Old 07-04-2017, 01:57 PM #1 (permalink)
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Default What is your own theory as to why/how you have fibro?

Hi,

I completely respect the medical community - from the many hardworking, dedicated researchers, doctors, nurses, physical therapists, psychologists, counselors etc. I am also very sure that there are teams all around the world, people who are currently devoted to finding the cause and cure for fibromyalgia, even though they themselves are probably not going through the daily hell of fibro. My total respect to them.

That said, I do think we, as experts in suffering (!), have the right to discuss what we think causes fibromyalgia, however un-academic these causes can be.

Here are my own theories;

- difficult birth after a difficult pregnancy. This is my case. I truly believe this difficult start gave me the 'weakness/proneness' virus, mentally and physically.

- sensitive personality. I am not just talking about sensitive to sounds, smells, touch, light etc. I am also talking about being very sensitive to criticism, of what the world thinks about you, disagreements/quarrels, as well as injustice, unfairness, world problems like poverty, pollution, cruelty, human rights, animal rights etc.

- experiencing all bad events like trauma's - big or small, they leave a mark behind. A healthy person finds a way to deal with them and move on. But for us, it is like every time something bad happens, this event leaves us scarred, punched real hard. Over time, these punches lead up to major physical and/or mental 'injuries'.

- that one big traumatic event - This event shocks your system so bad that there is no turning back. You were maybe surviving before, but after this trauma, there is no way of denying that you have a chronic illness and that it will never leave you. You feel it every minute of the day, every day. And now you also have to mourn for your loss - the loss of your old life. So it is double traumatic.

So do you have any theories of your own?

Thanks
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Old 07-04-2017, 03:04 PM #2 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

I'm with you vicky on all the last 3 for me..plus i think sometimes as well as that 1 big emotional trauma...some sort of accident or surgery to the body maybe also is the thing that tips it over ...for me it was a accident where i broke bones but at the same time id had years of high emotional stress and pressures and as you describe for some of us these leave imprints we carry deep down even when we seem fine and coping on the surface.

Its like bit by bit our resilience is weakened and unless we take care of ourselves or remove ourselves from high stress environments one day bam out of nowhere fibro starts!

Then that itself is soo shocking and stressful to deal with and leads to all sorts of pressures..not just the pain and fatigue to try and come to terms with..all the losses and all the relationships that suffer...when we are already mostly sensitive responsible types where not being able to do and achieve kind of hurts ourselves .... then the critism because we 'cant do' hurts on top!

I think the flight or fight response gets switched on so often and so high from our own internal response to situations that in the end it gets stuck... rewiring all our system to run like we are in a marathon even in our sleep.

I also believe if we are then subjected to more trauma our condition can get soo much worse and not return to its previous level.

I've noticed all my new symptoms that joined in over the years were ALL after a stressful events or feelings..but at this point my sympathetic nervous system kicked in hard over much less stress than when i was healthy.

Almost like panic attack that was set off by silly things like standing up for myself or even watching an emotional movie i could feel the pricking of adrenaline start to pump and not pass quickly like it should...as if the settings had all gone haywire and were sensitised and also cant reset in a normal amount of time.

In fact failure of the parasympathetic nervous system to kick in when it should.

Also a genetic component in some.

Good thread vicky.

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Old 07-04-2017, 03:57 PM #3 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

I think there's something in my medical history at the root of it. My family all have odd health things - a lot of mental health issues, food sensitivities, odd itchy bumps that appear all over our bodies (starting with grandmother) that we think is some kind of herpes simplex, migraines and a host of odd complaints. Mix it up with a bout of mono and the sensitive nature you mentioned ....
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Old 07-05-2017, 03:51 AM #4 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

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Its like bit by bit our resilience is weakened and unless we take care of ourselves or remove ourselves from high stress environments one day bam out of nowhere fibro starts!
Everything you wrote is so true! I love the word 'resilience' - it describes so much within the fibro context.

That one big trauma can indeed be a physical one as well - an accident when you are already so weakened...the healing process is either very slow or non existent. And with any physical injuries after that, we have to go through the same hell each time.

