dr. Frank L. Rice and Dr. Phillip J. Albrecht, reports on a unique peripheral neurovascular pathology consistently present in the skin of female fibromyalgia patients which may be a driving source of the reported symptoms.
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http://www.medicalnewstoday.com/releases/262132.php

Interesting...

In any event - I am obviously not saying any and all of this info is correct, but I am certainly asserting that you have fallen hook, line and sinker for the canard you claim previously.

Every Dr has their own favourite drug and they will prescribe to what they know so they will get a lot of analgesics thrown at them.
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Lyrica, Tramadol, certain tranquilizers, super high dose vitamin D, magnesium and Cymbalta in both cases.

It becomes a process of elimination now all you can do is endure and time will tell
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Or they have ****ing Fibromyaligia, a recognized condition.
 
ever notice how every source of information with fibro always uses the word "may"

im not convinced

EDIT:

let me explain why.

Pain is not a disease is a symptom and its a biological response to alert oneself something is wrong with an area.

So pain with unknown cause is a symptom with an unknown cause and hence an unknown condition.

Fibro is exactly that pain without an identifiable cause. Its recognised as a disease and has an ICD 10 code as well because the pain is real so you have to treat it.

Thats why im not convinced its like restless leg syndrome.

Im not saying its not real im just saying its an incomplete diagnosis in my opinion
 
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copacetic said:
They do take between 24 and 72 hours to kick in though (Unless you chew through the time release coating).

Don't expect immediate relief.
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That's why alternate medication should be administered during the interim window period and that provides a smooth transition. It takes a skillful pain relief Dr to titrate the dosage and most doctors here haven't a clue when it comes to effective pain relief without oversedation or under prescribing. It's not Hospice expertise either because the person needs to maintain an active lifestyle but as pain free as possible without sedation.

Peak plasma levels reached on second dose and the dose is maintained from there on. I've found that due to the OROS action there is a taper downwards around 12 hrs but this can be remedied by a second dose on 12 hours (depending on the strength of course) and then it's peak plasma 6 hours hence. Relief is not only immediate after it starts but remains consistent. The main problem with Jurnista and the Oros method is establishing the bioavailability of the medication.
 
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RiaX said:
@ grantza

ah you in DBN, you should see if you can get hold of Prof Terry Govender, im not joking when I say he is one of the world's best ortho surgeons (though it might be a bit late). He goes up to the US, India, china etc to show the noobs how surgery is done. Gadhafi had him flown in his private jet to perform surgery lol
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Cape Town, as is my mother. Flying her to Dbn is not an option.
However, do you have any contact details for the prof. I am thinking to maybe contact him & find out if he is ever in Cape Town, and if so, try make a plan to get my mother to him.
From an academic aspect I think my mother is a bit of a medical curiosity. She has seen specialists all over the country, mainly neuro and ortho. The pain aspect is one thing, but they are puzzled as to why she is was unable to walk. Obviously at this late point, after being confined to a wheelchair so long she has zero muscle strength in her legs. More worrying is no feeling at all in her one foot - so much so, that she often runs over it with the wheelchair without feeling a thing. She only realizes this has happened when there is blood on the floor.

I have no doubt having watched her suffer all this time, I would have "offed myself" many years back were I in the same position.
 
unfortunately no. He works all over the world. What you can try to do is contact UKZN medical school or king george hospital and see if you can get hold of him via email.
 
grantza said:
Will do
thanks
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If he says its a lost cause then its a lost cause. Ive seen this guy with my own two eyes perform a surgery that the entire medical community deemed impossible and he succeeded.

The patient has a spinal brace along the entire spine on both sides and it was sticking out of their back (like a porcupine). There was also some hardcore technicality i quite didnt understand but this guy took the entire brace from neck to lower back and inverted inwards so it wouldnt show and the patient could have a normal lifestyle and he did it like he was cutting vegetables for supper .... Ive seen some epic practitioners in my time but no one as good as this guy. He is like the surgeons they make documentaries out of on TV.

So yeah if you can track him down it might be the only person that can help now. He is a people's Dr as well although he seems arrogant he says what needs to be said and does what needs to be done. He had a heart attack and when he woke up in hospital he discharged himself and left straight back to work because he had patients to tend to you dont get this kind of Dr anymore.
 
Well, my wife had a flare up last night so she asked some support members what they do when they have a flare up to relieve the pain symptoms. She also asked what meds they take for treatment. I was quite shocked to read the replies. Most are on so many meds, one woman takes morphine when it gets real bad.

All my wife takes is a very weak anti depressant...well, not even classed as anti depressant...more like anti anxiety so it reduces stress, and so hopefully reduces chances of flare ups...

But ja...I was and still am shocked and the concoction of meds these sufferers take :wtf:
 
As I have mentioned before in other threads, high quality cannabis is extremely effective in the event of a flare up.
 
