Fibromyalgia

[zkt]

Fibromyalgia is a syndrome, a constellation of signs and symptoms, characterized mainly by chronic joint and mucsle pain. It often accompanies autoimmune diseases such as rheumationd arthritus(RA) but doesnt respond to glucorticoid treatment as do the autoimmune diseases .
The cause and mechanism is subject to controversy and several theories exist as to its etiology. The one that interests me is the one that states that the problem is an oversensitivity to pain impulses and not the intensity of pain itself. In other words, persons having Fibromyalgia just over-react to normal pain. It is much more common in women than men.
My wife was diagnosed with RA many years ago and has been mostly symptom free and recently diagnosed with Fibromyalgia by her rheumatologist. As John Lennon once said " I`m an artist and sensitive as shit !", applies directly to her. She is the ultimate over-reactor to, shall we say, things that offend her sensibilities. Not to mention a total baby to adverse physical stimulii. What I claiming is that the over-reaction to painful stimulii extends to adverse physical AND to psychological stimulii.
My question is: is there anechdodal evidence among this forum for this phenomenom ? After 25 years I`m pretty sure I`m reading this right in her.
Does this ring a bell with anyone?

[jinxie1]

Over active sympathetic system (adrenaline surges) and/or underactive parasympathetic system may be part of the explanation. It is quite possible that there is a glitch in the autonomic system that is not merely psychosomatic. This would cause an exaggerated response to all forms of stimuli. It's like being hyper vigilant, which leads to chronic exhaustion.

I have a pretty high tolerance for pain, and was diagnosed as having some variant of fibromyalgia by a rheumo, based on pain from trigger points and my highly-fragmented sleep architecture. Since this DX, I've seen a lot more docs, and submitted to many more tests, and have concluded that I do not have fibromyalgia; rather, I suffer from dysautonomia, which can manifest similarly in some respects.

I wish you and your wife the best.

[Gator8]

What I claiming is that the over-reaction to painful stimulii extends to adverse physical AND to psychological stimulii.

As one who suffers with Fibromyalgia and dyasutonomia, I can assure you that you are off track. Fibromyalgia is a central pain syndrome. Pain pathways become upregulated to process pain. How can you say pain that someone experiences is "out of proportion"?

Dysautonomia is a nervous system injury. The autonomic nervous system dumps adrenalin when other measures to regulate blood pressure fail. The result is excessive adrenalin, followed by adrenal fatigue. When one spends a great deal of time flooded with adrenalin, one will limit all activities that cause the discomfort. Activities as seemingly simple as sitting or standing will trigger adrenal surge, pain, distress, panic and anger. And you think she is an over-reactor?

She is the ultimate over-reactor to, shall we say, things that offend her sensibilities. Not to mention a total baby to adverse physical stimulii. What I claiming is that the over-reaction to painful stimulii extends to adverse physical AND to psychological stimulii.

Amazing remark. She deserves someone better.

[zkt]

Originally Posted by jinxie1

Over active sympathetic system (adrenaline surges) and/or underactive parasympathetic system may be part of the explanation. It is quite possible that there is a glitch in the autonomic system that is not merely psychosomatic. This would cause an exaggerated response to all forms of stimuli. It's like being hyper vigilant, which leads to chronic exhaustion.

I have a pretty high tolerance for pain, and was diagnosed as having some variant of fibromyalgia by a rheumo, based on pain from trigger points and . Since this DX, I've seen a lot more docs, and submitted to many more tests, and have concluded that I do not have fibromyalgia; rather, I suffer from dysautonomia, which can manifest similarly in some respects.

I wish you and your wife the best.

Yes this makes a lot of sense so I read this:
NDRF which goes into more detail.
The hyper vigilalence you mention fits really well. That is a much better way of looking at the problem than "over reacting" which many people have mis-intrepreted. IMHO it is often like she is just looking for something to go wrong and cant stand for things to be on an even keel. It is almost like she needs the adrenaline rush of getting upset and angry. I dont mean to imply that this is under conscious control.
She also tends toward sleep apnea and so the REM sleep isnt normal.
What were you refering to by " my highly-fragmented sleep architecture" ?
I disagree with her DR`s Dx based to the lack of trigger points. She certainly does have chronic neck and upper back pain and has had a cervical fusion C456 due to disc degeneration. I think he didnt know what else to call it so settled on FA.
She has another Sx that baffles me: all the Sx of hypoglycenia but not supported in the slightest by the usual daignostic lab tests. Insulin and glucose are well within the normal range both fasting and not. But if she doesnt eat when she is hungry she gets confused, spaced-out, weak and body temp feels haywire. The endo dismissed her without an explanation. AM cortisol normal too, as is thyroid. Is this familiar to you ?
Additionaly, in the summer she is too hot and the winter too cold.
BP runs normal to low normal all the time.

