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Why is it important for us to know what causes Fibromyalgia?

Why I decided to write this article

I would like to explain to people why I think the question “What causes Fibromyalgia?” is such an important one to ask. I also feel it is very hard for people who do not have Fibromyalgia to understand why this question is so important to people with Fibromyalgia. I would also like to think this article could help bridge those gaps and help Fibromyalgia patients to explain why this question is so important to them.

Background

This is a question I have been considering for some time, on and off. Today I had a conversation with a Fibromyalgia patient in her twenties who I could really identify with, as I was also diagnosed with Fibromyalgia in my twenties. This conversation got me thinking about the question again, why is it important for us to know what causes Fibromyalgia?

As you can probably imagine, the answer isn’t straightforward, there is no one “all encompassing” reason but rather a number of, no less legitimate, reasons.

Human Nature

It is in our very nature to be curious, no matter what you believe about the creation of human kind you soon realise that our curiosity is very important to us, humans. I also do not believe this is entirely accidental, yes some more than others need to find the answers to everything, but rarely do you come across a person who has never asked the question “why?” in their lifetime. I am, by nature, an analytical thinker. In psychology this element is often measured alongside other characteristics to analyse our personalities. It is not simply a question of “are you a thinker or not?” But rather where are you along the scale: Do you think a little? Do you think a lot? The very fact this element is on a scale rather than a simple, yes, or no, shows us we all have this element in our personality and is part of what we consider to be human nature.

So why is it an important part of Human Nature?

As humans we have had a very successful dominance on our planet, we can often be considered to be at the top of the food chain, or at the least threat of extinction. No matter what you believe about our creation, selection or evolution we are sure to agree that as humans we are survivors. I don’t want to lose people here thinking this is a post about psychology but it won’t be the only time I refer to psychology in this article.

As survivors we need to recognise patterns, quite simply, if I do A it harms me, if I do B it benefits me. We are programmed to recognise this and to B not A. This very basic concept has ensured our survival as a species so far. When it comes to our health it is very important to know what is good for us and what is bad for us, as the potential penalty is so high. It is only recently that we have developed medicine and we are starting to leave the more complex analysis of health issues to a group of people we hold in high regard, doctors. For most of our time on the planet however this analysis has been very individual and how well be think, could be a matter of life or death. Quite simply we are programmed to try and work out what is healthy and what is unhealthy. That way we can make an informed choice about what we do, if the penalty health wise is low, we might do it a little but if the penalty is high then you will probably find we don’t do it a lot, if at all.

As this is hard wired into human nature we are unsettled if we don’t know what causes something. Fibromyalgia as a concept is very difficult to work out. Sometimes if we walk 1km we feel fine, sometimes if we walk 10 metres we become ill. Naturally we want to understand this to be in the best of health so we can live happy and fulfilled lives, without undue concern about our health. Unfortunately Fibromyalgia is very complicated indeed. But we are programmed to want to understand it.

To understand something we need to gain knowledge about a given subject. When it comes to health “what causes” something is a huge part of this knowledge. In the history of humanity, our very survival has been based on solving “what causes X?”, what causes the plague, cancer, AIDS? We have also learnt that we can only prevent things happening after we have understood what makes them happen in the first place. Our medical understanding of Fibromyalgia/CFS/ME is very limited indeed, not just as individuals but as a species. At the moment we can not treat Fibromyalgia with much success and we can not cure Fibromyalgia at all! This is the first reason why “understanding what causes Fibromyalgia?” is so important.

Our Private information

Fortunately Fibromyalgia does not appear to be contagious, but other than that we don’t really know that much about it. Yet we can all agree that having Fibromyalgia is detrimental and not having Fibromyalgia is beneficial. Therefore it is important for us to know we can not give it to others. Throughout history medical conditions have either been contagious or non contagious. The way a condition is passed to another person has become very “socially” important to us because often it says something about our actions or our life choices. Disease can be passed through being “unhygienic” or “unclean”, it can be passed through our genies and it can be seen a “defect” or the ultimate social taboo is passing something through sexual contact. This sexual contact can also, on occasion reveal our sexual preferences, sexual boundaries and even who we may have had sexual contact with.

So here “what causes” a health condition can say so much about us socially, it can reveal our lack of personal hygiene, our genetic differences or how or who we have has sex with. These or often considered very private matters, so it is important for us to understand what causes a health condition so we understand if it reveals something about us we would rather keep private. We are also aware that these statements about us are not always accurate, sometimes our understanding of transition type has been wrong, however it can not simply be corrected as these things have developed into social stigma, social prejudice and social stereotypes. For example during the AIDS epidemic initially some people believed you could only catch it through homosexual practices, so if you had AIDS then you have obviously had homosexual sex? That was the belief for quite sometime and remains a social stigma today even though we know AIDS develops from HIV, which can be contracted through sexual contact with ANY sex, through blood products/transfer and possibly poor hygiene in medical procedures (needle sharing etc). So if we have a condition where its cause is unknown, what could it say about our private lives in future? No matter how accurate they may be. This is one reason why we want to know what Fibromyalgia says about us.

