Finally found a name for that weird color thing that happened to my nailes... Terry's nails

I've been trying to figure out what the hell caused this discoloration. Thinking surely it has to be some sort of nutritional deficiency. Or lack of circulation.

THAT is what my nails look like.  All of them. Toenails included. But my big toes actually looks more bruised at the top. Weirdest thing. Not sure about the toes because not like I look at them, but the nails just happened over night. I mean they were pale all the time. And the luna part (pale arch at the nail bed) to the nail has been gone for years and years, which oddly enough if you ask people with FM who have had it a while that statistically you find is fairly common if puzzling. But the flush redness at the top was new and odd. The only reason I really noticed it I expect was because my fingers were tingling one morning and I was not sure if the peripheral neuropathy in my left had was getting worse, plus I had this lingering cold I was wondering if the asthma I was still trying to adjust my meds to might have something to do with the hand sensations. Figured the color change had something to do with that maybe. Until it stuck around. I tried to look it up but there are a lot of odd nail changes and wasn't one hundred percent sure what I was looking for... red tips? Until I found a site that described it perfectly just recently and then Google imaged it and presto. Here it is.

Except none of the things this is associated with are really all that good. Or make any sense. Or are simple as I thought it surely must be. I highly doubt I have liver failure. Yeah some medications I am on can mess with your liver but one would suspect the other symptoms of it would be a slight clue. Nevertheless one doesn't like to see that on the list given the liver does work overdrive with some of those meds. Then there is hyperthyrodism... nope, I swing the opposite way. Malnutrition... not an issue. Diabetes... I sure the hell hope not... I mean come on! Like being excessively thirsty is a symptom one could ever determine is a symptom to diagnose me with diabetes... I'm always excessively thirsty. And then congestive heart failure which I think I'm too young for but given my other health conditions and the asthma I have the most symptoms of currently, but literally I have had all the tests for that before because when I wasn't diagnosed (directly prior to pretty much) for hypothyrodism I had some crazy arrhythmias (I mean seriously nuts) and horrific chest pains and did the whole heart work up... which would have been about eight or nine or so years ago. I doubt the ticker would have crapped out in that time span. Plus don't have high blood pressure, have low blood pressure. And the only chest pains I have had recently have been angina from triptans. And shortness of breath from triptans and asthma.

Sort of a weird or what symptom right? Maybe a situation where my nails are turning so pale you can see the flush of blood at the top where you put the most pressure? Beats the hell out of me. I think I will ask my doctor about it. I did mention it to the doctor assistant chick the last time when my doc was on holidays but she had no idea... but I was pretty damn sick at the time and because I was pretty damn sick with a sinus cold that went into my lungs while my asthma was not well managed we both speculated that had something to do with it. I don't know... I thought lack of circulation could cause that... I mean the hand with nerve damage is perpetually cold, not like I could tell if it had lack of circulation. Or maybe just a medication side effect. One never knows with odd ball symptoms. Bizzaro symptoms.

New Guidelines for Fibromyalgia treatment and diagnosis released 2013

New Guidelines for Fibromyalgia treatment and diagnosis released 2013


I go more into the change from specialist care to phsycian care. Some of the difference between our guidelines and the US as to the features of FM and discuss the treatment a little.

Anyway, personally...
I love that they are setting specific guidelines for physicians to treat FM. About freaking time. My treatment has been nill to indifferent when it comes to doctors. I saw a specialist one time... when I was diagnosed. I was put on Lyrica... by my neurologist as a off label migraine preventative that also might help with FM so in fact my neuro did more to treat my FM than anyone else since my diagnosis. Doctors sometimes help with symptoms that get bad if they can, most often not. One doctor put me on a sleeping pill... because of the migraines going nuts in the morning because my sleep was so poor due to the FM, not because of the sleep dysfunction from the FM which is rarely in-itself treated. Which I know because I had been told so many times... chronic insomnia cannot be treated. I do believe way back in the day one doctor tried one medication known at the time to be used off label for FM but it didn't work and the side effects were... brainlessly not fun. So yeah some actually help on that side would be nice. I just don't like the idea of doctors diagnosing people with FM because I have seen how that can go array. With the old criteria in the States doctors were not even following the criteria so how can we expect them to take the time to properly diagnose someone with FM? They don't take the time to treat them right now. I think it is easier for them to order the tests to rule out other conditions and then send the patient to a specialist to diagnose. I figure it is just because rheumatologists don't want to see these patients as it is not in this category any more but neither do neurologists. So we get left to the wayside. Just my opinion. And when they get the diagnosis, well, then it is luck of the draw whether that patient has a good doctor, a mediocre one or an indifferent one as to whether they will get any treatment for it.