Appreciate your input and if you have any more to say would be very happy to hear it.

[zkt]

Originally Posted by Gator8

As one who suffers with Fibromyalgia and dyasutonomia, I can assure you that you are off track. Fibromyalgia is a central pain syndrome. Pain pathways become upregulated to process pain. How can you say pain that someone experiences is "out of proportion"?

Dysautonomia is a nervous system injury. The autonomic nervous system dumps adrenalin when other measures to regulate blood pressure fail. The result is excessive adrenalin, followed by adrenal fatigue. When one spends a great deal of time flooded with adrenalin, one will limit all activities that cause the discomfort. Activities as seemingly simple as sitting or standing will trigger adrenal surge, pain, distress, panic and anger. And you think she is an over-reactor?



Amazing remark. She deserves someone better.

Dude, you misunderstood me. Your judgement is completely out of line and unwarrented.

[marianco]

Originally Posted by zkt

Fibromyalgia is a syndrome, a constellation of signs and symptoms, characterized mainly by chronic joint and mucsle pain. It often accompanies autoimmune diseases such as rheumationd arthritus(RA) but doesnt respond to glucorticoid treatment as do the autoimmune diseases .
The cause and mechanism is subject to controversy and several theories exist as to its etiology. The one that interests me is the one that states that the problem is an oversensitivity to pain impulses and not the intensity of pain itself. In other words, persons having Fibromyalgia just over-react to normal pain. It is much more common in women than men.
My wife was diagnosed with RA many years ago and has been mostly symptom free and recently diagnosed with Fibromyalgia by her rheumatologist. As John Lennon once said " I`m an artist and sensitive as shit !", applies directly to her. She is the ultimate over-reactor to, shall we say, things that offend her sensibilities. Not to mention a total baby to adverse physical stimulii. What I claiming is that the over-reaction to painful stimulii extends to adverse physical AND to psychological stimulii.
My question is: is there anechdodal evidence among this forum for this phenomenom ? After 25 years I`m pretty sure I`m reading this right in her.
Does this ring a bell with anyone?

Fibromyalgia exists.

It is a whole-body multisystem problem that involves numerous signaling systems in the body including the nervous system, endocrine systems, eicoisinoid signaling systems, and immune system - often with suboptimal nutrition, which provides the cofactors or signals necessary for the metabolic processes involved in each system. I note "endocrine systems" because there are numerous endocrine signals which are not taught in traditional endocrinology - e.g. the incretins (which are hormones made by the intestins to control blood sugar).

If a physician specializes only in one signaling system - such as the nervous system or the traditional endocrine system, they will see only one part of the illness and a such cannot thus characterize the illness. Several theories occur because each specialty only sees their side. When you can see the whole body, then it is fairly predictable.

Pain generally is a situation where inflammatory signals outweigh the antiinflammatory signals, thus increasing inflammation and activity of the immune system, triggering the perception of pain.

Norepinephrine - the primary emergency/stress signal of the nervous system - has multiple functions which can have opposing functions. This can lead to mental or physical illness.

Norepinephrine causes a person to either feel fearful (anxious) and/or angry (irritable). If dopamine has to be reduced in production to produce norepinephrine, then a person can also be depressed. All three emotions can be at play singly or in groups.

Norepinephrine, in signaling distress, triggers the release of pro-inflammatory cytokines from the neuroglia. This then increases activity of the immune system. If overactive, this leads to a significant increase in inflammation in the body, slows healing, and increases pain signaling. The pro-inflammatory cytokines themselves can change neurotransmitter production in the nervous system (e.g. reduction in serotonin production) and can produce a central pain syndrome. There are numerous other cascades in the signaling systems from an increase in norepinephrine.