My shoulder is a great example of that. I dislocated it 3 years ago and it is still a mess. I've seen shoulder experts/doctors with all kinds of scans in 2 different countries, and they are more puzzled than I am. I had to tell them it is fibro - they just stared at me like I am a mad person. But I really believe it is fibro, it is not allowing my shoulder to heal. My body is so busy fighting fibro every day that my shoulder has just gone to the back of the priority list!!!
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Old 07-05-2017, 09:51 AM #5 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

Don't know about the difficult birth, sensitive personality, or experiencing things as trauma when they are not, because I am none of those things myself. But I do think it is pretty common for this to develop after a serious trauma, whether that be physical and/or emotional, or a whose series of real but not catastrophic traumas that become accumulative.

I think that is how it developed in me. I have, mind you, had depression all my life, but my physical health was always pretty good and I always had abundant energy. But I have had several serious traumas in my life, and while I rebounded from each one of them eventually, the last one was either too much or else the cumulative effect occurred because I have never been the same since and it has now been years.

I have had serious PTSD, have had my adrenaline gland burned out and out of whack for months, have had numerous other effects from serious and sometimes life-threatening and prolonged trauma. But I always rebounded. For whatever reason, I have not done so this time and instead have apparently developed fibro.

Even so, I think that there is always a chance that, despite what the doctors say, things could get better.

I honestly think that attitude is important. Don't get me wrong here. It's not that I buy into the "you create your own reality" thing, which is BS and just blames the victim. But I do think that if I, for instance, were not so depressed these days it would mean I'd get out and do more, be more active, which would definitely help with my fibro. Or, at least I think it would. So, even though it is much easier said than done (!) I think the people who can maintain a positive outlook and be active will suffer less from this, and may very well be much less likely to develop it in the first place.
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Old 07-05-2017, 01:44 PM #6 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

This is an interesting question, and one I get asked whenever I tell someone I have fibro. The real answer is that I have no idea, but there are a few theories.

Theory #1: A bad run-in with gluten triggered it.
I can trace my "random aches/old-lady days" back at least 4 years. With Celiac, eating gluten damages the villi in your intestines and prevents your body from absorbing nutrience properly, which can have a whole list of consequences short and long term. It's essentially a system-wide trauma. I'm very strict with my diet, but it just takes that one time you slip up and forget to ask about the fryer... Anyway, I had a bad glutening about 4 years ago that took over a month to get over. After that I started having occasional random achy days, but I figured it was another weirdo Celiac thing. Last year I had another slip up while on vacation (combined with too many drinkies and walking a million miles), which is when I think the Fibro started kicking in. The achy days became more frequent, and didn't stop even after I'd gotten over the glutening.

Theory #2 - One auto-immune disorder often means you'll end up with another.
The medical/scientific community still knows so little about Fibromyalgia and what it's root causes might be. I would not be at all surprised that they eventually determine it to be an auto-immune condition of some sort. It's definitely auto-immune-like, what with your body overreacting to stimuli that should be benign to anyone else. If you have one auto-immune condition then you're at a much higher risk of having another (Celiac, thyroid issues, diabetes, rheumatoid arthritis, etc). If Fibromyalgia turns out to be auto-immune, then that would make sense.

Theory #3 - Is my brain not wired right?
So, Fibromyalgia is a neurological condition, which means something in our brains isn't processing pain properly, either getting too much or not enough stimuli, overreacting to touch/actions/injuries when most people would be fine. So, is there a part of our brain that is defective? or is it more of a hormonal/neurotransmitter thing? If it's a structural defect, were we born with it? did it develop over time? an injury? Could the "trauma" have caused damage to our brains? I happen to also have a small aneurysm in my brain (tiny, nothing to worry about, my doctor says), but could something like that, a bubble in certain areas of your brain cause problems? (probably not at that small a size, but who knows). This is my "I have no idea how brains work" crazy theory.

I'm also one of those overly sensitive people with anxiety issues, always have been. Looking back part of that anxiety was likely caused or worsened by Celiac (my anxiety first ramped up in high school, same time I had iron anemia, which if Celiac had been a thing on anyone's radar at the time would have been reason to be tested for it). It also got worse the past couple years or so. I saw a CBT therapist for a while, and slowly figured out that my anxiety was me overreacting to physical symptoms (hi, Fibro!) which in turn only made them worse. Do I think anxiety/over-sensitivity can trigger fibromyalgia: not so sure, but I do think that anxiety can definitely be a symptom, and hinder our ability to deal with the pain.