What it says about our lifestyle and our choices to others

We have also learnt that having a health condition can say so much about us beyond the things that we like to keep socially private. Our medical understanding has been a recent revolution and for the first time in history generations of people now know certain lifestyles or certain choices can cause health conditions or make them worse. For example we know being overweight increases our chance of diabetes, smoking increases our chance of cancers and heart disease. We also understand that people who are physically fitter, generally have better overall health and suffer less medical complaints that those who are unfit. So what does Fibromyalgia say about us? The fact is we don’t yet know, it is unknown, we have clues but no concrete answers. Could our choices prevent Fibromyalgia or not? Does it mean we are more likely to lead an unhealthy lifestyle, make poor choices, or be lazy people? We do not actually know. As times goes by we “slowly” have more information but we are years, if not generations away from any definitive answers.

Can other people get Fibromyalgia because I have it?

This isn’t quite the question “Can someone catch it from me?” But it encompasses it. As mentioned earlier we look at any condition and categorise it, for example. Is it viral? is it bacterial? is it fungal? Is it genetic? Is it because of my personality or lifestyle? Am I sure I can not pass it on to anyone?

At first glance we know most of the answers are “no” but can we actually be sure:

Looking at all the different theories out there makes you wonder. Often the onset of Fibromyalgia is linked to a severe illness like the Flu, so does it somehow ride in with a virus or bacterium? Often theories involve an undiscovered transmission from plants or animals like Lyme disease, so could I have caught it from a person? An animal? A plant? At a specific place? Often theories cite a genetic weakness so did I get it from my parents? Did I have a genetic weakness that activated because I did something or caught something? Often theories cite a psychological cycle so do I have a psychological problem?

All of these questions have implications, their answers could mean that we could either pass Fibromyalgia on or help stop Fibromyalgia developing in others if we knew the answer. If we (people with Fibromyalgia) found out for certain we could do something to reduce the risk of others getting Fibromyalgia I’m almost certain most people would make that their number one priority in life. Especially if “others” were your children, your partner, your family, your friends or your neighbours. While most indications point to us not being able to take evasive action we are still going to think about it. The implications are just so large for it not to be a concern to some of us. We know this condition well and for most of us it has a severe impact on our lives and everything we do, so its only natural to try and stop others experiencing the same.

I have often heard the phrase “I wouldn’t wish this on my enemy” used in discussions between Fibromyalgia patients and I think it is a very telling phrase when it comes to considering what we would do if we could stop people from getting the condition.

How to manage our condition

We have also learnt as a species that certain conditions can be controlled better than others. However we also realise that this knowledge is often gained after we learn what causes the condition in the first place. Due to the fact we don’t understand what causes Fibromyalgia we don’t have definitive answers about what makes it worse and what makes it better. We know that while the cause remains unknown the best we can hope for is collective trial and error. We rely on others with our condition finding ways to ease it and we rely on them telling everyone else too. Yet we know as Fibromyalgia patients, what works for others does not always work for us, but how can we understand why this is without first understanding what causes Fibromyalgia in the first place?

How It makes us vulnerable

As a species we have also learnt that were there are questions, there are opportunities. We know that generally one person in 7 billion is likely to know “the answer” (What causes Fibromyalgia?) first. Then from that they share this knowledge, this carries on, until we know the answer as well. We know at some point the answer will probably be found so we need to remain open but how do we know when the answer in genuine or not? How do we, with limited medical knowledge, test and verify any persons claim to know “the answer.” As we have this question some people could take advantage of this opportunity to deceive.

We understand that “the answer” could be the key that unlocks to door to a normal life, but so do others, perhaps they know how desperate we need “the answer” or what we would do to get “the answer.” This is when we realise we are vulnerable, we know that scams, fraud and deception are rife among human kind, we have all been a victim of deception or know a victim of deception so we see that victims become victims because they desire “something” and “someone” can take advantage of that.

Victims of scams often only need to desire something little to get caught out and we know this. Often people are conned out of a few pounds due to a slight desire to make a few pounds. However we also understand we could be conned out of our life savings if we desire something strongly enough. So we actually realise how vulnerable we are, as patients with Fibromyalgia we know we would probably give a limb, or a huge sum of money to know “What causes Fibromyalgia?” and we understand this makes us very vulnerable indeed. However this quickly becomes a “catch 22” situation because if we knew “What causes Fibromyalgia” we would suddenly become far less vulnerable and susceptible to the scams. Some of us may know Fibromyalgia patients who have been conned out of cash over the Internet for the “Big Fibromyalgia cure in a tablet” only for them to find it didn’t help in the slightest.