However and this is a big however... the guidelines are pretty good and they are trying to put an emphasis on physician care. On their role with the patient and what can be done with FM. And this I think can reduce stigma and promote better care for FM patients. I found a great doctor, who happens to be relocating so maybe I'll never see this, or maybe I will. Maybe new patients will. I do know the lack of treatment I received due to lack of knowledge is not the way to go and future people diagnosed deserve better care than that. And the same goes to those that received Over treatment which is also common, too many medications, which leads to overlapping side effects and worse quality of life. More knowledge on how to treat patients will benefit everyone who is diagnosed.



Here is a little I could not fit into the article... some details from the guidelines:

Canadian Guidelines  worth the read through really. Interesting.

Features of FM:

Pain: Pain is the primary complaint in persons with FM and should have been present for at least 3 months. Pain onset is usually insidious, sometimes beginning in a localized area, may initially be intermittent, and then progressively becomes more persistent. Although pain is felt in muscle or joint areas, there is no physical abnormality of these tissues. A neuropathic mechanism to the pain may be suggested by report of a burning quality to the pain [14, 15]. Pain may vary in location and intensity from day to day, and can be modulated by factors such as weather or stress [16]. Cold and humid weather tends to be associated with increased symptoms [16, 17].

Fatigue: Fatigue, reported to be present in over 90% of FM patients, is the most common associated complaint [3]. Fatigue may even be more disabling than pain for some, and contributes to subjective report of functional impairment.

Nonrestorative sleep: Nonrestorative sleep is associated with FM [20]. Abnormal components of sleep that have been measured include sleep latency, sleep disturbance, and fragmented sleep leading to impaired daytime function [21, 22]. Poor sleep negatively impacts fatigue, affect, and pain, with improvement in these parameters when sleep specifically is addressed [23-26]. Other sleep disorders such as restless leg syndrome or sleep apnoea may also occur in patients with FM

Cogntive dysfunction: Cognitive dysfunction which includes poor working memory, spatial memory alterations, free recall, and verbal fluency associates with pain in FM as well as other pain patients and is different from healthy controls

Mood disorders: Mood disorder, including depression and/or anxiety, is present in up to three quarters of persons with FM, but mood disorders and FM are likely distinct [31].

Pain related somatic symptoms: Somatic symptoms, including irritable bowel syndrome, migraine headaches, severe menstrual pain, lower urinary tract symptoms, myofascial facial pain, and temporomandibular pain have all been associated with FM [36-39].

Cause:

Although the cause of FM is unknown, understanding that neurophysiological changes present in FM will reassure healthcare professionals that this condition is valid. An elementary appreciation but not in-depth knowledge of neurophysiological mechanisms will also help towards treatment choices. Neurophysiologic testing remains in the research domain and is not currently available for routine patient care, nor should be required to confirm a diagnosis of FM.

