Everyone With Fibromyalgia...

[tarnalberry]

and I totally agree with you that getting rid of the underlying cause will not always resolve the problems. The body also needs to be balanced....this means that changes that were done to the biochemistry need to be identified and corrected. Alot can go wrong and it doesnt always resolve on its own.

While we may not have the same vision of the details of the background (and who does ), I think this point of agreement is something that should be brought more to the forefront. My concern is that when one says "the root cause needs to be found", our society of quick-fixes says "oh, once I find the root cause, I'll be better", which isn't necessarily the case.

I'm fairly confident, in my case, for instance, that my fibro isn't caused by an underlying infection, toxicity, or intolerance on top of a genetic predisposition. The signs point to prolonged, intense, mental stress overload combined with dysthymia. Great way to burn out the parasympathetic nervous system. I wouldn't say that it was easy to get that "label" either - a number of months of testing went into it first. Stress can make you that legitimately sick, even though we tend to still have the attitude, "no, it has to be caused by something tangible".

[Calicoe]

Interesting. I'll have to think about this differently, because I've had a very stressful life, especially over the last six years, which is when I got sick. And, I've always been the "hyper" type with body shakes and tension held in the body for no reason, which could easily be described as surges.

[Rachel--24]

While we may not have the same vision of the details of the background (and who does ), I think this point of agreement is something that should be brought more to the forefront. My concern is that when one says "the root cause needs to be found", our society of quick-fixes says "oh, once I find the root cause, I'll be better", which isn't necessarily the case.

While there are some people who do think that finding the root cause is a "quick fix" this is not the message that I want to convey in my posts. The symptoms of chronic illness are not usually caused by one underlying factor...but rather a multitude of problems. When one thing goes wrong it can affect every part of the body...when there is one imbalance....it can lead to additional imbalances and dysfunction. One stressor leads to another....leads to another...etc. etc.

Its not always easy to correct the situation...and in my opinion focusing on *one* underlying factor is often the biggest mistake we can make.

However, NOT finding the root cause ensures that health will not be restored. The only people that I've seen recover from conditions such as Fibro....are the ones who have identified a root cause. So...it is treatable but it takes time, and effort, and very good Dr.'s....and unforunately it does take money. These are the factors which get in the way of recovery.

Nothing is going to come easy....we dont ever get sick overnight (even if it sometimes seems that way) and we definately dont get better overnight either.

My Dr.'s have never led me to believe that recovery would be quick, easy, or without complication. They've never gave me the impression that there would be a "quick fix" once the underlying issues were identified. I've always understood that I'm dealing with multiple issues....every patient with these types of chronic symptoms is dealing with multiple issues. I havent met anyone yet who isnt....and neither have my Dr.'s.

I wouldn't say that it was easy to get that "label" either - a number of months of testing went into it first.

Sometimes its hard to get *any* diagnosis. however, in comparison to Celiac....Fibro. is much more readily diagnosed. Considering that there are tests available for making the Celiac diagnosis...and so far no lab test is available for diagnosing Fibro.....it seems that Dr.'s are coming to the conclusion of Fibro. rather than taking the time to rule out other conditions. Same story with Lyme Disease...which presents with symptoms identical to Fibromyalgia.

Stress can make you that legitimately sick, even though we tend to still have the attitude, "no, it has to be caused by something tangible".

I agree 100%....stress is a MAJOR factor in the development of chronic disease symptoms. There is no doubt that stress plays a huge role...many people can link stress to the onset of symptoms (myself included). The worst stress is chronic stress...when the body is burdened by emotional stress for an extended period of time.

Stress can be just as damaging as a "tangible" toxin or any of the other stressors I've mentioned in the past. BUT....just like these other factors stress leads to ADDITIONAL stressors....so once again...it comes down to the body becoming heavily burdened by toxicity (from many sources). Whatever the source of stress (whether its emotional or physical)....its always going to make it more difficult for the immune system to handle additional stressors and this is how things begin to pile up.