@grantza - I hear you - its a tricky situation. I've got a similar situation in my family's history - the kind that makes grown men cry 30 years later. Manage it as best you can with whatever means available to you. I'd urge you though not to risk your position & that of your SO/kids by going on a crusade against said doctor. Especially not in court. You think doctors are bad...wait till lawyers are involved.

I'd also be very cautious of this neurosurgeon promising to pintpoint the source of pain for a disease where the rest of the world's experts can't even agree whether its neurological/psychological etc.

RiaX said:
Ive seen this guy with my own two eyes perform a surgery that the entire medical community deemed impossible and he succeeded.
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I'm sure you're right about his skill at surgery, but surely you can see that a scalpel is not the answer when the medical community can't even decide what it is that needs the cutting (if anything at all - some think its psychological). Nobody knows and surgery is unlikely to improve things.

Hosehead said:
...
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Quite. I'd investigate hydroponics personally...for growing uhm herbs. Like parsley and stuff.
 
I agree here that it's not a diagnosis. That doesn't mean it's not a real condition, just that doctors are clueless what the condition(s) is. It is worse if you don't get enough sleep and frequently does come on with depression. I didn't know some people had it so bad that they can't function. The Vitamin D you mentioned won't help for that but I have noticed my pain tolerance in general to be worse when I'm low.

@Grant: This is something you should have checked as people in wheelchairs are often very low. Also some people have been cured by an extended course of antibiotics. Not that it is usually the case but since she had an infection it's worth looking into. Being mistreated by doctors and my mother too I definitely encourage you to take this further as well.

@Celine: I am not aware of any bloodtest that can be performed. Fibromyalgia is when they can't find a cause. If they found something in the blood they must be narrowing it down to a proper diagnosis.
 
There are three people that I know of with this condition at work - as in on the same floor as me. One lady is part of my team. She was off for a very long time last year - the insurance did not recognize this as a disability unfortunately.

She does suffer from depression. I get this. What I do not get are these claims of pain - as far as I can see there are no winces or gasps or twinges. When I feel pain I show it; even though I may try to hide it. I actually do need more insight into this condition so I can understand it.
 
Spunkywunky1 said:
There are three people that I know of with this condition at work - as in on the same floor as me. One lady is part of my team. She was off for a very long time last year - the insurance did not recognize this as a disability unfortunately.

She does suffer from depression. I get this. What I do not get are these claims of pain - as far as I can see there are no winces or gasps or twinges. When I feel pain I show it; even though I may try to hide it. I actually do need more insight into this condition so I can understand it.
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Pain happens, is experienced, and is related very differently depending on the type of pain and the recipient. I suffer excruciating pain in my leg where I had a tumour removed from a bone some years ago. I barely flinch these days when it happens. I also suffer from proctalgia fugax (yes, literally a pain in the arse) and I have no way to control my body's reactions to it, which can sometimes be quite severe.

They are different types of pain. One is a pulsating, throbbing pain that feels as if it goes deeper and deeper into my leg, and there is nothing that I can do for it. The other is a sharp spasm of pure unadulterated pain which I certainly react to. Women who suffer from it have compared it to childbirth. Except it happens once a month for me, albeit only for between a half an hour to an hour at most.

Hence the Scrubs pain-chart: :D

scrubs-anyone-25241-1270012932-27.jpg
http://s-ak.buzzfed.com/static/imagebuzz/web04/2010/3/31/1/scrubs-anyone-25241-1270012932-27.jpg
 
DJ... said:
Pain happens, is experienced, and is related very differently depending on the type of pain and the recipient. I suffer excruciating pain in my leg where I had a tumour removed from a bone some years ago. I barely flinch these days when it happens. I also suffer from proctalgia fugax (yes, literally a pain in the arse) and I have no way to control my body's reactions to it, which can sometimes be quite severe.

They are different types of pain. One is a pulsating, throbbing pain that feels as if it goes deeper and deeper into my leg, and there is nothing that I can do for it. The other is a sharp spasm of pure unadulterated pain which I certainly react to. Women who suffer from it have compared it to childbirth. Except it happens once a month for me, albeit only for between a half an hour to an hour at most.

Hence the Scrubs pain-chart: :D

scrubs-anyone-25241-1270012932-27.jpg
http://s-ak.buzzfed.com/static/imagebuzz/web04/2010/3/31/1/scrubs-anyone-25241-1270012932-27.jpg
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Thanks DJ. The thing is, it is hard to understand when you don't have personal experience of it - that's why I ask. :)
 
HavocXphere said:
I'm sure you're right about his skill at surgery, but surely you can see that a scalpel is not the answer when the medical community can't even decide what it is that needs the cutting (if anything at all - some think its psychological). Nobody knows and surgery is unlikely to improve things.
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he is a professor in orthopedics. He deals with things like this he also happens to to be a master surgeon. I dont know if it will help or not but im giving grantza some options :)
 
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