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Fibromyalgia as dysautanomia?

Shell

Senior Member
Messages
477
Location
England
I have just read this article by Dr Martinez-Lavin a cardiologist who makes the interesting suggestion that fibro is a form of autonomic dysfunction.
Anyone have thoughts on this or know of any studies or research?
I am wondering if it would explain the mast cell dysfunction findings and the high incidence of heart problems with those of us with FM as a primary dx. There's some anecdotal evidence that the biggest cause of death in FM patients is sudden heart attack or stroke.
THIS PAPER says more on it

I have to say that this seems to make sense to me, but I wonder if that's just because I so very much would like to have an easy to grasp understanding of the what the heck is happening to me.
Any thoughts?
 

xks201

Senior Member
Messages
740
definitely. but lots of things can cause autonomic dysregulation...genes...hypovolemia...stress/burnout. that is the trick to finding out how to fix it.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Ive no idea about FM but I know that autonomic dysfunction often causes bowel dysfunction hence IBS issues and IBS is a very common coexisting thing which often happens in FM. So I guess FM being maybe some kind of autonomic disorder could make sense.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I have just read this article by Dr Martinez-Lavin a cardiologist who makes the interesting suggestion that fibro is a form of autonomic dysfunction.
Anyone have thoughts on this or know of any studies or research?
I am wondering if it would explain the mast cell dysfunction findings and the high incidence of heart problems with those of us with FM as a primary dx. There's some anecdotal evidence that the biggest cause of death in FM patients is sudden heart attack or stroke.
THIS PAPER says more on it

I have to say that this seems to make sense to me, but I wonder if that's just because I so very much would like to have an easy to grasp understanding of the what the heck is happening to me.
Any thoughts?

Hey Shell , you miihgt be interested in the thread I created on another part of the site when I did nnot know about this OI POTS section
http://forums.phoenixrising.me/inde...rome-stretchy-veins.20351/page-13#post-320077

would love to get your comments and feedback on it

funny all of my family seem to die of strokes and hart attacks - I have ME but not FM, and amny of may family members have it too - most undiagnosed, many dead,

cheers,
Ally
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Hey Shell ,

you might be interested in the thread I created on another part of the site when I did nnot know about this OI POTS section. Great minds,,,eh

http://forums.phoenixrising.me/inde...rome-stretchy-veins.20351/page-13#post-320077

would love to get your comments and feedback on it there or we could try an move the post here

funny all of my family seem to die of strokes and hart attacks - I have ME but not FM, and ,many of my family members have/had it too - most undiagnosed, many dead,

cheers,
Ally
http://forums.phoenixrising.me/inde...rome-stretchy-veins.20351/page-13#post-320077
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I have just read this article by Dr Martinez-Lavin a cardiologist who makes the interesting suggestion that fibro is a form of autonomic dysfunction.
Anyone have thoughts on this or know of any studies or research?
I am wondering if it would explain the mast cell dysfunction findings and the high incidence of heart problems with those of us with FM as a primary dx. There's some anecdotal evidence that the biggest cause of death in FM patients is sudden heart attack or stroke.
THIS PAPER says more on it

Any thoughts?
your link to the paper did not work for me shell, could you re-post it please.
thanks
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
definitely. but lots of things can cause autonomic dysregulation...genes...hypovolemia...stress/burnout. that is the trick to finding out how to fix it.

I think if you find the cause though first a fix will come later.

Though aoutologous stem cell tranplants from abdo fat seem to fix many things without us understanding fully why they do. It is now boing treid for ME ... see post on the Not Crazy forum.
I wonder if the forced inactivity we suffer leads to type 2 diabeties, weight gain and then stroke and heart attack as the result of that.
 