Stress weakens the immune system...thus leaving us more vulnerable to other factors that may not be a threat if not for the continued burden placed on the immune system. This includes an increased susceptibility to infections and an increased susceptibility to toxins.

So when we put ourselves in a state of chronic stress...we are at the same time placing ourselves at high risk for other factors which may NOT go away once the period of stress is over. All of these factors play a role in creating the imbalances which lead to symptoms. Eventually the immune system loses its ability to handle all of it.

An example of this is chronic Lyme disease. A large percentage of people will test positive for Lyme but are asymptomatic. This means that their immune system is capable of keeping the bacteria in check. However, being an opportunistic organism...the bacteria can gain the upper hand while a person is burdened by additional stressors. One of the most common triggers for the onset of symptoms is stress. A person becomes extremely vulnerable to underlying issues during times of stress.

Another thing to point out is that chronic lyme is never *just* about Lyme....I dont know of any cases where additional infections and heavy metals are not factors which also require treatment to effectively get the bacteria under control. A person who is under chronic stress will have a very tough time eliminating these issues....the burden on the immune system is too high.

"Multifactorial" is the key word. The body breaks down because the burden gets too high. We cannot reach the point of chronic illness without having additional factors come into play. Its a guarantee that once the system is compromised there will be other issues to deal with.

Stress throws the body's metabolism out of balance causing an overproduction of stress hormones that need to be broken down and eliminated by the body. Continual stress from physical, mental or emotional sources overburdens our excretion systems and allows for the gradual build up of toxins in our organs. The effects are cumulative on our bodies.

[Calicoe]

I learned something from both of you guys, today. You have me thinking about this a little differently, so thanks.

[AliB]

Just throwing my 5 eggs into the pot..........

I believe that that Fibromyalgia, like CFS, like Migraines, like MS, like............is just yet another manifestation of food intolerances whether caused by heavy metals, industrial pollution, chemical contaminants, gluten et al.

We are all different - the effects of gluten intolerance for instance can manifest in so many different ways in so many different people, whatever its cause.

I too have some similar symptoms to those with Fibro, yet I don't have it - for instance, I too have NEVER gone into the REM sleep stage. I have always awoken feeling as if I have been working all night yet I do not have the joint pain, well not enough to warrant any FM diagnosis, yet I am very gluten intolerant.

Interestingly, my husband has medically diagnosed Fibromyalgia. He has been struggling with it for years and would typically end up in bed at least every 2 weeks for at least 3 or 4 days, not only in pain, but with debilitating exhaustion, full of anger and frustration. He would jump at the merest noise or movement and the brain fog was like he was drugged.

At the end of Jan we both went gluten-free. He joined me as he hates being left out, bless him. He was a bit longer changing over and would nosh a bit of gluten food here and there but over the last 7 or 8 weeks or so he has been pretty tight on it.

Last week he fell off the wagon. We had some cake left over from a do (stupid me, I should have put it in the bin, but I brought it home). He had that, then on the Friday he had Fish and Chips (with gluten batter) and on Sunday we went out for a meal and he had a normal curry. I don't think he realised what effect it would have.

Monday morning he woke up the worst I have seen him for a long time. He was in great pain, could hardly move, and was incredibly depressed and frustrated. I was convinced it was the gluten but he was having none of it. I got him back on the wagon straight away, and now a week later he is a different person again.

Without gluten his brain fog goes away and his memory comes back. He is alert and bright and clear-headed. Whilst he was gluten-free over the previous weeks he did not have the debilitating pain nor was bedridden at any time. Two weeks ago he was out in the garden knocking down a large stone wall! I wish I had that energy!

Whether his FM is the same as other people's, I haven't a clue, but I am convinced that gluten is undoubtedly a major trigger. He has had joint problems all his life - he remembers not being able to push a kids scooter as a child as it made his back ache. When 21 he ended up in traction after lifting a motorbike onto its stand. He had his knee cartilages out when young, was diagnosed with Osteo-A in his 30's, Spondylosis in his 40's and FM in his 50's.