Abnormalities in pain processing have been identified at various levels in the peripheral, central, and sympathetic nervous systems, as well as the hypothalamo-pituitary-adrenal (HPA) axis stress-response system. Documented abnormalities include evidence of peripheral sensitization and wind-up phenomenon, central sensitization with changes in functional MRI and SPECT scans of the brain, increased levels of substance P in the cerebrospinal fluid, and impairment of descending noxious inhibitory control (DNIC)
[111-118].
Familial studies point to some genetic predisposition with up to 26% of relatives of patients with FM reporting chronic widespread pain (CWP), and FM diagnosed in 28% of offspring of FM women [119, 120]. Genetic factors may predispose some individuals to a dysfunctional stress response via the HPA axis [121]. While no individual gene has been associated with FM, there is increasing evidence of a polygenic effect, with polymorphism of genes affecting serotoninergic, catecholaminergic and dopaminergic systems playing a role [122, 123].

Psychosocial distress has been shown to predict onset of chronic widespread pain in population studies conducted in England [124, 125]. Early life adversity is linked to chronic widespread pain in adult life [126]. Abuse, which may have been sexual, physical or psychological, particularly in childhood has been reported with greater frequency in FM patients than controls [127-129]. These numerous interacting factors may be the

setting in which a stressful event, which could be physical such as a viral illness, traumatic, or psychological, can lead to a vulnerable health status and may be a trigger for FM as reported for nearly a quarter to a third of persons with FM [130].

Recommendations:
11. Healthcare professionals should be knowledgeable that objective neurophysiologic abnormalities have been identified in patients with fibromyalgia in the research setting, but are not available in clinical practice for either the diagnosis or care of persons with fibromyalgia [Level 5 [111, 117], Grade D].

12. Patients and healthcare professionals should acknowledge that genetic factors as well as previous adverse events may have contributed to the development of fibromyalgia, but focusing excessively on a triggering event could compromise patient care and should therefore be discouraged [Level 5 [123, 126, 130], Grade D].

Comparative pain scale chart... pain scale charts generally irk me but this one is quite descriptive

Well, according to this pain scale I exist at a pain level of 7 and 8 all the time when it comes to migraines. But I suppose on average that is right even though I might rate them differently because I use a different pain scale... that chronic pain pain scale that is totally skewed by having chronic pain. And I tend to rate an average migraine as a 6 and when it begins to get nasty a 7 and when I'm really disabled by it a 8 and when I'm completely crippled by it and immobilized and cannot even think past the pain, have had it straight for days and days a 9. And the occasional 4 and 5 being half treated migraines or migraines I didn't need to treat and was able to 'function' or think through the pain. A migraine diary would be really repetitive if it was all 7,7,7,7,8,8,7,7,7,7,8,7. Even though on average, yeah, I exist on 7 and play around on 8 way too often.

I suppose with FM pain it fluctuated between a 3 ad a 7 which is what I would actually use in what I calculate. I suppose my baseline pain is a 5 although I don't find it 'very distressing' it just is what it is... and your 'normal lifestyle is curtailed' because you have to work around it in various different ways, but it is a baseline pain so it is normal.

And what sucks about having more than one chronic pain condition is that it is hard to answer this question isn't it? What is your pain level? Well, where? My neck is a 6. My migraine a 7. My legs a 5. My back a 4. Lets just draw a body and I'll post numbers on it. I don't think in pain levels generally. I track the migraine pain levels for neuros who don't give a crap. But I don't generally go 'well how badly do my legs hurt today?' I just think 'how much can I do today and how can I do it?'

But this is a good chart to have for doctors. I mean the other ones or even the questions they ask simply do not work for chronic pain. 'on a scale to 1 to 10, 10 being the worst pain you have ever felt what is your pain level?' Well, I can tell you right now that what I would say a 10 is, is vastly different than the average person. I vividly recall what I would call a 10 and it is pain that is beyond the ability to move, beyond the ability to speak, just existing within it by the longest second ever known, being trapped within the infinity of it, repeating some mantra like 'please god let it end' even when I don't believe in god. That is my 10. And maybe it is for some other people too, but I expect it isn't for most. And people with chronic pain... our notion of what warrants a 7 or an 8 or a 9 or a 10 becomes vastly skewed by having to endure it day after day and forced to function with it. If I say 'this is a migraine I can function with' this statement might be beyond comprehension to someone who rarely gets migraines and never has to function with them. So not only am I going to rate my pain lower, just from my subjective experience of pain, but I might also be very 'stoic' and not exhibiting and pain behaviors... both these things are things that are less likely to get me any real treatment from a doctor.