We understand that our desires make us vulnerable, that the strength of our desires can determine what we are prepared to lose and that our desire to understand what causes Fibromyalgia is huge, making us very vulnerable indeed.

What does Fibromyalgia say to us about our choices?

We have discussed about what Fibromyalgia could reveal to others about our choices but what could they reveal to us?

We know that stress can make Fibromyalgia worse, so did we make choices that were too much stress for us to handle?
Did we choose a job or career that was too stressful?
Did we have a relationship with someone that put us under too much stress?
Did these things make it worse or could they have caused it in the first place?

These are questions we often ask ourselves. It is a natural part of reflection and we have discussed how thinking and curiosity is programmed into us and how sometimes is can really benefit us. However all of the little questions all come down to one big question; What causes Fibromyalgia?

It is no surprise to find most of us review our choices in the past and ask what if? The simple fact is no one knows. It does not make the question any less important however we should appreciate that there are an infinite amount of “what if’s” we can ask during out lifetime. One day I would like to know the answer and I really hope I do. It would be interesting to know if I could have avoided some of the pain I have been through and it could really benefit my decision making in the future if I knew the answer.

Does asking the question “What causes Fibromyalgia?” actually cause Fibromyalgia or make it worse?

Before you say “What? No,” just humour me for a second. Most of the people I know with Fibromyalgia are the “curious”, “analytical” types. Heck I wouldn’t be writing articles in the early hours of the morning if I didn’t think about Fibromyalgia all the time and have such a drive to want to help others with it. Perhaps these elements of our characters or personalities exasperate our condition?

On an assessment for a pain management course I was asked about what I do to try and help my condition. My answer involved a little bit about my lifestyle but also a lot about what I do to research the condition, help others with the condition and push for answers about the condition. This took a very long time to explain but at the end of it I was told that I needed to learn to let go of these things and accept I have Fibromyalgia, that I always will have the condition and that it will remain a mystery to me otherwise all my efforts would continue to make my condition worse. This is the first time I had been confronted by the opinion that continually looking for the answers actually makes the condition worse and perhaps causes it in the first place. This took place quite some time ago and after a great deal of consideration I dismissed this theory as incorrect. However to balance this article a little I decided to mention it as this theory is held by a lot of the medical profession and does have some interesting elements to it. I certainly agree that at times our frustration with our search for answers can manifest into physical health problems or perhaps make some symptoms worse. As such I have eased off the gas pedal a little when it comes to research as I acknowledged senses of frustration which can again cause physical problems. I also wanted to mention it as you may come up against this view when you explain why the question “What causes Fibromyalgia” is so important to you to others.

Conclusion

I believe we are hard wired as humans to ask “What causes Fibromyalgia?” and the more we are effected by Fibromyalgia the more we will want to ask the question. I do not think its something to be ashamed of by any means and in fact is demonstrates we want to learn to better ourselves, to lead happier and healthier lives. Throughout history this mechanism has contributed to our success as a species on the planet and I personally believe trying to avoid the question would go against what it is to be human. For patients an answer could unlock the doors to so many possibilities and I think we all need to push a little for the question to be answered. I also hope I have managed to explain to people without Fibromyalgia why the question is so important to us and why it has a multitude of implications for us, our friends and families.

The voice of reason

I have tried to objectively explain why this question “could” be very important to those with Fibromyalgia and why most other questions actually boil down to this one question after analysis. I have also discussed some of the potential implications of the question remaining unanswered and thus some of the potential implications of the question being answered in the future. However a lot of these implications are very unlikely and although we can not rule these possibilities out completely I should point out the chances and probabilities to put them in perspective. If you remain considered and vigilant you are unlikely to be a victim of deception for example. Also although we don’t know what causes Fibromyalgia the chances of you passing it on to others are remote and if it is genetic you probably could not do anything to limit the chance of it being passed on anyway. In the future there is likely to be far more knowledge about the condition, its causes and how to treat it as history has demonstrated to us about illness in the past. If any of this article causes you significant concern you should discuss it with a medical professional who is far better placed and far more knowledgable about medicine than I am. Things need to be put in perspective and not taken out of context, these are just some of the things that could concern patients and there may be many more I have missed, but its unlikely for a patient to be concerned about them all for most of the time. However if you feel you are concerned about the majority of issues raised most of the time you may really benefit from a medical perspective and various talking therapies available to help you cope with your concerns.

I also encourage comments and would love to see people’s opinions under this article, have I missed anything? Did you find it useful or not? What are your more significant concerns? Etc etc.


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