Fibromyalgia.

[copacetic]

http://en.wikipedia.org/wiki/Fibromyalgia

Fibromyalgia (FM or FMS) is characterised by chronic widespread pain and allodynia (a heightened and painful response to pressure).[1] Its exact cause is unknown but is believed to involve psychological, genetic, neurobiological and environmental factors.[2][3][4] Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients[5] also report difficulty with swallowing,[6] bowel and bladder abnormalities,[7] numbness and tingling,[8] and cognitive dysfunction.[9] Fibromyalgia is frequently comorbid with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress disorder.[10][11] Not all fibromyalgia patients experience all associated symptoms.[12] Fibromyalgia is estimated to affect 2–4% of the population,[10] with a female to male incidence ratio of approximately 9:1.[13] The term "fibromyalgia" derives from new Latin, fibro-, meaning "fibrous tissues", Greek myo-, "muscle", and Greek algos-, "pain"; thus the term literally means "muscle and connective tissue pain".

Anyone know anything about it? Anyone know anyone who has it, or has it themselves?

If anyone does know anything, is it just the fibromyalgia in isolation, or are there other conditions that aggravate and/or are involved (depression, GAD, etc).

Thanks.

 

[Celine]

it is painful, that is all i can say. what is it you want to know copa.

 

[Grant]

This is something she has been diagnosed with.

A while back I started a thread regards weed & it's possible use for relieving pain - for my mother.

Her condition remains a mystery to doctors across the country.
Many years back (30 or so) her one leg would get weak & lame-ish. After exhaustive tests by various specialists, an orthopedic surgeon informed her that if he did not perform a Laminiectomy immediately, she would never walk again.

So she went under the knife of Dr Michael Mair (yes, i putting his name right out there) in Entabeni hospital in Durban.
I have a very good & well respected Dr friend in Durban who also worked out of Entabeni, who told me that during the procedure, my mother "jumped" during surgery (never ever a good thing).
She also got a very serious infection in the surgical wound & had to be kept in isolation in the hospital.

She never walked again !!

She has been in excruciating pain ever since. She has been to every specialist you can think of, and had the usual x-rays, cat scans, mri scans & pet scans. The pain management clinic in cape Town are at a loss to what the cause may be or indeed how to manage it without the use of the most hard core drugs known to man.

So, she has been suffering this pain for ages, she is confined to a wheelchair, she has the bowel & bladder abnormalities, she is hardly able to sleep as a result of the pain, but due to the bladder problems is too terrified to use any kind of sleeping tablet. Her feet are completely numb & sometimes has tingling in the legs - and of course the constant spinal pain.
I go past her most evenings & check that she is in bed alright.
I will sit in the lounge & have a smoke while watching tv while she gets into bed.
More often than not I hear her quietly whimpering in pain & "asking god to just please let her die".

 

[Celine]

grantza - i went to dr mair and i have nothing but admiration for him. i have reflex sympathetic dystrophy which was diagnosed in 2005. after going to the pain clinic and being on copious amounts of medication, which would probably have been the thing that would have killed me and not the RSD, i told him i didn't want to take any medication. he helped me through so much for almost 2 years to deal with this ailment. about a year and a half ago i had blood tests done and it was discovered i have fibromalgia on top of the RSD, just to add to my predicament.

and so i just live with these conditions now and try meditate.

 

[MisterBigglesworth]

http://en.wikipedia.org/wiki/Fibromyalgia



Anyone know anything about it? Anyone know anyone who has it, or has it themselves?

If anyone does know anything, is it just the fibromyalgia in isolation, or are there other conditions that aggravate and/or are involved (depression, GAD, etc).

Thanks.

Curious about the questions, were you just diagnosed? My wife has it, not fun. There is sooooo much to say on this topic, I just dont have the time to write it all up but symptoms differ btw people. Some are so badly affected, eating the "wrong" food type will but them in extreme joint pain. Depression is linked to it too, as well as stress.

I was once told the pain some people experience, your 2/10 could be their 8/10...so when they have a flare up, they are in a world of pain.

There are some support groups, (I dont have it though, but I like to keep informed etc for my wife's sake to at least try see what she goes through) and I read up on their reports of flare ups etc...very glad my wife doesn't have it as bad as they do. I really dont know how they function day to day, with even the simplest of tasks like walking up stairs.