Just saying for example 'I have a status migraine that has persisted for five days and is very acute' isn't going to get me actual treatment for a status migraine, oddly enough, because apparently I'm too stupid to know what it is and therefore will get treated like it is just a migraine and be sent on my way... I suppose I should scream, and wail, and freak out next time. Fact is, there won't be a next time. You would have to drag me there screaming and wailing. It doesn't help to use the numbers you think you should use either if you are too stoic... they just expect people in that much pain to act a certain way, even if most of us... contain it tightly. Anyway, this would be why I didn't go to the ER when I got that mysterious persistent numbness in my hand from a status migraine, because they never treat the migraines right to actual abort them... so yeah I got nerve damage from that experience but the fact remains I would have anyway because isn't numbness normal for a migraine and wasn't I all stoic and how would I know how dangerous a status migraine is? And now I can say the nerve pain in my hand currently feels like a 3 and the frustration I feel with inept doctors feels like an 8.

Cool shades... Study Finds That Tinted Specs Offer Migraine Relief- for hyperactivation visually

Not the only study by the way. I have read others but they were some time ago. "The research shows how coloured glasses tuned to each migraine sufferer work by normalizing activity in the brain. The researchers saw specific abnormal brain activity (known as hyperactivation) when migraine sufferers saw intense patterns. The tinted lenses considerably reduced the effect. Jie Huang and colleagues homed in on specific visual stimuli known to trigger migraines. These patterns, high contrast stripes or ‘gratings,’ can give the illusion of shape, colour and movement. These not only trigger migraines but also may cause seizures in those with photosensitive epilepsy." Study Finds That Tinted Specs Offer Migraine Relief

Yeah.. man, do I know about this. Which is why I turned to the Irlens Institute... because my persistent migraine auras cause some serious distortions which give the illusion of movement, where there is none, lines warp and shift, objects contort, my eyes do some wonky things as they try to compensate or focus.

"Before the brain imaging took place, participants were tested and prescribed precision ophthalmic tints (POTs) with an Intuitive Colorimeter. Previous studies have suggested that some 42% of migraine with aura sufferers saw their migraine frequency halved on days when they wore POTs. The researchers used the colorimeter to illuminate text with coloured light, manipulating hue and saturation at constant luminance. For each test participant this gave an optimal hue and saturation (chromaticity) of light that led to the greatest comfort, reducing perceptual distortion. The test subjects then viewed stressful striped patterns illuminated with their optimal coloured light settings to screen for efficacy. The researchers used these readings to generate both effective POTs for each migraine sufferer and also two other pairs of grey and coloured lenses with slightly different properties as controls. 11 patients who frequently suffered from migraine enrolled in the fMRI study. Each patient was paired with a migraine-free control, who was also tested with that patient’s three sets of lenses."

How awesome is that? With the Irlens diagnostic they get you to go through a bunch of different color filters as well to see which works best for your eyes. So I would recommend anyone with who might benefit from this to go to them because how else are you to determine the right color filter? 

"Once in the fMRI machine, the researchers exposed subjects to a range of striped patterns – these had varying likelihood of triggering distortion and discomfort. This study aimed to investigate the effect of the POTs on the cortical activation induced by the stressful pattern in each of the visual areas of the brain. Although patients reported some relief using all of the lenses (by around 40%), the POT lenses had a significant effect when viewing the stressful stripes (70% discomfort reduction). Both control and migraine patients responded similarly to the non-stressful stripe patterns, and in these cases all three lenses made no difference to the result. The POTs specifically suppressed cortical activation for migraine sufferers in visual area V2 of the occipital cortex of the brain, and this POT-suppressed cortical activation was also extended to the other extra-striate visual areas V3, V3A, and V4

“The reduced cortical activation in V2 by the POTs may have been responsible for the POT-induced suppression of the illusions and distortions, considering that V2 neurons but not V1 neurons in macaque monkeys respond to illusory contour stimuli,” Huang suggests.