Anyway, that's my 5 cents. Still so much to learn about this fuggin disease

Last edited by Pegleg84 : 07-05-2017 at 01:55 PM
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Old 07-05-2017, 06:55 PM #7 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

Too much stress over long periods of time. PTSD from bad relationships. Over achieving at work by trying to hard to do the best job possible. Anxiety and sensitive and caring too much to the point it wore me out and yet the ones I cared about just took advantage of me. The cause could be a number of things, but what makes me wonder about this condition is that it's not a random condition but is spread world wide.

Is it food or water, or the air we breathe. Why not one area of the country or world?? Makes you wonder don't it.
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Old 07-06-2017, 03:51 AM #8 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

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Theory #2 - If Fibromyalgia turns out to be auto-immune, then that would make sense.

Theory #3 - Is my brain not wired right?
I also think, these are theories that should seriously be looked into. There is definitely something off with our brains - that's for sure. I hope there is a study happening right now where they are comparing brain scans of patients with fibro.

I also think your gluten intolerance takes away your body's ability to fight back. I tried going gluten-free 2 months ago, invested lots of money in it, but the diet did not make a difference in any way. Same pain levels, same IBS, same fatigue. But it is something everyone should test and see for themselves. I experienced first hand how difficult it is to go gluten-free, so I really feel for you.The added stress can never be good.
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Old 07-06-2017, 06:33 AM #9 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

VtC, I like this thread and want to contribute. But I just hit a wall which sometimes happens and I feel like closing my eye's a taking 40 winks or more. So I'm going to put the charger on my laptop, recline in the LazyBoy and come back in a few with some fresh idea's and old theories...maybe I will have a nice dream in the meantime.

BBS

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Old 07-06-2017, 09:07 AM #10 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

Vicky, it is very possible that you are not at all gluten-intolerant, and that is why it made no difference. However, the naturopathic doctor who told me to go gluten-free told me it can take up to six months to really feel the results.

Mind you, I felt a difference in two weeks. But the problems that going gluten free changed for me were not pain-related, but rather consistent diarrhea and constant 24-7-365 low grade nausea, which I had had for over 20 years.

Just want to say, as well, a comment on it being hard to go gluten free.

I think it would depend on where you live, in part, in terms of what is available to eat. For me, the first year was a challenge because I was literally addicted to bread - it was my hands-down favorite thing to eat and I ate a lot every day. I actually craved bread for months. But, once I got over that it has been really, really easy.

You can spend a whole lot of money buying gluten-free things, but I don't, and you don't have to. I just don't eat bread or baked goods any more at all, except for special occasions (gluten free) or if someone offers me a gluten-free item. I no longer ever want bread or baked things to eat. I was out once, and my companion ordered a delicious looking chocolate cake. Someone at the table said to me, how can you resist that?? I said, it's easy. If I ate that I would be sick for at least two days, so it has no appeal at all for me!

For dessert I eat fruit or all-natural ice cream. If you really like gluten-free baked things you can easily make your own gluten-free baking mix, out of very cheap flours you can get at an Asian food store, and use it 1:1. You can make this at about 1/4 to 1/3 the cost of the mixes that are so expensive to buy. Make cobblers or crisp instead of pie crust, that kind of thing.

The only tricky thing is restaurants. You have to be very careful there. I very rarely eat out but when I do I eat nothing fried or breaded, no creamy soups, nothing with any kind of sauce on it. There is still a lot left you can eat. But it's dangerous to trust the server to know what is in the food; often they don't.

I think going gluten-free only feels hard at first.
I have been gluten-free for over 4 years now and think nothing of it any more! And, boy is it ever worth it!!
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Old 07-06-2017, 10:59 AM #11 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

Hi,

I agree with a lot of u.I believe it can be a combination of several things.I think mainly the nervous system is affected negatively by a virus, infection or trauma that shocks the system and causes it to malfunction.

Making the Fibro person more prone to stress and decreasing the function of the immune system.I also believe it changes the way our cells function in our body (Midichondria)decreasing our energy in our bodies.But whatever it is.I think it can be helped.
I'm not giving up on a medication that scientist will come up with.I believe in our life there will be a helpful solution.

I also have been an over sensitive person and overachieving.Never liked when somebody didn't put their whole effort into things.That was always my personality.I always cared for others and was compassionate since I can remember.People and animals.