Excessive norepinephrine signaling (e.g. overactive sympathetic nervous system) is one of the numerous contributing factors to the development of fibromyalgia. It is important to address as many as you can to get a full treatment and as optimal response as can be obtained.

As you may see, a person's mood can simultaneously change with the development of pain. A person's "overreaction" may be part-and-parcel of the same illness - Fibromyalgia. Mood disorders in Fibromyalgia are very common. I would consider them part of the same illness since the causes of both are the same.

Why doesn't fibromyalgia respond to glutocorticoid treatment? Glutocorticoids as used by rheumatologists are used in supraphysiologic doses. This leads to adverse effects which can worsen fibromyalgia. Thus, the treatment is chasing its tail.

For example, a supraphysiologic dose of a glutocorticoid will shut down the adrenal cortex. This leads to deficiencies in progesterone, estradiol, testosterone, DHEA, pregnenolone, aldosterone, etc. This is particularly true in post-menopausal women, who depend on their adrenal glands for almost all of their estradiol, testosterone, and progesterone. Progesterone, testosterone, and DHEA have antiinflammatory signaling functions. Estradiol, in women, reduces norepinephrine signaling in the nervous system in its function as an MAOI inhibitor (i.e. antidepressant). Supraphysiologic doses of glutocorticoids when used long term may also impair nervous system function directly, e.g. by causing insulin resistance.

Glutocorticoids are component of the treatment of fibromyalgia when indicated. But generally, I would use a subphysiologic dose, to avoid shutting down the adrenal glands, rather supporting their function, instead.

When glutocorticoids are used, then the other adrenal cortex hormones may need to be also used to make up for the reduction in adrenal function that occurs. For example, DHEA and pregnenolone should be also considered, if not progesterone, estradiol and testosterone. This would minimize the adverse effects from the glutocorticoid itself.

Patients do respond to treatment when it is a component of a complex treatment which tries to address as many of the signaling problems as there are in fibromyalgia.

IMPORTANT NOTE: If a person has severe psychological problems - such as a personality disorder, childhood trauma or abuse, a victim of sexual or emotional abuse, etc. - then the psychological issues - such as intrusive memories of trauma, or dysfunctional problem solving, impaired mindfulness skills, and impaired emotional regulation skills, etc. - trigger excessive stress signaling, and thus an excess of norepinephrine signaling - contributing to the physical illness itself. Even if the signaling problems are addressed with medications, nutrition, and other biological treatments, the psychological issues work against the treatment.

This is why it is so important to address the psychological component of the mental illness through therapy - before and during treatment. Otherwise, the treatment will fail or only have limited effect, and the patient is treatment-resistant and chronically ill.

The therapist of such a patient, has to be able to focus on these psychological/behavioral issues, regardless of the presence of the physical components. Generally the good ones are able to thus work independently of the physician, so long as the patient's cognitive abilities are intact.

When a person has no significant psychological issues, the improvement in condition from treatment can be spectacular, in my experience. But if they have serious psychological issues, then it is important to temper one's expectations since the psychological issues have to also be addressed as part of their treatment.

The mind has hardware and software components. Both have to be addressed to be fully healthy. The most difficult patients are those with severe psychological issues - e.g. the personality disorders, etc. In these cases, it is important to separate these issues from the person since the person doesn't yet have the therapy and skills to address these issues, and thus shouldn't be blamed or labeled for their problems. Such a patient is much more difficult to manage, however. And local treatment may be necessary, rather than a long-distance treatment, to allow more frequent therapy visits and medical assessment.

[HeadDoc]

good to see you back. How's the book coming.

[marianco]

Originally Posted by HeadDoc

good to see you back. How's the book coming.

I can't be back for a time.

The question on Fibromyalgia was too tempting to answer.

In regard to the book, I'm in simplification mode. I was trying to write an encyclopedia - which became too onerous. I have a good working model and definition of the mind - which did not exist before.

It is interesting that throughout the history of mental health, people have defined mental illness but disregarded a definition of the mind - the physical correlate. Without a definition of the mind, then research studies are deeply flawed because you don't know what to measure. You cannot describe or monitor or measure a mental illness except through outward appearance. And the biggest mistake is defining the major mental illnesses as having NO physiologic basis - as DSM-IV does. If there is no physiologic basis, why use medications? Why do patients with severe mental illness die 25 years younger than those without? Etc. The lack of a definition of the mind has contribute to serious errors

Anyway, see you later!