He seems to have spent his entire life in a black mood under a cloud - until now. We might never have discovered it if I hadn't had to go gluten-free, but thanks to gluten-free I have a new husband!

[frec]

While we may not have the same vision of the details of the background (and who does ), I think this point of agreement is something that should be brought more to the forefront. My concern is that when one says "the root cause needs to be found", our society of quick-fixes says "oh, once I find the root cause, I'll be better", which isn't necessarily the case.

I'm fairly confident, in my case, for instance, that my fibro isn't caused by an underlying infection, toxicity, or intolerance on top of a genetic predisposition. The signs point to prolonged, intense, mental stress overload combined with dysthymia. Great way to burn out the parasympathetic nervous system. I wouldn't say that it was easy to get that "label" either - a number of months of testing went into it first. Stress can make you that legitimately sick, even though we tend to still have the attitude, "no, it has to be caused by something tangible".

I have been following this discussion with great interest since I was just diagnosed with fibromyalgia. My rheumatologist actually said, "You won't need to see me any more--there's nothing I can do for you. Get some pain meds from your regular doctor if you need them." Argh. Anyway, I totally agree about addressing the root cause(s) and mine seems to have been much like yours, tarnalberry. I was diagnosed with celiac the same week I injured my back--so chronic pain, nutritional/absorption problems, family disasters, depression...cook for 6 years and you have a perfect recipe for fibromyalgia!

[Aleshia]

I think you misunderstood the post.

She was not saying that people are making up their illness. That was not the point she was making.

She was stating that the symptoms of Fibro are CAUSED by something which has not been diagnosed....that people should dig deeper and look for that underlying cause.

I agree.

You actually posted something very similar to what she was saying (from your Dr.).

Personally, I believe that in ALL cases of fibro. there is an underlying disease condition.....something that is actually identifiable and treatable.

"Researchers dont know what causes Fibromyalgia...."

I believe that it is related to other diseases and can either be triggered by them or trigger them. but FM is actually a disease in and of itself. its not just a syndrome or a symptom

They dont know what causes IBS either...yet they give out the diagnosis and they hand out the prescriptions to "treat" the symptoms of it. I think we can all agree that IBS isnt a "real" diagnosis....its a label given to a cluster of symptoms for which there is no known cause. If one chooses to dig deeper they can identify the cause of those symptoms....whether its Celiac, another food intolerance, yeast overgrowth, bacteria infection, parasite.. etc.

The point is...*something* is always behind those symptoms. The body doesnt just go into a state of chronic pain for no reason. Genetics can make us more susceptible to certain things which can lead to the development of disease....however, I do not believe that symptoms can just "appear" without cause.

I cant even begin to count the number of people that I know of who were originally diagnosed with Fibro and then later correctly diagnosed with the true cause of their physical pain. Something that they can actually treat and recover from.

Even though I could have met the "criteria" for a diagnosis of Fibromyalgia (Dr.'s had no clue what was wrong with me, I had pain all over and all tests were normal)...I was never given that diagnosis. I never would have accepted it because deep down I knew that there was an identifiable cause for my symptoms.

[Rachel--24]

I believe that it is related to other diseases and can either be triggered by them or trigger them. but FM is actually a disease in and of itself. its not just a syndrome or a symptom

Can we really call something which has no known cause a disease in and of itself?

Does this mean we should also consider IBS to be a disease in and of itself?

For both of these conditions there *has* to be an identifiable cause.

Just because some Dr.'s cant come up with the answer doesnt mean that there isnt one. MANY people cure their Fibromyalgia once they figure out what is causing it.

[tarnalberry]

Can we really call something which has no known cause a disease in and of itself?

Does this mean we should also consider IBS to be a disease in and of itself?

For both of these conditions there *has* to be an identifiable cause.