I really miss my energetic side.Ivuse to run around non- stop and loved being that way.In the end maybe that it what brought me down.But on a good day I'll sometimes get about 50 percent of that back, and it feels good.Have to be thankful that I could be worse off.And I feel bad for others that are.

Have a better day!


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Old 07-06-2017, 11:01 AM #12 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

A note on going gluten free: I can't emphasise this enough: GET TESTED FOR CELIAC DISEASE FIRST! Tests are only accurate if you are still eating gluten regularly. Symptoms of Celiac and Fibromyalgia often overlap (fatigue, aches, anxiety, IBS, etc etc). You could have both conditions, or could discover a lot of your fibro symptoms are actually Celiac symptoms. Of course, if your results are negative, you can still go GF.

If you are on the diet, ditto on what Sunkacola said: processed gluten free "substitute" foods like breads and such are no better for your than the gluteny ones. Stick to naturally GF "whole" foods and minimal processed stuff. For me, anything baked is a treat (we have a few good GF bakeries in my city). Eating less processed foods is good for everyone in my opinion. I've been GF for 8 years and it's just 2nd nature to me now. My health literally depends on it.

Anyway, back to the "why do we have this" theories, my mom (bless her heart) sent me a link to some dubious website with dubious sources but I did manage to find an origin to it. In 2013 some company did an (industry funded) study that suggested Fibro might have more to do with nerve endings around our blood vessels or some such. Seems to me that it was more of an observation that required further study, but couldn't find any follow-up or similar studies, so I'd put it in the dead-end idea pile. As one commenter said "Until I see it in the New England Journal of Medicine, I won't believe any 'cause found' claims". Me too!

It's good to try to theorise what triggered our Fibro in the first place, but it's especially important that doctors and scientists continue studying this thing to find out the actual physiological cause. It could mean better testing and treatments in the future.
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Old 07-06-2017, 12:34 PM #13 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

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Vicky, it is very possible that you are not at all gluten-intolerant, and that is why it made no difference. However, the naturopathic doctor who told me to go gluten-free told me it can take up to six months to really feel the results.

I think it would depend on where you live, in part, in terms of what is available to eat.
I don't live in the 'Western' world, so yes, finding gluten-free goods was a nightmare. And once I did, they were very expensive and often really horrible to eat. I tried it for about 6 weeks, I was hoping it would help with my IBS as well (morning cramps/diarrhea). I wish I could've given it a longer try, but I really could not.

I am also vegan, and we don't have vegan cheeses/burgers/cookies/cakes/ready-to-eat meals etc. here, so I really have to cook everything myself. I am used to it, so I can't complain. But with fibro, cooking can be a true hell. Chopping veggies is a task I have to sacrifice my whole day for, even on a good day. I also love bread and pasta because they are easy to make. And as you can imagine, with fibro, I often need easy meals. I'm afraid I don't see myself giving those up anytime soon

But I am glad it worked great for you.
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Old 07-06-2017, 12:36 PM #14 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

I read that too, Pegleg84, something about more nerve endings in the hands of fibro sufferers than your average jo. I've also read about a doc whose treating it with antivirals - thinks it's connected to herpes simplex - and anti-inflammatories. I'm kind of thinking it's like a lot of things - not one particular cause, but a sensitive body with a genetic predisposition to illness that goes crazy when exposed a cocktail of things ... kind of the snowball rolling down the hill ... poor nutrient absorption, gut problems, viruses, illness, stress, anxiety, etc. A cycle of things that is very difficult to pin down.
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Old 07-07-2017, 12:32 AM #15 (permalink)
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Default Re: What is your own theory as to why/how you have fibro?

I think this thread proves Marvis is spot on and its a combination and a 'different' combination for each of us and why on top of limited resources put into research its so hard to treat and even harder to establish a cause.

I for one would have thought it impossible before suffering from this disease to believe it was possible for human to be so well and active and then suddenly be in so much pain and many other symptoms and not one test shows anything is wrong.

I already had a friend with fibro before it hit me and i am glad to say i empathised and was very kind to her but could i have got close to understanding what she was truly going through...no i really couldn't have!

She used to potter at things and spend a lot of time on the couch..be wiped out for the day after walking the dog but when we were chatting or she made cups of tea and served up cake she had baked i could never have imagined the effort and pain she was silently going through.

Since i have had fibro amongst my circle 2 others have come down with fibro and ME...both women my age and with families and high achieving sensitive caring types. The mystery rumbles on!
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