[Gator8]

Originally Posted by zkt

Dude, you misunderstood me. Your judgement is completely out of line and unwarrented.

I appolgize. I viewed your remarks as uncaring and unsympathetic. I tried to come back and edit my remark half an hour later, but editing was blocked out for some reason.

Pain expressed by your wife is not out of proportion to what she experiences. She experiences much more distress than she is likely to express to you. Her reaction to stress, bad news, any news on TV and neverending pain is not out of proportion if her pain is similar to mine. Fibromyalgia causes never ceasing arousal that whittles away at one's patience. At the onset of this illness, I had to turn off the TV news because I couldn't take one more tidbit of information. In Fibromyalgia, minor tasks of daily living trigger the damaged autonomic nervous system to flood the body with adrenalin. You cannot experience anything more disabling and what she experiences, and her symptoms are chronic. The nearest you could imagine is to be stalled on railroad tracks with the train coming and unable to escape because the car is dead and the doors locked.

She is also not expressing pain out of thin air. She experiences pain due to changes in the brain. Some call it neural plasticity. The brain remodles to process pain signals, possibly in response to inflammation, stress or trauma. There are peer reviewed articles that remark this is a central pain syndrome, not unlike CRPS or RSD. All pain is experienced in the brain as a consequence of nerve signals or even the lack of nerve signals. Lack of nerve signals will up-regulate sensitivity of the nerves that remain functioning. I can have our cat walk across my legs while I'm sitting watching TV and it hurts like an elephant crossed. No, I don't have an excess emotion response "cry baby" reactionto our cat visting. I can tell you with assurance, that is is amazing how much pain a ten pound cat causes as he runs across sensitive tissue with fibromyalgia.

The muscle knots in my back hurt all the time, as though I've lifted furniture all day long. I have palpable knots in my back that migrate around. I suppose I could "will" or "over react " to pain symptoms, but these knotted muscles produce clusters of painful hard lumps are not imagined or over reaction to pain stimulus. Surgeons have removed such knots in patients in the past, thinking they were the source of pain. (no, not in my instance, but this had been attempted in others because the lumps are real) But the knots are there from autnomic nervous system efferent signals, not from any organic disease in the muscles. These knots are common to MS, which is also recognized to cause aberrant brain signals.

You have to understand that in Fibromyalgia, the autonomic nervous system is stuck in fight or flight mode. The sensations from daily living of even sitting in the arm chair are experienced quite similarly to narrowly missing a head on collision with a train. Except after the near-miss you will recover the adrenalin rush that sent you into terror, anger, fright and fatigue will end half an hour later once the adrenlin is spent. In fibromyalgia, the fight or flight mode exists most of the time. Life demands exacerbate the symptoms and elicit protective response that some view as "won't do Sh1p". When the adrenalin is consumed, it is replaced by collapse. Sitting, or worse yet standing in a line brings on an onslaught of anxiety, impatience, anger and later fatigue. Much of it is embarassing and out of character.

Since fine fiber nerves are effected, or the processing of fine fiber nerve signals is effected, the pain from a draft over the skin can be similar the experience of napalm burning the flesh or frostbite. Muscles, skin and bone hurt with a difuse pain that is hard to pinpoint.

Your wife's symptoms are not imagined. They are not out of proportion to her experience, even if the response is rage or emotional outburst. These reactions are the consequence of overwhelming and taxing arrousal. They can be measured with thermography, skin sweat test in a sauna, tilt table test and a multitude of other measures.

[zkt]

Thank you for sharing your knowledge, insight and direction for further study. I am currently in a discussion with FA suffers on another forum. If I may have permission to copy and paste your remarks in their entirety, with proper credit to you, I am they will find them interesting and beneficial.

[zkt]

Originally Posted by Gator8

I appolgize. I viewed your remarks as uncaring and unsympathetic. I tried to come back and edit my remark half an hour later, but editing was blocked out for some reason.