The cause of these responses to specific visual stimuli is likely to differ from the photophobia (light sensitivity) migraine sufferers often report during an attack."

I am really glad they are looking at research for this. I will tell you when it comes to migraine auras and the issues involved with vision like this... not much can be done about it when preventatives not working, you might have persistent migraine auras, and the fact that even when you do not have a migraine you are still susceptible to this phenomena and it might be triggering migraines. It is a warpy world out there for me and neuros don't much care about that but I sure do which is why I looked into the Irlens institute and I will say when I went for the first test... they ranked me on the severe side for distortions... I will be going for the diagnostic for glasses as soon as  can afford it and honestly think it is the only thing that will help with my vision, given I am not on any preventatives that work and even if they do work for migraines it doesn't mean they will have any affect on the persistent migraine auras.

Now in regards to photosensitivity and florescent lights... nasty ass triggers in themselves people find Thermaspecs to be useful or that tint for glasses or rose tinted glasses like I use. 

Insomnia and Tryptophan for sleep

I have some pretty insane insomnia and while the waking up at night and the unrefreshed sleep are issues they are issues that are somewhat handled by a sleeping pill I think... as in I think my sleep quality is better. They delayed onset insomnia isn't handled by the sleeping pill because it just takes me a long time to fall asleep and it isn't strong enough to knock me out... when you add in pain, well, then it isn't strong enough period because then I have some real sleep issues. You add in vertigo and I'm lucky if I sleep at all. So it is erratic. And it is a real issue when I work because it causes some real sleep deprivation which triggers some long stretches of migraines and well then that is a problem compounding a problem. There are medications that they can prescribe to 'enhance' the sleeping pill... and they enhance it all right... enhance it All Day Long. So while that actually is an option when I'm trying to break a brutal migraine streak like a status migraine it isn't a way to regulate my sleep at all. And while I have been off work... well I just go to sleep when I am tired which is like 3am or 4am which isn't good or normal and when I'm in acute pain it ends up being 6am or later or never.

 So this alternative which is completely a completely natural way to boost serotonin levels which regulate things like mood and sleep is one way to actually help out with this. It was recommended to me. And I have tried melatonin and it did nothing. I think it is totally worth a shot. And I can't remember if I tried it or not. It sounds very familiar. But worth a shot again. And worth mentioning for everyone with FM and sleep issues, or sleep issues due to depression or just crappy sleep.

 Better Brain Chemistry with Tryptophan
"Tryptophan Improves Sleep Quality

The two main biomolecules that are involved in the production of normal sleep—the neurotransmitter serotonin and the hormone melatonin—are both naturally made from tryptophan in the body.²² That makes tryptophan a tremendously valuable supplement for those whose sleep is lacking in either quantity or quality.
Studies dating back to the late 1970s have demonstrated that taking between 1 and 15 grams of tryptophan at bedtime can help you fall sleep.²³ Even doses as little as 250 milligrams were found to increase the quality of sleep by lengthening the amount of time spent in the deepest stage of sleep.²³
During the 1980s, many additional studies demonstrated the benefits of taking 1,000 mg or more of tryptophan at bedtime. Significant improvements were shown in subjective reports of sleepiness such as a decrease in the time to fall asleep, decreased total wakefulness, and an increase in total sleep time.^24-26 These studies showed their most impressive results in people with mild insomnia, or in those with above-average time it takes to fall asleep.²⁷
Those who take tryptophan at bedtime are more likely to wake up with increased alertness, to have clearer thinking, and to perform better on attention-requiring tasks.25,28 Unlike sleeping pill drugs, tryptophan induces sleepiness but does not impair performance or produce dependence, nor does it make it harder to be roused from sleep when necessary.^27,29
One study in older adults demonstrated significant improvements in total sleep time, a decrease in the time to fall asleep and sleep fragmentation or periods of broken sleep following a twice-daily serving of tryptophan-enriched cereal providing 60 milligrams of tryptophan per ounce.9 (A ten-ounce serving of this cereal would thus provide 600 mgof tryptophan.)
Tryptophan may also play a positive role in one of the most dangerous sleep-related complications, obstructive sleep apnea. This condition causes repeated episodes of near-awakening that viciously disrupt sleep cycles and places sufferers at greatly increased risk of developing cardiovascular disease in later life.^30-32
In one study, patients with obstructive sleep apnea who took 2.5 grams of tryptophan at bedtime showed significant improvement from their baseline sleep patterns, with improvements in the amounts of time spent in “rapid eye movement” (REM) sleep, and shortened time to entering rapid eye movement sleep.33 Decreased rapid eye movement sleep is associated with poor next-day alertness and feelings of fatigue, sometimes resulting in involuntary falling asleep during daytime (narcolepsy).^"

