Is Fibromyalgia Real?


#1

I am not sure if I believe it is or if it is indeed real, it is being described accurately by patients or health practitioners.

This thread will surely evolve, I am sure, and I will take more time to flesh out my thoughts on the issue.

I am a licensed Social Worker so I do know a bit about the bio-psychosocial realms would surely impact the dynamics of this controversial condition.


#2

Interesting question. I’ve often wondered that myself, but the more I read, the more it seems likely that it is real, at least in many ways - and surely in the minds of those who have been told they have it.
One thing I’ve noticed that I wonder if it may be coincidental: all of the people I know who have been diagnosed with it are overweight - and most of them quite a bit so. Maybe that’s because when you’re in pain you don’t get as much exercise to burn off the calories, or maybe it’s just that the people I know with it all happen to be overweight.
I do know that I’ve found when I’m in pain for an extended period of time as I’ve been lately from something totally different, I’ve been gaining weight myself - about a pound every two weeks. I think it may be less exercise for fear of making my injury worse combined with the fact that I’m worried the pain may never go away or that I’ll need surgery. And when I worry, I eat to help me forget. Either way, this may or may not be the same difficulty for many people diagnosed with Fibromyalgia. Has anyone else noticed many folks with the condition to be overweight?


#3

My sister has been diagnosed with it, and she’s very slender, eats more healthy than just about anyone I know, and is very physically active.

I don’t know if the condition is misdiagnosed, but knowing my sister’s personality, she wouldn’t complain about anything unless it were very significant. She’s a very busy mom… to paraphrase Jesse Ventura, “she ain’t got time to bleed.”


#4

I have a cousin who has been a nurse for over 30 years and who has it. She excercises regularly and eats well balanced meals. She has never had a problem with weight. The pain is severe enough to send her back to bed regularly. She uses heat pads and stretching regimens which seem helpful. The condition is quite real to her; she has dealt with it for at least a decade.


#5

I think I would rather err on the side of compassion on this one. None of the people I know with fibromyalgia were overweight, however, not wanting to offend, this is just an observation, all the people I know with fibromyalgia, were abused in some way or another.:(.
I don’t understand this malady but try to be compassionate about it.


#6

Fibromyliagia is thought to be the result of hypersensitive firing of neurons. This condition has been shown to manifest in people who either have experienced a severe trauma,or even being in a car accident or something similar. The fight or flight response takes over,resulting in a heightened response to pain.The problem with FM is most people don’t look sick,so they’re looked at with a level of suspicion re their supposed pain.It is a real condition,itvused to bevcalled fibroitis.


#7

I know several people with this condition.

All were VERY fit at the time of DX. Some are no longer fit as their constant pain has stopped them from inducing any sort of pain with exercise as they don't respond to workouts with just a little ache. It's MAJOR!

What other things do you suppose aren't real? You know when Granny just starts ACTING like she's nuts. And can't remember her own name.

Well, I know my mother's era believes that Cramps and PMS were all in their head. My fave is when it comes from women who have never experienced cramps. What a bunch of whimps when they had children, you'd think there we're being killed. Just like cramps, according to my POOR mother! Can you imagine natural childbirth being EQUAL to your monthly cycle? Wow!

In fact, in the days of witch trials, many a hot flashing woman was suddenly deamed a witch and put to death. You know for normal, naturally occuring, hormone induced evil!

I think when science can explain/prove the existance of God, but can't explain a problem effecting many, then maybe I'll think it's all in someone's head.


#8

My son has it-a very debilitating disorder. He was in fifth grade when he started having good days and bad days, went through a battery of test just to learn at age 17 that he has it. It messed him up with his education-he went from an all-honor honors student to being pulled out of high school and put in on-line school just to fail everything due to lack of structure and support. No one would put him on home bound until the rheumatologist diagnosed him, and by then too much time was wasted and lost. It is real-his whole body sometimes hurts to the point that he can’t function. He used to be active in sports and karate and recently started back in karate with the hopes of working through his issues and trying to be healthy. His sleep is also messed up and he suffers from stomach problems along with migraines and exercise-induced asthma. He has been through a wringer and wants nothing more than having his old life back. He is currently 18 and trying to work on getting his GED. I have also learned through lab work that sometime as a toddler, he had mono (kissing disease). No one knew and not sure whether or not there may be a connection-heard that that is an old myth. I sure wish that I can trade places with him-hate to see him lose so much and suffer so much. I also knew a sergeant in the air force who was getting discharged and VA disability for fibromyalgia, among his several disability issues. So-it is real, not imagine or in the head. I hope someday that they will know enough about this disease to cure it. It sure is a mystery, for sure. :frowning:


#9

Fibfromyalgia also seems to be genetic. My mother in law (who is very thin) has it and she was active. She worked until she was 85, she is now 92 and still active. My husband and one of his sisters has it also. Even a lady I work with has it. There are several things I see in common.