Pain expressed by your wife is not out of proportion to what she experiences. She experiences much more distress than she is likely to express to you. Her reaction to stress, bad news, any news on TV and neverending pain is not out of proportion if her pain is similar to mine. Fibromyalgia causes never ceasing arousal that whittles away at one's patience. At the onset of this illness, I had to turn off the TV news because I couldn't take one more tidbit of information. In Fibromyalgia, minor tasks of daily living trigger the damaged autonomic nervous system to flood the body with adrenalin. You cannot experience anything more disabling and what she experiences, and her symptoms are chronic. The nearest you could imagine is to be stalled on railroad tracks with the train coming and unable to escape because the car is dead and the doors locked.

She is also not expressing pain out of thin air. She experiences pain due to changes in the brain. Some call it neural plasticity. The brain remodles to process pain signals, possibly in response to inflammation, stress or trauma. There are peer reviewed articles that remark this is a central pain syndrome, not unlike CRPS or RSD. All pain is experienced in the brain as a consequence of nerve signals or even the lack of nerve signals. Lack of nerve signals will up-regulate sensitivity of the nerves that remain functioning. I can have our cat walk across my legs while I'm sitting watching TV and it hurts like an elephant crossed. No, I don't have an excess emotion response "cry baby" reactionto our cat visting. I can tell you with assurance, that is is amazing how much pain a ten pound cat causes as he runs across sensitive tissue with fibromyalgia.

The muscle knots in my back hurt all the time, as though I've lifted furniture all day long. I have palpable knots in my back that migrate around. I suppose I could "will" or "over react " to pain symptoms, but these knotted muscles produce clusters of painful hard lumps are not imagined or over reaction to pain stimulus. Surgeons have removed such knots in patients in the past, thinking they were the source of pain. (no, not in my instance, but this had been attempted in others because the lumps are real) But the knots are there from autnomic nervous system efferent signals, not from any organic disease in the muscles. These knots are common to MS, which is also recognized to cause aberrant brain signals.

You have to understand that in Fibromyalgia, the autonomic nervous system is stuck in fight or flight mode. The sensations from daily living of even sitting in the arm chair are experienced quite similarly to narrowly missing a head on collision with a train. Except after the near-miss you will recover the adrenalin rush that sent you into terror, anger, fright and fatigue will end half an hour later once the adrenlin is spent. In fibromyalgia, the fight or flight mode exists most of the time. Life demands exacerbate the symptoms and elicit protective response that some view as "won't do Sh1p". When the adrenalin is consumed, it is replaced by collapse. Sitting, or worse yet standing in a line brings on an onslaught of anxiety, impatience, anger and later fatigue. Much of it is embarassing and out of character.

Since fine fiber nerves are effected, or the processing of fine fiber nerve signals is effected, the pain from a draft over the skin can be similar the experience of napalm burning the flesh or frostbite. Muscles, skin and bone hurt with a difuse pain that is hard to pinpoint.

Your wife's symptoms are not imagined. They are not out of proportion to her experience, even if the response is rage or emotional outburst. These reactions are the consequence of overwhelming and taxing arrousal. They can be measured with thermography, skin sweat test in a sauna, tilt table test and a multitude of other measures.

I`m glad we got that straightened out. I can certainly see how my initial remarks could have been interpreted as uncaring and unsympathetic. I posted the same initial comments on another forum and most of the respondents saw them as you did and many nominated me for the Prick of the Year Award. The error was clearly mine. .

But now that Dr. Marianco has this discssion back on track, and the right track at that, I hope you will share your understanding and experiences with me in an attempt to better understand the issues.

[Gator8]

ZKT, I'm glad we made our peace here. I was overly sensitive last night in my remarks. Tonight I discovered that a post cannot be editied after fifteen minutes. That needs to be fixed so reactive remarks like my own can be deleted for at least a few hours. You have been here a long time and been helpful to me. My personal remark was out of line. Your comment was consistent with what most well people viewing this illness from the outside perceive, so I should have been more diplomatic....

I should be more tolerant of those who cannot appreciate the disability and as you say "constellation of symptoms" that dysautonomia and Fibromyalgia cause. I've lost many friends who think I'm a malinagerer, because when I push past the symptoms briefly through necessity, they just cannot understand why yesterday I cut some fallen branches from a tree and today I am flat on my kester.

I have seen some improvement since correcting hormonal inbalance, even with the painful neuropathy. Since 4/5ths Fibromaylgia patients are women that are peri-menopausal, I think there is an important connection between hormones and Fibromyalgia.

I will search for the journal references that show Fibromyalgia is a central pain syndrome and drop the links by here later on.