My brain hates the sun... has to be a new persistent migraine aura

Every single time I go outside into that bright distorting sunlight I have been experiencing the same phenomena. Now, I must say that brightness is not my friend. Neither is dimness... dimness makes the visual snow much more vivid and thick. Brightness is more distorting. So the air pulses more and lines wobble and shift more. It is damned hard to focus on anything really. And within moments of being outside I get a vivid and bright aura in the center of my vision. It is roughly circular and much like most auras it does that usual rotational motion of color and distortion like a moving colorful bruise, but this one is in the core of my vision and rotates in a circle. Unlike a scintillating scotoma it isn't scintillating really... not multicolored sparkles of light. Just translucent negative bruises of blue and black and indigo light and distorting clearness.

Now I have seen the damned thing in a bright room inside but to a milder degree so maybe not sunlight induced. But it certainly becomes vivid in the sunlight and lasts longer. Or is triggered by it.

And this aura is New. It was not There a few months ago. And it is not an aura that comes before a migraine. I wish I had a nice visual migraine aura again. No, this is a New persistent migraine aura. Like I need another one of those. This is getting crazy.

I was just thinking today when I was outside trying to focus on the house across the street as the lines kept warping and my visual field would flicker and the whole damned area was pulsing that this was just too much distortions. I can't see properly. When I try to focus on one thing my eyes get worse and contort things. It isn't good at all. And that is just the baseline aura phenomena not counting this new thing that happens or all the other add ons that can happen. Or how bad the visual snow can get, which is pretty damn bad right now because I slept so little last night.

Visual Snow: What is visual snow?

People often ask me about visual snow and so I have written an article (Visual Snow: What is this neurological disorder all about? about it to clarify what it is because it is a distinct phenomena from a migraine aura. Now many people, including myself, when I first was told what visual snow was I was told it was part of my persistent migraine aura. My neurologist simply said I have a persistent migraine aura and visual snow is a symptom of that. However, it isn't as simple as all that because visual snow doesn't behave like a migraine aura at all. When researchers did scans of the brain it didn't show as migraine aura like in the least. And while it occurs very often in people with migraines... it occurs in people with migraines with aura and migraines Without aura. So clearly it is something else entirely.

Now the reason someone can see a migraine aura is because seeing is more than the eye, it is the eyes and the brain. And visual snow seems to be a malfunction in the brain where information being processed in not filtering all the visual information received properly and so we see this visual static that other people do not. No idea what is actually going on, but that is how I think about it. Either way, we see this static in the visual field of black and white dots over the entire field moving all the time, which gets more vivid and thick in dim and dark environments.

Eye on Vision
Now people with visual snow often have other symptoms that come with it. Things like photophobia, and halos, and starbursts, and see more floaters than normal, more blue field phenomenon than normal (sparkles in the sky)... even when they just have visual snow and have never had a migraine. And indeed I have many symptoms of visual snow and it is hard to say which are persistent migraine and which are visual snow symptoms so generally I assume they are due to visual snow and only the ones not associated with it persistent migraine... even if they all are lumped under the same category often by neurologists.