Just because some Dr.'s cant come up with the answer doesnt mean that there isnt one. MANY people cure their Fibromyalgia once they figure out what is causing it.

yes, something with no *known* cause can be a disease, because we do not have perfect knowledge. colds are a "disease" (infection, anyway), and at one time, the cause was unknown. it's not because it wasn't a disease, but rather because we didn't have knowledge of bacteria. I'm quite sure there are plenty of other non-healthy states that we just don't know a lot about, and hence don't know the cause of - and they have a cause that is unique to known causes.

[Rachel--24]

yes, something with no *known* cause can be a disease, because we do not have perfect knowledge. colds are a "disease" (infection, anyway), and at one time, the cause was unknown. it's not because it wasn't a disease, but rather because we didn't have knowledge of bacteria. I'm quite sure there are plenty of other non-healthy states that we just don't know a lot about, and hence don't know the cause of - and they have a cause that is unique to known causes.

I can agree with this...however, in the same way that IBS is cured when the cause is found....Fibro. is also cured when the cause is found.

In both conditions the cause for symptoms is not the same for everyone. The point is that there is always *something* causing them.

If there werent so many people diagnosed with Fibromyalgia who then went on to receive ANOTHER diagnosis which resolved ALL symptoms of fibromyalgia....I might be more inclined to believe that it was a disease in and of itself.

As it stands right now there is no cure for Fibro....this is true only for those who do not know *why* they have Fibro. Plenty of people do recover. Those are the ones who were later correctly diagnosed with a cause for those symptoms.

We cant cure something when we do not understand the cause.

If Fibromyalgia were a disease in and of itself...which science hasnt yet found an answer for....then how is it possible that so many people have recovered from it by treating other issues that were diagnosed later on??

Everyone would be in the same boat if Fibromyalgia were an actual disease without any answers. Noone would recover until the disease was better understood and specific treatments were made available.

If we didnt understand that gluten was the cause of Celiac Disease people would not recover by treating other things. Noone would recover until it became clear that gluten was the cause and that the diet was the necessary treatment.

There are a significant amount of people recovering from Fibromyalgia....a condition which suppossedly has no known cause at this time. If it was a disease in and of itself I dont understand how that would be possible.

[lizard00]

Wow

I never envisioned this thread evolving into what it has become, but it has been very interesting to follow. I will say that the day I started this, I felt like crap the majority of the day. That was probably the worst though, and I haven't felt that way since. I have crazy ideas as to why, but I'm not really sure. I hadn't been glutened (to my knowledge, anyway), but all of the muscle pains were never a symptom anyway.

Part of me wonders if that was the final detox push, getting gluten and possibly other stuff finally out of my system and that's why I felt so bad. Because truly, things have just been getting better for close to a month now. Even my doctor told me she thought it was possibly another food intolerance causing the aching and fatigue. The only thing I did was cut back on dairy again. I feel much better now, so obviously she was right.

For me, when I ate dairy again, I didn't immediately feel bad. It was a build up, until it came to me feeling really horrible. Which is probably why I didn't relate the two until she said something about it. But I agree, something has to cause the pain, because your body doesn't just go into chronic pain for no reason. But as you all said before, often the answer is not obvious.

[sixtytwo]

This is what I know for sure................I WAS diagnosed by a rhumatologist with fibromyalgia and take Mobic on a daily basis for it. When I eat gluten free the whole thing is pretty much under control. When I get gluten, I get a bad flare-up of the fibro. LIKE TODAY, I hurt all over and I know it is because I have been abusing gluten, which I thought I would never do, but I did. I don't really get gastro problems that much anymore, but man, do I get fibro flares from it. I would imagine if I kept it up, then the gastro problems would kick in too. I tested as to having a gluten intolerance, not celiac disease, which is dangerous as you think you can get away with cheating here and there, but then you get reminded (like today when I am hurting so much) that you really can't cheat as it really does catch up with you in the end. I carry the gene, have a granddaughter with severe celiac disease, so I just have to realized that I need to eat gluten-free all of the time if I don't want the fibro to flare up or want to end up with full-blown celiac disease, which can happen. I am 63 years old.