[zkt]

Originally Posted by Gator8

ZKT, I'm glad we made our peace here. I was overly sensitive last night in my remarks. Tonight I discovered that a post cannot be editied after fifteen minutes. That needs to be fixed so reactive remarks like my own can be deleted for at least a few hours. You have been here a long time and been helpful to me. My personal remark was out of line. Your comment was consistent with what most well people viewing this illness from the outside perceive, so I should have been more diplomatic....

I should be more tolerant of those who cannot appreciate the disability and as you say "constellation of symptoms" that dysautonomia and Fibromyalgia cause. I've lost many friends who think I'm a malinagerer, because when I push past the symptoms briefly through necessity, they just cannot understand why yesterday I cut some fallen branches from a tree and today I am flat on my kester.

I have seen some improvement since correcting hormonal inbalance, even with the painful neuropathy. Since 4/5ths Fibromaylgia patients are women that are peri-menopausal, I think there is an important connection between hormones and Fibromyalgia.

I will search for the journal references that show Fibromyalgia is a central pain syndrome and drop the links by here later on.

Dr. Marianco has illuminated the subject perfectly.
It`s biochemical nature is now obvious. Since the biochemistry determines the behavior, that too is explained. What I have perceived as looking for something to go wrong is better characterized as waiting for it. After all why would the body put you on alert if nothing was about to happen ? Thats gotta be confusing.
The dopamine to norepi conversion explains the brain fog is caused by low dopamine as is the depression existing prior to starting SSRIs. One is tempted to blame the whole thing on overproduuction of epi . But apparently this is not he believes to be true. Not as simple as that. The body`s signaling system is involved as well. Now were are into the receptors and the chemicals that carry the signals. This is sounding a lot like autoimmune diseases.
There is so much to be considered here and its hard to tell whats the most important focus. For instance, what about the blood pressure ? Would you expect it to run at least a little high ? If not then the baroimetric setpoint must have been reset in my wife. What does patient statistics say about this ?

[Gator8]

Originally Posted by zkt

After all why would the body put you on alert if nothing was about to happen ? Thats gotta be confusing.

The body will do this when the nerve pathways are damaged or the CNS is rewired to process these signals as priority. Stop breathing a few moments. You will find the autonomic nervous system spring to actdion. And yet, the response is to make you feel short of breath too.

It is not just confusing. It is outright disabling and is not something a victim/sufferer can ignore through choice. There are ways to manage this, such as biofeedback, which can have impressive results by self-regulating the autonomic nervous system. When I was told this advice by a neurologist, I thought he was wrong. I thought, how can I spend the whole day engaged in biofeedback? But he was offering the more important of treatments available. One can learn to subdue the autonomic nervous system. The reduction in pain that follows this autonomic control lasts way longer than the effort or time spent.

Imagine you have a near miss at the RR tracks and how you feel for the next half hour. Now imagine feeling the same way for the rest of the day, but there is no reason except that you are sitting or standing. Picture laying down relieving the distress. What would you do? It is not just confusing. It is disabling. It causes anger, rage, fatigue, confusion, resentment and much more. Choices are fight, flilght or retreat.

I'll give a few of the PubMed references for information and research. You know how to search these since you've been here a while, but if you have trouble locating, please ask.


PMID: 18537652
PMID: 18323769
PMID: 17762849
PMID: 17602995
PMID: 17115100
PMID: 17019257
PMID: 16310717
PMID: 16078360
PMID: 16078359

I still have to find the root article to credit the first researcher who described Fibromyalgia as a Central Pain Syndrome. He is the doctor who got it right. I will post that PMID when I find it.

[JimRat]

That's a nice fruitful discussion. Thanks guys. I would advise fibro sufferers to completely rule out Lyme disease as well. These conditions can be difficult to diagnose but can be equally detrimental to health. Controversy rages about whether or not Lyme can be chronic but there is good evidence to support that it may be in some cases. I suggest this because I was diagnosed thru a positive Western blot in November and am still trying to right the ship so-to-speak. Lyme, like syphilus, can masquerade as many other conditions.

[gettingold]

Damn Dr. Mariano is smart.

[Gator8]

Originally Posted by gettingold

Damn Dr. Mariano is smart.

That is why he is the doctor and we are the patients.