Are migraines and headaches part of fibromyalgia? How many people with fibromyalgia get migraines?

[sunkacola]

In pubmed-studies there are only scant/slight connections: Similarities of some less defining symptoms like brain fog or inflammation as perhaps contributing to the cause of the disease. The brain fog idea reminds me of the (self-admittedly) badly constructed study claiming that I think it was about 45% of fibromites have adult ADHD, just because both have brain fog and adult ADHD criteria do not include hyperactivity.
It's not that little research is done on fibro - in 2021 almost 500 studies were published on pubmed alone - it's that this research is on a very low level, hardly bringing any results, so we still only know that we don't know much, it still remains much of a mystery, despite many efforts all over the world.

Yes, that is true.....several studies have been done, but I was not counting them because they use such a small number of participants and are so short that the information really is useless.

Also, one thing I notice that many people, even scientists, fail to take into account is that correlation is not the same as causation.

 

[Auriel]

Jaycs what’s a BCG vaccine?do you know if there was a fibro cure clinical trial I’d be tempted to volunteer , if they gave me a promise my right arm wouldn’t go up and down for 3 hours later and I wouldn’t have a creepy half grin on the left side of my face(I think it would scare people on the bus )but even then I may be tempted to do one?anyone got the number of perry mason Columbo Angela lansbury piorot? We need dectectives on the fibromyalgia case immediately!

 

[sunkacola]

Yes it’s a mystery a very “persistent”one .i gave up googling potential causes a while ago cos It ended up doing my head in cos there were too many choices . Now I’ll just google now and again to see if they’ve found a cure yet.its more psychologically healthy for me

I strongly suspect that no cure will be found for a very long time, if ever. If it were found, believe me you wouldn't have to go looking for it; it would be a headline.

but don't hold your breath for any fibro cure trials. Not enough research is even being done to allow that to happen. In part because there's no energy or funding behind fibro studies the way there is for, say, cancer or diabetes. Too many people still don't even believe fibro is a thing. And the fact that so many people have widely varying symptoms is also a factor that makes it difficult.

Medical researchers prefer to work on the big ones, the ones that will make them famous or rich, rather than the syndromes that about half the medical profession (0r more) don't even believe exists.

 

[Auriel]

It’s sad but it’s true

 

[JayCS]

Jaycs what’s a BCG vaccine?

Hi Auriel, it's the tuberculosis vaccine (or a development of it), which has been used for 100+ years, so not that scary. EpicGenetics is a Californian company who think that part of the immune system is underdeveloped in FMS, i.e. cytokines and chemokines, esp. IL-6 and IL-8. So they offer - for 1000$+ - what they call an FM/a test, first in the US, now world wide. Medicare and some private insurers sometimes pay for it, there has been at least one study done which supports the claims and reasonably thinking people believe that it is OK for research to continue there. On the other hand the comments of many people about EpicGenetics give you the feeling that they are first and foremost in it for the money - it is pharma industry after all, take it or leave it.

do you know if there was a fibro cure clinical trial I’d be tempted to volunteer ,

Tests with the BCG vaccine are running at Mass. General Hospital. Of course you have to do the FM/a test first. "Of course" as they need the results to fit to their cytokine-idea first, plus they need it to finance further development and themselves. Results won't be coming out before 2022. There's lots you can read, e.g. on HealthRising, but I think that's it in a nutshell.
I was totally sceptical at first, but since I've read that cryotherapy and cold showering also influences cytokines I am interested, since these help me short-term a bit...

 

[Auriel]

I got lots of things to read about now with this new information .im in Britain mass hospital sound abroad. But ta for the info I love to learn new things

 

[JayCS]

mass hospital sound abroad

Yep, dead right there: other side of the globe from us... ;-) There is some interesting FM-research going on in I believe somewhere near Sheffield tho... Ain't easy... I'm concentrating more on being my own guinea pig.

 

[Auriel]

Me too!

 

[squaregirl]

@Auriel thanks for coming back on to see if I was still around to talk more about this subject. I just want to be sure I can collect as much information about fibro so I can address it with a functional medicine doctor. The neurologist and other specialists pretty much don't acknowledge fibro and even my GP acknowledged she was not taught anything about it but will help me seek treatment etc. I'm currently learning that being my own advocate means reading a ton and making sure I get around the right practitioners. Anyway thanks for your reply and I hope you continue managing your fibro as best you can.