Shell

Senior Member
Messages
477
Location
England
Fmpartnership.org where I got the papers from seems to have taken everything down while they re-vamp their website. I'll check it out again after Christmas and see if they've put it up again. If not, I'll see if I can find it elsewhere.
In a crash right now - pretty yuk - so not up to much.
I'll get back to this.
Sorry for the delay.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I have just read this article by Dr Martinez-Lavin a cardiologist who makes the interesting suggestion that fibro is a form of autonomic dysfunction.
Anyone have thoughts on this or know of any studies or research?
I am wondering if it would explain the mast cell dysfunction findings and the high incidence of heart problems with those of us with FM as a primary dx. There's some anecdotal evidence that the biggest cause of death in FM patients is sudden heart attack or stroke.
THIS PAPER says more on it

I have to say that this seems to make sense to me, but I wonder if that's just because I so very much would like to have an easy to grasp understanding of the what the heck is happening to me.
Any thoughts?

Hi Shell,

intersting topic indeed but the links do not open for me; would you be able to re-post if you still have the article please.
Thanks
Ally
 
Messages
2,562
Location
US
I believe strongly that the same causes of FM also cause dysautonomia, so they are very commonly together, but I feel that someone could have FM with varying levels of dysautonomia. Or dysautonomia with varying levels of FM, or no FM.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
definitely. but lots of things can cause autonomic dysregulation...genes...hypovolemia...stress/burnout. that is the trick to finding out how to fix it.


I disagree, I think you need to know the cause first - or a t least it helps

eg hypvolaemia - low blood volume would be quite a different cause from defective or stretchy veins and each would require a different treatment to cure it
 

Shell

Senior Member
Messages
477
Location
England
Found the one paper on the Wayback machine HERE IT IS

And HERE;'s the OTHER ONE thanks to the Wayback Machine as well.

Happy Christmas one and all.

Allyson I think we need to get to the root of the causes for all this too. Otherwise treatment is all in the dark.

OFFERUtah have a lot of video lectures on FM and ME/CFS

It seems rare that Mast Cells get a mention but I have a sneaky feeling that is at the base of the multitudinousity (my very own neologism!) of the disease. But as Ally suggests something caused it. I don't believe that things happen without a cause. Nothing "just happens" that's lazy balony. If we can find out what has happened we can surely start doing things - or stop doing things- that stop it happening.
Is it genetic? (my oldest son has type 1 diabetes, my third son is blind in one eye from a caterract and has very high tone in his legs causing him to walk on tiptoe all the time. My second daughter is gluten intolerant (I suspect cealiac actually but as usual can't get the proper dx tests done for her). That's 3 out of 6 of my children with unusual things wrong.
Doctors are incapable of taking full histories these days so any familial link is never considered.
Perhaps researchers can step in where doctors no longer seem capable- and take a proper history from patients. Then maybe some answers would begin to show.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Hey Shell,

thanks so much for going to that trouble;
they can now do a simple gene test to rule out coeliac.

you go to GP for an initial blood test - mine was negative, many of these are inacurate

at a specialist clinic then a great specialist here in Aus - Dr Jason Tye-din - asked a lot of questions; thought i was non - coeliac gluten intolerant, did the blood test for the coeliac gene and found there was a 99.8 per cent chance I did NOT have the coeliac gene - so chances of me being coeliac were nebligible.


as far as family history, you may wan to wade through the post on another thread for more on that esp regarding first degree ralative and ME
Found the one paper on the Wayback machine HERE IT IS

And HERE;'s the OTHER ONE thanks to the Wayback Machine as well.

Happy Christmas one and all.

Allyson

I think we need to get to the root of the causes for all this too. Otherwise treatment is all in the dark.

OFFERUtah have a lot of video lectures on FM and ME/CFS

... I don't believe that things happen without a cause. Nothing "just happens" that's lazy balony. If we can find out what has happened we can surely start doing things - or stop doing things- that stop it happening.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Shell , It is interesting to note that Martinez says in this 2001 paper:

I am convinced that scientific evidence will eventually disprove FM non-believers. Both patients and heath care providers have to be daring and move away from the decrepit medical paradigm that views any illness without obvious structural damage as non-existent or as belonging to the realm of psychiatry.



!!! So that is what they were thinking all those years we were so ill and not getting any treatment!

And that is why some doctoers still give that weird look when they hear "cfs" !