 

[Grant]

grantza - i went to dr mair and i have nothing but admiration for him. i have reflex sympathetic dystrophy which was diagnosed in 2005. after going to the pain clinic and being on copious amounts of medication, which would probably have been the thing that would have killed me and not the RSD, i told him i didn't want to take any medication. he helped me through so much for almost 2 years to deal with this ailment. about a year and a half ago i had blood tests done and it was discovered i have fibromalgia on top of the RSD, just to add to my predicament.

and so i just live with these conditions now and try meditate.

I am glad he managed to help you.
In my mother's case I instructed what is pretty much the top legal firm in the country to take civil action against him.
This also involved investigators.
I at the time had studied cardiovascular perfusion so was talking to medical people all the time and getting all sorts of snippets & comments.
At considerable expense, over a long period, a lot of interesting information was gathered.
Only due to my mother's age I decided it would probably be more detrimental to her to proceed.
I do however intend putting the documents and gathered information on public display at some point.
A lot of the motivation at the time came from 2 lawyer (SC) friends at the time, one is now a retired high court judge, the other currently a high court judge president. Them, together with my doctor friend convinced me that i had to take action.
So, you see, most people would be reluctant to put a name out like i have done, but it was done with conviction, and quite frankly I would relish a showdown in the high court.

 

[Compton_effect]

I may be wrong, but I think Tanya, the owner of the website Beingplants suffers from it.
That or a related condition. Its actually one of the reasons why she relocated to Kzn.

http://en.wikipedia.org/wiki/Fibromyalgia



Anyone know anything about it? Anyone know anyone who has it, or has it themselves?

If anyone does know anything, is it just the fibromyalgia in isolation, or are there other conditions that aggravate and/or are involved (depression, GAD, etc).

Thanks.

 

[akescpt]

wife and her cousin has this. i think the wife's is a bit mild. she only got medicaiton at that time but i havent seen her take anything in ages. it comes and goes.

her cousin's is severe though. but she doesnt always follow the diet she is supposed to. apparently the diet is the key to managing it. but its very painfull from what i understand.

 

[Alan]

about a year and a half ago i had blood tests done and it was discovered i have fibromalgia on top of the RSD, just to add to my predicament.

Not sure they have a blood test for it. Are there specific tests too help nail it down

 

[Celine]

Not sure they have a blood test for it. Are there specific tests too help nail it down

hi alan

yes it can be detected through blood tests as well. the laboratory needs to be informed as to what tests are being done for the condition and they look for it.

 

[Alan]

some info

http://beta.mnet.co.za/carteblanche/Article.aspx?Id=3847

 

[killadoob]

This is something she has been diagnosed with.

A while back I started a thread regards weed & it's possible use for relieving pain - for my mother.

Her condition remains a mystery to doctors across the country.
Many years back (30 or so) her one leg would get weak & lame-ish. After exhaustive tests by various specialists, an orthopedic surgeon informed her that if he did not perform a Laminiectomy immediately, she would never walk again.

So she went under the knife of Dr Michael Mair (yes, i putting his name right out there) in Entabeni hospital in Durban.
I have a very good & well respected Dr friend in Durban who also worked out of Entabeni, who told me that during the procedure, my mother "jumped" during surgery (never ever a good thing).
She also got a very serious infection in the surgical wound & had to be kept in isolation in the hospital.

She never walked again !!

She has been in excruciating pain ever since. She has been to every specialist you can think of, and had the usual x-rays, cat scans, mri scans & pet scans. The pain management clinic in cape Town are at a loss to what the cause may be or indeed how to manage it without the use of the most hard core drugs known to man.

So, she has been suffering this pain for ages, she is confined to a wheelchair, she has the bowel & bladder abnormalities, she is hardly able to sleep as a result of the pain, but due to the bladder problems is too terrified to use any kind of sleeping tablet. Her feet are completely numb & sometimes has tingling in the legs - and of course the constant spinal pain.
I go past her most evenings & check that she is in bed alright.
I will sit in the lounge & have a smoke while watching tv while she gets into bed.
More often than not I hear her quietly whimpering in pain & "asking god to just please let her die".