Pain can be anywhere in the body and they can hurt in a different spot each day.

There are certain tender points in the body.

Fatigue seem to go along with it, mainly because the person has a problem sleeping.

Keeping active will help minimize the pain. Those who sit and do nothing seem to feel pain worse.

Also anxiety and depression seem to follow.

It seems as if doctors treat the symptoms and never really get down to solving the cause.


#10

There are a few really good websites devoted to Fibromylagia.It does seem that there may be connection to Epstein-Barr( mono) and FM.Also,chronic fatigue syndrome.A lot of FM sufferers have this condition as well.:frowning:


#11

Yes, it is very real. As far as I know, though, it is far from clear that everyone suffering from this distressing disorder is always suffering due to the same primary or precipitating cause. It can also co-exist with other conditions that also cause some of the symptoms, so it can be very difficult to sort out. Research is on-going, though: niams.nih.gov/Health_Info/Fibromyalgia/fibromyalgia_ff.asp

It is so very difficult to quantify and research pain. Fibromyalgia is not like a tumor, and the nervous system is very complex. Even with cancer, which can be isolated to one area of the body, we know that tumors that look very similar on gross imaging can look quite different under a microscope.


#12

As a therapist I have dealt with a few clients who state that they suffer from fibromyalgia and even some who receive disability or supplemental security payments with which they qualify, partiallly due to this diagnosis.

In working with my folks I have noticed a hyper-emotionality in discussing and describing symptoms which seem to blend with psychological factors like depression and anxiety. I certainly never judge clients but only echo back and help them to understand their own situation. Sometimes Fibromyalgia is a key part of this and sometimes it isn't.

I am not seeing the defensiveness or emotionality in posts here, so that is really refreshing and informative for me.

Like others have written, I believe that the neurological and psychological interplay evident in what is currently called Fibromyalgia is pretty complicated and about as clear as mud.

Likely, "Fibromyalgia" is a cluster of more or less, or even un-related phenomena which, with research, will be better understood in time. Some manifestations may be more biological, some psychological, and some facticious.

At the same time the somewhat nebulous nature of it and lack of biologically perceptable symptoms do lend to "faking it" or other somatic mental illnesses.

I really appreciate folk's feedback.

God Bless.


#13

I will have pain that I can’t explain. Some days are worse than others. I have noticed that the more upset I am the more pain I have. Yesterday was a very bad day for me. Very stressful and I felt very depressed. Now today I am in a lot of pain. There is a connection, for me, between the pain I have and my emotions. Could just be a symptom of depression/anxiety.


#14

Doesn’t this also mean that someone who actually has an unexplained chronic overexcitement of pain receptors is likely to be worn down not only by the pain (as a burn patient or other “obviously” pain-ridden patient would) but also by the uncertainty of not knowing what they have, when and how it will manifest itself, and by the feeling that they are not believed by everyone? The “fakers”, meanwhile, still have issues that clearly need to be addressed if they’re going to be happy and have fully functional relationships. I would imagine that some patients are also tormented by the thought that they may ebe bringing their condition onto themselves or making it worse by unknowing psychological actions on their own part, which in turn is hardly the prescription for someone with chronic pain.

Neurological and psychological interplay must not even begin to describe it. How difficult and frustrating it would be to try to treat that, let alone live through it!


#15

Be very careful when making judgments about others’ pain. Living with a chronic pain condition is debilitating, especially when you do not know from one day to the next how you are going to feel or how you’ll be able to function. Pain is a subjective thing, so whether you as a social worker think someone is “faking it” is not really relevant.