So here is the article I wrote and maybe I will add to it the more resources I get, but it helps explain what Visual Snow is: Visual Snow: What is this neurological disorder all about?

Dr. Wolfe suggests Fibromyalgia is a spectrum disorder?

There is good reason for people with FM to be insanely frustrated with having an invisible disability because this one is significantly more invisible... it is Still debated among doctors as to whether it exists or not. What it is really. Is it more than one condition? Is it psychological? Is it just made up? Is it neurological? You would think with all the evidence you wouldn't be foolish enough to say nothing is going on with these patient's brains and bodies... but you'd be wrong, there are still doctors debating this. And that is why there is still this insane stigma of having this syndrome.

Those figures are sharply disputed by those doctors who do not consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate. Further, they warn that Lyrica’s side effects, which include severe weight gain, dizziness and edema, are very real, even if fibromyalgia is not.
But doctors who are skeptical of fibromyalgia say vague complaints of chronic pain do not add up to a disease. No biological tests exist to diagnose fibromyalgia, and the condition cannot be linked to any environmental or biological causes.
The diagnosis of fibromyalgia itself worsens the condition by encouraging people to think of themselves as sick and catalog their pain, said Dr. Nortin Hadler, a rheumatologist and professor of medicine at the University of North Carolina who has written extensively about fibromyalgia.
“These people live under a cloud,” he said. “And the more they seem to be around the medical establishment, the sicker they get.”
Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.
“Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”
In general, fibromyalgia patients complain not just of chronic pain but of many other symptoms, Dr. Wolfe said. A survey of 2,500 fibromyalgia patients published in 2007 by the National Fibromyalgia Association indicated that 63 percent reported suffering from back pain, 40 percent from chronic fatigue syndrome, and 30 percent from ringing in the ears, among other conditions. Many also reported that fibromyalgia interfered with their daily lives, with activities like walking or climbing stairs. Drug Approved. Disease real? New York Times 2008

That was in 2008... but Wolfe recently did a study claiming FM is a spectrum disorder.

"We found strong evidence that fibromyalgia is not a discrete -- yes or no -- disorder. Rather, the symptoms that characterize fibromyalgia exist in a continuum from none to very severe across all people in the population," lead author Wolfe told MedPage Today.
"In those with fibromyalgia there is overwhelming polysymptomatic distress, with severe pain and severe symptoms of all sorts," Wolfe explained.
"One doesn't either have fibromyalgia or not have it," he added.
The publication in 2010 of revised diagnostic criteria for fibromyalgia, eliminating the requirement for tender points and emphasizing the importance of a wide variety of symptoms, made population-based studies of the condition more feasible.
Accordingly, Wolfe and colleagues identified a representative sample of 2,445 German adults who completed questionnaires on health, diet, education, and sociodemographics.
"The most important finding of the study is the idea that fibromyalgia is more of a dimensional disorder than a disease," said Brian Walitt, MD, of Georgetown University in Washington, who was not involved in the study.
"That's a very big departure from how people like to think about fibromyalgia," Walitt told MedPage Today.
Fibromyalgia was assessed on the summary polysymptomatic distress scale, as well as on the scale's individual components of the widespread pain index and the symptom severity score as established in the 2010 criteria.
Those revised criteria required patients to have a score of 7 or higher on the widespread pain index and a symptom severity score of 5 or higher, or a pain index score between 3 and 6 and a symptom severity score of 9 or higher. Either variation led to polysymptomatic distress scores of 12 or higher.
The researchers found that the prevalence of fibromyalgia increased significantly with age, being 0.8% in adults younger than 40, rising to 2.5% for those between 40 and 60 and then to 3% for those older than 60 (P=0.004).
The summary polysymptomatic distress score rose by 0.59 units for each decade of life, while the symptom severity score increased by 0.14 units and the widespread pain index rose by 0.45 units.
The widespread belief that women are more commonly afflicted was not borne out, since the prevalence was similar in women and men, at 2.4% and 1.8%, respectively (P=0.372).
In clinical practice before the revised diagnostic criteria were implemented, up to 90% of patients with fibromyalgia have been women, which may have related to their greater likelihood for having tender points and possibly for seeking medical care for these concerns, the researchers observed.
The analysis also identified a strong correlation (r=0.790) between polysymptomatic distress scores and scores on a somatic symptom questionnaire that reflects how severely a person is distressed by symptoms such as fatigue, unrefreshing sleep, and gastric discomfort.
This was shown by the finding that for a diagnosis of fibromyalgia, the area under the receiver operating curve for the polysymptomatic distress score was 0.996 and was similar, at 0.973, for the somatic symptom score, according to the researchers.
Overall, 53.8% of individuals with fibromyalgia had one or more severe somatic symptoms, while 32.7% had two or more, and 38.5% would qualify as having a physical symptom disorder in the proposed DSM-V.Fibromyalgia not one size fits all disorder