Barbara

[tarnalberry]

heh... I must be the odd duck - my food intolerances don't exacerbate fibro symptoms (they cause other problems, but not specifically the distinct fibro ones). for me, fibro came four years after going gluten free, three years after going dairy free (and I really don't have accidental ingestion very often at all - two/three a year; and never intentional ingestion). this is one of the reasons I continue to suspect overlapping symptomology, rather than a lack of existence of fibro.

[mamaw]

I will chime in here too! My fibro & rosacea have both cleared up since on the gluten-free diet. I still get some minor problems but nothing like before....

mamaw

[Rachel--24]

heh... I must be the odd duck - my food intolerances don't exacerbate fibro symptoms (they cause other problems, but not specifically the distinct fibro ones). for me, fibro came four years after going gluten free, three years after going dairy free (and I really don't have accidental ingestion very often at all - two/three a year; and never intentional ingestion). this is one of the reasons I continue to suspect overlapping symptomology, rather than a lack of existence of fibro.

My Fibro. type symptoms didnt resolve while gluten-free/cf. Alot of things can flare those symptoms for me including chemicals. Probably the biggest trigger for me is high phenol foods....especially salicylates. I dont have pain all over the way I did prior to making diet changes.

The first thing to flare up for me is TMJ....then it just kind of spreads from there. I just dont ever let it get to that point anymore. Its been over 3 years since I've had to take any type of medication for pain.

[tarnalberry]

I can be fairly close to pain/fatigue free regardless of the foods that I eat (respecting other intolerances, of course), and can track my symptoms to other triggers (primarily stress and sleep patterns). I've got no empiric evidence to suggest it's a food/chemical intake for me. (That's the *really* short version of it. And I don't take pain meds - well, for fibro, I'll take them for the nasty menstrual cramps occasionally - so I'm confident that isn't affecting my data. )

[Rachel--24]

I can be fairly close to pain/fatigue free regardless of the foods that I eat (respecting other intolerances, of course), and can track my symptoms to other triggers (primarily stress and sleep patterns). I've got no empiric evidence to suggest it's a food/chemical intake for me. (That's the *really* short version of it. And I don't take pain meds - well, for fibro, I'll take them for the nasty menstrual cramps occasionally - so I'm confident that isn't affecting my data. )

Stress is a trigger for me as well. Actually, the first symptom I ever noticed (which started right after my fillings were drilled out) was an inability to handle *any* amount of stress.

I've had to really learn to manage stress and I've had to make changes in my life to reduce the amount of stress I'm exposed to. The effects for me are immediate and they are more severe than what I experience from foods. The symptoms are the same but they just hit much quicker and much harder from stress.

Thankfully, I've been really good about avoiding stress the past couple years. The bad part is that I'm less organized and tend to let things go....important thing like paying bills.

Prior to this illness I was extremely organized, totally type A, everything had to be in order and I pushed myself really hard to get things done. Now I cant do that...and now I have to let so many things go because I dont want to think about them or trigger any symptoms by dealing with anything that is even the tiniest bit stressful. I've become quite the procrastinator...totally opposite of how I used to be.

I can sometimes *feel* toxins from chemicals as they circulate through my system and trigger symptoms. It used to be pretty bad with perfumes but its improved alot this past year. I can also feel it occassionaly if I eat something that has alot of chemical ingredients.

Its the same with stress...especially if my body goes into "fight or flight" mode. The adrenaline and other chemicals produced by my body during stress will circulate....its much more noticeable than it is with the other things I just mentioned. Stress can knock me down quicker and harder than anything else.....which is why I do whatever it takes to minimize it. I've even ended friendships because I couldnt handle drama or negativity...it was affecting my health.