Shame dude that is terrible, you really should look into requesting strong painkillers and sleeping tablets, what is worse, lying awake in pain or wetting the bed, i know it sounds a bit wrong(well i don't think it is) but surely a diaper for adults would solve the issue and she could sleep without pain. Got to be better than lying awake in pain.

 

[copacetic]

Thanks all. Will chip in with more commentary later.

Appreciate all the responses so far.

 

[Hosehead]

I am glad he managed to help you.
In my mother's case I instructed what is pretty much the top legal firm in the country to take civil action against him.
This also involved investigators.
I at the time had studied cardiovascular perfusion so was talking to medical people all the time and getting all sorts of snippets & comments.
At considerable expense, over a long period, a lot of interesting information was gathered.
Only due to my mother's age I decided it would probably be more detrimental to her to proceed.
I do however intend putting the documents and gathered information on public display at some point.
A lot of the motivation at the time came from 2 lawyer (SC) friends at the time, one is now a retired high court judge, the other currently a high court judge president. Them, together with my doctor friend convinced me that i had to take action.
So, you see, most people would be reluctant to put a name out like i have done, but it was done with conviction, and quite frankly I would relish a showdown in the high court.

I think Doctors and other professionals have been getting away with far too much in this country that not even the HPCSA will name and shame anymore. They pulled one psychiatric finding of unprofessional conduct published in 2009 well lets say they forced Fathers for Justice to pull the judgement off their website and they buried it and the aggrieved Father in Paarl would be very happy for the world to know what happened to his daughter. I kept the original public record but follow up attempts to get info from the HPCSA proved extremely difficult. They just don't respond. Put the name out let the legal old boys club dare threaten you and you bloody well turn the tables. I still believe you should proceed as far as you can without her. That's just me. Did you see a Dr Milton at the pain clinic in Cape Town and did he help her any if you did? or was he at a loss too?

 

[Grant]

Did you see a Dr Milton at the pain clinic in Cape Town and did he help her any if you did? or was he at a loss too?

A neurosurgeon has been trying to pin point the actual source of the pain. Until that is established, the pain management clinic say they are unable to plan any course of treatment.

And my mother has pretty much given up.
To go anywhere, she has to be taken downstairs in the wheelchair, I have to pick her up out of it & put her in the car. Then at the hospital & have to pick her up out of the car & back into the wheelchair then off to the doctors rooms.
She is terrified of needing to go to the toilet. Even though we all assume there are toilets for the disabled, the grab-handles / bars need to be in different places to suit different people's requirements.

What I have found, that in the past, doctors used to close ranks around each other. That is not so much the case anymore. Each one seems more afraid the next one is going to "chuck them under the bus", probably in an effort to avoid cross examination under oath in court.

 

[Hosehead]

probably in an effort to avoid cross examination under oath in court.

Anything to avoid going to Court, That's the sad truth. And when you subpoena them you are faced with the possibillity they won't cooperate by not recalling, and they'll charge a whole days worth of missed work to you even if it's their usual golf day. Poor Mother -perhaps you could secure her time release Jurnista tablets. They last 24 hours a dose.

 

[RiaX]

http://en.wikipedia.org/wiki/Fibromyalgia



Anyone know anything about it? Anyone know anyone who has it, or has it themselves?

If anyone does know anything, is it just the fibromyalgia in isolation, or are there other conditions that aggravate and/or are involved (depression, GAD, etc).

Thanks.

Its pain this is a lazy diagnosis. They usually put it down if they dont know the cause of pain and they not bothered to look for it because its not life threatening or acute

When I was an intern the prof of orthopedics told me this when i asked about it and i quote

Its a stupid diagnosis

lol

 

[copacetic]

Its pain this is a lazy diagnosis. They usually put it down if they dont know the cause of pain and they not bothered to look for it because its not life threatening or acute

When I was an intern the prof of orthopedics told me this when i asked about it and i quote

Its a stupid diagnosis

lol

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).

 

[Grant]

Poor Mother -perhaps you could secure her time release Jurnista tablets. They last 24 hours a dose.

Will try find out about them.
She has cardiac issues as well & required a stent to be inserted last year.

Quite frankly, I am certain she would relish a fatal heart attack if she were afforded few last pain free months in her life prior to it.

 

[Celine]

yes grantza, try the jurnista tablets. i've had them and they are very good.