 

[Jemima]

A

@uhuru are fibromyalgia and autism connected ?i filled questionnaires in months ago and a got a reply from the integrated team and the more I’ve spoke to them the more it seems a possibility I may have autism I’m waiting for my proper diagnosis it’s been put on hold due to outbreak, but yes migraines are a part of it.

There's quite an interesting article on the Psychology Today website from 2011 called Is Autism Related to CFS and Fibromyalgia? The article discussed the value of L-Carnitine to treat all three conditions. It doesn't look as if much research has been done on this particular overlap recently, from what I can see.

 

[Auriel]

Hi squaregirl and jemima I’ve got L-carnitine and lipotic something or other in the cupboard pretty sure I bought from the health shop I just can’t remember why I was given them, anyway couple days ago I ordered something called heal n soothe I saw it in a YouTube ad by dr paris it’s suppose to reduce fibrin and it’s got enzymes in it that lessen after the age of 27 (I never order anything online) but I wanted to try it,so I’ll let everyone know if it does anything good

 

[Jemima]

Hi squaregirl and jemima I’ve got L-carnitine and lipotic something or other in the cupboard pretty sure I bought from the health shop I just can’t remember why I was given them, anyway couple days ago I ordered something called heal n soothe I saw it in a YouTube ad by dr paris it’s suppose to reduce fibrin and it’s got enzymes in it that lessen after the age of 27 (I never order anything online) but I wanted to try it,so I’ll let everyone know if it does anything good

If it's Alpha Lipoic Acid and L-Carnatine, you probably picked those up coming at fibro from the mitochondrial function angle - both assist with ATP production (energy!) in cells.

 

[Auriel]

Probably was that does anyone know can calm my nervous system I feel like it’s out of whack I know it the consequences of a group of narcissistic /sociopathic/psychopathic group of men what they did and the reprocussions of it I don’t want to take cannabis but anyone been through different types of abuses will know how I feel , the fact that pubs are open and everyone’s out in gangs is triggering my nervous system and fibro a beaut .i take sertraline 100mgs right now it’s not helping any advice be amazing

 

[Jemima]

Probably was that does anyone know can calm my nervous system I feel like it’s out of whack I know it the consequences of a group of narcissistic /sociopathic/psychopathic group of men what they did and the reprocussions of it I don’t want to take cannabis but anyone been through different types of abuses will know how I feel , the fact that pubs are open and everyone’s out in gangs is triggering my nervous system and fibro a beaut .i take sertraline 100mgs right now it’s not helping any advice be amazing

Hi Auriel,

I'm also one who doesn't really feel comfortable with cannabis for my own personal reasons, so I get where you're coming from. I can also relate to having battled through a huge impact of damaging people in my life, and the horrible lingering problems that can be left behind. I've taken just about every antidepressant out there at some point or another, including sertraline - all gave me side effects eventually!

The best advice I can give is to take a really holistic approach to your healing. For me, it's taken a realllly gradual process over years of seeing various therapists (CBT, hypno, and NLP helped for me), developing lifestyle changes that allowed my brain to mend, healthy body-nourishing habits, meditation, building a support network, and finding the right supplements to start to feel better. And that's all while developing fibro, so the struggle is, as you know, very real! It's far from perfect, but I've grown a lot stronger and found a positive core within myself that I can (mostly) hold onto when I'm having a rough period.

I'm sorry you're having a hard time with people coming out after covid. Perhaps try to listen to your instincts, and give yourself the space to readjust as life changes once again. You can always talk to your doc about other medication options if that feels like the right thing to explore. I hope everything gets easier for you soon.

 

[Auriel]

Thanks Jemima my dr is good swe gave 3 but I only see one cos she’s nice and knows things that’s happened to me i know I attracted these people cos I’m their opposite and because I was trained growing up to accept behaviour and blame myself for them I used to see good in everyone but some people just prey and blame shift .ill be ok I’ll try everything you said I just get a little wobbly now and again.i so wish the forum members lived by me