Anyways, I'm not sure yet if I've got it right but I've linked alot of my problems to one specific detox pathway. My Dr.'s are working with me on getting it figured out but they do think that I'm probably very close to the truth. Its not the *answer*....we already know that in my case mercury has messed me up pretty good. Theres so many things that can go wrong and the hardest part is finding those little "glitches" in the system. Once you find them you can do what is necessary to correct the problem and get things moving again.

Its like a door gets closed and things just stop functioning. You can have all of the doors open and then somewhere one of them is shut...if you can find it and open it then you can get things moving again. Sometimes there are alot of doors which need to be opened. Its very similar to Autism....alot of imbalances and dysfunction as far as the body's biochemistry goes.

So for me stress is a huge factor....mainly because I'm unable to process those chemicals which are released. The immune system can react to anything if its there in excess....even hormones, neurotransmitters...anything that overwhelms the system can trigger symptoms.

As far as I know I dont have problems with my sleep.

[Fiddle-Faddle]

This is what I know for sure................II tested as to having a gluten intolerance, not celiac disease,

Barbara

If the test you are referring to was an endoscopy/biopsy, it is entirely possible that you DO have celiac disease, rather than gluten intolerance, as the endoscopy/biopsy can rule celiac in, but it can't rule it out. And if you have one of the genes for celiac, I would bet that you do have celiac.

For many (though probably not all), gluten intolerance is just early-stage celiac.

Not that it matters much in the short run--eating gluten can have JUST as devastating consequences for gluten intolerants as it does for celiacs, no matter what the root cause.

But if there is a treatable underlying issue causing the gluten intolerance, that needs to be determined and treated.

I still believe that gluten intolerance CAN cause villi damage, regardless of genetics. Only time and research will tell us whether there is a further underlying cause of celiac (besides for genetics and gluten!)as well.

[frec]

Rachel and tarnalberry--I really appreciate this debate. Being diagnosed with fibromyalgia is kind of like being told to move to Shangri La or shake hands with Santa Claus. It's too amorphous--what do I do now? Click my heels together? It is comforting to know I am not the only person struggling with it. The only useful information I have gotten so far is from this forum.

[Avacado7]

I don't know if this will help anyone, but here goes:

I used to have excrutiating pain....legs, feet, hips, back, shoulders....

I went to Drs, allergists, chiro, naturopaths, rhumatologist, physiatrist and physio. I could not sit at the computer at night,,,cause I just "ached!" You get the picture. One specialist told me that if I didn't do something, I would end up in a wheelchair.

Then someone suggested a book. I don't know if I am allowed to mention the books name (someone can let me know). Anyhow, the premise of the book is that if we are out of alignment our muscles and joints will ache. We end up with a muscle imbalance. I have been doing the program associated with the book for a year and a half and have made great progress. My Physio is impressed! The pain is greatly reduced. However I just felt there was something else. So I went gluten-free for three weeks. Then on the Saturday I woke up aching and it just got progressively worse! It was at that point I realized I had gluten the night before. My joints felt a little like there was shredded glass in them, and my muscles were screaming!

I am realizing that the gluten problem may have created the muscle imbalance/alignment issue. Just my opinion! I googled "Gluten what it does to the body" and read that it results in deficiencies. Then I googled the deficiencies and found what could be the cause of my problems. IE: I have Schambergs. That is when the capillaries release blood just under the skin. It looks like red dots on the legs....and as the old dots disipate, they turn your leg a rust colour. Well....according to people on the Schambergs forum, their problem has disappeared when they increase their Vitamin K. Vitamin K is one of the deficiencies associated with Gluten. Another deficiency associated with the muscles aches and pains is magnesium...which affects the muscles ability to relax. This, as I said, is just my opinion. I am still in the stages of checking it out. I have only been gluten-free for a short while.

If you are wondering if your aches and pains might be a result of alignment, take a picture of yourself standing as you regularly do. From the side your ears should be over your shoulders, hips, knees and ankles. From the front, your shoulders and hips should be level. Sometimes this is hard for someone to pick out in a picture. SO...if anyone is interested in this further......just say.

Karen