There have been a few studies in which fibromyalgia patients were given MRIs- their brains were shown to be different than those patients who did not have the disease. Hopefully, as you said, it will be better understood over time, but until then the medical community has given it a name and found it worthy of study and treatment, so it’s best not to speculate about whether it’s “real” or think that people are just making it up. A lot of people are in a lot of real pain and to make such comments undermines their person and experience. There are people who fake pain, sure. But those who are not far outnumber those who do.


#16

:thumbsup:


#17

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#18

[quote="Pink_Lemonade, post:15, topic:279434"]
Be very careful when making judgments about others' pain. Living with a chronic pain condition is debilitating, especially when you do not know from one day to the next how you are going to feel or how you'll be able to function. Pain is a subjective thing, so whether you as a social worker think someone is "faking it" is not really relevant.

There have been a few studies in which fibromyalgia patients were given MRIs- their brains were shown to be different than those patients who did not have the disease. Hopefully, as you said, it will be better understood over time, but until then the medical community has given it a name and found it worthy of study and treatment, so it's best not to speculate about whether it's "real" or think that people are just making it up. A lot of people are in a lot of real pain and to make such comments undermines their person and experience. There are people who fake pain, sure. But those who are not far outnumber those who do.

[/quote]

I think he only means that there are few ailments that no one has tried to fake, that this is where people in his specialty (psychology) are called in by other clinicians. Because of the absence of a laboratory test confirming or ruling out fibromyalgia, the possibility of deception with regards to this particular disorder poses a real difficulty for medical clinicians. How does one know? It is not as if you can ethically give treatments with real side-effects to everyone who asks for them. You have to be diligent in confirming that patients are giving honest histories and that the most obvious diagnosis is actually correct.

This is compounded by the issue of co-morbidity and the prevalence of people who are chronic seekers of prescription pain medications. For instance, a person with Munchausen syndrome really has a real problem, just not the problem(s) the patient claims to have. On top of that, of course a patient with Munchausen syndrome might actually get fibromyalgia, just as a patient with Munchausen syndrome might really get cancer. Mental illness is not a prophylactic against physicial illness. Likewise, a person with real pain can still become addicted to pain killers and become prone to the willingness to twist the facts that addiction elicits from people whose honesty was unassailable before they became addicted. And again: Being an addict hardly means you won't have a real physical ailment that causes real physical pain. The real problem that lead to the addiction in the first place is not magically cured when one becomes addicted to the treatment!

It is really a thorny problem, because a person who would fake something like this still is, from a therapist's point of view, in need of some help. Concluding that the person is merely a liar trying to get pain medications or trying to profit from the sympathy of others would be the diagnosis of exclusion. Faking a disease like this isn't something that leads to an optimal quality of life, after all. Sometimes, the faking itself is a symptom of a mental condition in need of treatment.


#19

A quick comment on the issue of pain. A few years ago, I learned from my Dr. that the ability to tolerate pain varies from person to person. It makes sense; we all have different gifts to share.


#20

This is an interesting topic. Personally, I have no idea if it is “real” or not, I have a friend with it who has so many other very real health problems that in her case it seems like a catch alll diagnosis to explain the resulting pain and fear.
I will comment on something I do know about- having a serious chronic pain condition that is not immediately apparent. Now I am losing the ability to walk, and most people could probably figure out that something is wrong with my legs, I have a severe hereditary neuromuscular neuropathy, but I take pains to look as well as I can. It is a terrible feeling to think that others might not believe that you have a problem, or think that you are seeking attention or drugs. I have a “hard” diagnosis, nerve conduction studies and skin biopsies that prove my disease. I have been known to carry the papers with me just to make myself feel better. If I had a “soft” unprovable diagnosis like fibromyalgia it would drive me crazy. I almost killed my neurologist when she started to go there. I think we need to err on the side of compassion here, but it worries me that the pharmaceutical companies are already sensing a gold mine, Lyrica, for example, is often prescribed for neuropathy, but the ads are all about fibromyalgia.

My mother was a real hypochondriac who terrorized her family and imagined herself as having cancer and leukemia for most of her 87 miserable years on this earth. I have serious mental issues dealing with health problems because of that. It may be that many of the skeptics, doctors as well, have similar backgrounds and are responding to that rather than to individuals who have been given this diagnosis because nothing else fits. People who self-diagnose with it are another story, perhaps?


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