Researchers suggest fibromyalgia is a spectrum disorder

Some Researchers Contend Fibromyalgia Is a Spectrum Disorder

Honestly I don't know what to say about his whole spectrum disorder issue. I get we vary in symptoms and in disability. However, we, ourselves vary over time... I was far different when I was younger than now... especially when you consider our tendency to add in comorbids. And... likewise, sometimes in my life the change in symptoms took me a bit to adapt in coping... so sorry it took an adjustment period and my distress varied... but overall I respond the same to my FM it hasn't become more psychologically burdensome to me. Anyway if you take these freeze frame snap shots of us and line them up it might be seen as a spectrum... but if you put in motion, so does each and every individual as the condition changes over time. Lots of conditions could be viewed like this... is Lupus a spectrum disorder too? Seems bull crappy to me. I have questions upon questions about his whole study frankly.

What is most disturbing to me by far is that by his calculations, and I must specify that, because I've seen that not everyone is too keen on how he came up with this... 38.5% would qualify as having "physical symptom disorder in the proposed DSM-V" Like we didn't see some skeptical researcher grabbing onto that card and waving it around. Like it isn't Deja Vu all over again with a new special label. But people listen to this sort of thing. And this sort of thing takes away from research. I just hope people listen more to the excellent research that has been going on lately than going back to the stone age of FM hell with this sort of thing. And if you don't know what I'm talking about read here Fibromyalgia and chronic pain in danger of being labeled a mental disorder This is the reason why when I have not particularly gotten treatment for FM I have not particularly fought for it... the stigma with it is still there and going strong even in the medical field.

Well this is what he actually says about it to help clarify it, sort of. Fibromyalgia: an interview with Dr Frederick Wolfe, University of Kansas School of Medicine  " In fibromyalgia, studies have shown that the symptoms of fibromyalgia exist on a continuum. From a little pain and a little distress: to a lot of pain and a lot of distress. In fact we call the measures that we use to diagnose fibromyalgia measures of polysymptomatic distress.
This is termed by the UK psychiatrist Simon Wesley who first described illnesses such as chronic fatigue syndrome and fibromyalgia being at the end of a continuum of polysymptomatic distress.
What do we mean by polysymptomatic? Many different symptoms. One might have headaches, but not have all of the symptoms of fibromyalgia.
To put it another way, people with fibromyalgia tend to have a lot of fatigue, a lot sleep disturbance and pain and symptoms and difficulty with thinking and functioning. So it isn’t just distress in one area, but it is polydistress.
You can think of polysymptomatic distress as a condition of humankind which represents both some people who have almost no symptoms and some people who have a major amount of symptoms.
Those who have studied fibromyalgia came up with a cut-point in which they said ‘this is sufficient symptoms to call it fibromyalgia and less than that is not sufficient’.
Although this may be helpful in the clinic, it is scientifically useless because we exist as a continuum." Anyway worth reading the interview as an entire whole. I question this spectrum disorder idea. I question a great deal this whole fibromyalgia measures of polysymptomatic distress. However the interview does add clarity to his concepts.