what an ass

The fate of patients with persistent widespread pain labeled as FM stands in reproach to whatever theory underpins this sophistical treatment act. In the community, the majority of people with persistent widespread pain improve with time12. That is not the fate of those who become patients and are labeled FM. Based on the science that pertains to the regional musculoskeletal disorders, I would suggest that this unhappy fate is not solely a reflection of the intensity of their symptoms or the pervasiveness of the psychosocial factors that confounded their coping so that they chose to be patients in the first place. I would suggest that the treatment acts, dripping with empty promises of elucidation and unproved promises of palliation, are iatrogenic. I would further suggest that these circular treatment acts will exacerbate whatever mood or thought disorder is complicating the plight of these patients13.

NORTIN M. HADLER says "I suspect that few suffering with persistent chronic pain are suffering in silence."... Well, I am buddy. Other than my blog rants, I don't talk about FMS with anyone, because I do not see the point and I do see the negative. I do not seek treatment for it because I do not see the point and I have given up trying. Mostly because of doctors like him. Go figger. Yeah, when your in a bucket load of pain you do want to find someone to help you, to end it, to prevent you from screaming... but in the real world, going to the doctor about chronic pain that is not going to kill you or cripple you, then you might get 'labeled' so it is sometimes seems better if you minimilize it, or suffer in silence, which many of us do. It is like going to the ER with a persistent migraine... expect inferior information and treatment.

There is no more valid a diagnostic label for patients complaining of persistent widespread pain than "overwhelming persistent widespread pain." FM and its sister labels2,14 means no more than that. "Functional somatic syndromes"15 and "medically unexplained symptoms"16 denote the same subset of the woebegone. The former is difficult to define, even by its proponents, and the latter implies that one would be better off if symptoms are medically explicable.

While it is true when you are diagnosed the wide spread pain thing is the focus, along with intense sleeping issues and memory issues. But just because that is the criteria for diagnosis, once other things have been eliminated and if you have other symptoms, does not mean there is not something specific going on. Studies have shown the brain of someone with FMS does some funky things, that the patient feels pain at a higher intensity and for a longer duration, that the body is hyper sensitive to it and other stimulus. I don't care what you call FMS, but it is there. We all are not chronic complainers whining about our pain, and so making it persist simply by will power. And there are treatments that work. Lyrica, for an example. I would not say it works 100%, but I know from my trip to Scotland trekking up hills and walking the royal mile, that it is a drug that makes a big difference. A significant and noticeable difference... as in the pain normally felt right away takes more to be activated, and the pain felt after is significantly diminished. It works better at dampening that overactive pain response in FMS than it does as a migraine preventative, which is why I am technically on it... so much that I would not want to be taken off it and switched to a different migraine preventative because of the positive effects on the FMS. But hey, what do I know... maybe I have some other obscure chronic pain condition that coincidentally was improved by a anti-seizure med.

I am a little sick of all this debate on whether FMS is real or not. It severely affects the mind set of a patient to doubt themselves so, causes more frustration and depression, and less communication. It limits awareness and the quest for effective treatments. And it totally ticks me off. Back in the day, shortly after my diagnosis, I ended up with the chest pain from repetitive movements at work. I went to the ER with it when it got to be severe, because I was young and did not yet know the difference between lung pain, heart pain and chest wall pain. I told the doc I had FMS and thought maybe it was something like that, because rationally, if it was a heart attack it would have killed me weeks prior when it started. He said he did not believe in FMS. To which I replied, 'How about I list the different diagnosis I have had prior to FMS and you take all of those into consideration instead'... but not in so many words. But the point is, I don't care what you call it, as long as you treat it. And that idiot ER doctor did nothing, when it turns out it was something, and something common (comorbid) in people with FMS and a chest x-ray would have done the trick.

If I do not have FMS, I sure as hell would like to know what I do have, because while FMS is a bitch it will not kill me, whereas if you take all the symptoms and look at the other conditions it can be and add in my abnormal blood work, there are some other conditions that could kill me... and that is rather something I would like to know. And if it is all in my head then I need a serious bitch slap to knock me out of whatever crazy ass thing causing me to want chronic pain, chronic insomnia, IBS, fibro fog... Seriously, how crazy would you have to be to will that sort of hell on yourself? That is some self deluded crazy imagination. And a lot of brain power to trick yourself like that. I mean, I get that depression causes muscle pain (because moods affect our neuro chemistry), but if your not depressed or getting off on the negative attention of being ill (which I actually think you could do without actually manifesting an illness), then why and how could you use your sizable mental abilities to trick yourself into feeling like crap on a daily basis, then learning to cope with feeling like crap on a daily basis and then developing a facade so people don't know you feel like crap. If I have that much control over how I feel physically... then I am totally going to wish away my pain, my migraines, wish myself to sleep every night, wish myself to lose twenty pounds and wish to win the lottery, because if it works one way it should work the other way. And obviously if FMS is not real and I am causing myself to feel this way, then clearly my mind body connection is supper strong, like super hero strong, and thus I can, by pure willing, affect my body in amazing ways. So the next time I have a migraine I ought to be able to tell myself that I am not in pain or maybe that I like pain or that what I think is pain is actually just a mild tingly sensation. And when I get a migraine aura, instead of thinking 'ooh, I'm getting a migraine' I will think 'Ooh, I see dead people' or 'Ooh, I see air particles' or 'Ooh, I have the psychic ability to see auras but it hurts my mind'.

Whatever. Pain can be doubted because pain is not a shared experience. Lots of things are subjective. Like because I cannot see this doctors brain, I can really doubt it exists. Any idiot can play devil's advocate. You say you are in pain and I say prove it. You say people with FMS once they get that label make themselves more ill, and I say getting a diagnosis at all is a profound relief. You say god exists and I say he is a societal construct based on cultural ideals. You say the world is composed of tiny atoms and I say show me one?You say the world is real and I say it is all the perceptions of the observer. Doubt everything. The only thing that cannot be doubted is the 'I'. I think therefore I am. And you know what? I am in pain, is pretty hard to doubt as well. By doing so you just shove all the need to prove onto the other person. I say prove FMS does not exist. Prove that pain we feel is not explainable or demonstrable. Maybe by expending a little effort to prove it does not exist, you will find the truth behind the condition, rather than pushing all that responsibility onto your poor patients to prove to you they are actually suffering.

Should rheumatologists treat fibromyalgia patients?

I do believe there are patients who have widespread musculoskeletal pain attributed to a syndrome we call fibromyalgia. However, I do not believe rheumatologists should be the "main caregivers for these patients," as Pisetsky and others have suggested. We simply treat these patients by default. The main reason for my stance is the lack of any creditable evidence supporting fibromyalgia as a rheumatologic condition other than the existence of chronic pain. Although rheumatic diseases are often associated with chronic pain, the converse is not necessarily true. With the burgeoning entrepreneurial specialty masquerading as "pain management," my opinion is that these patients would be best served by those who claim to be pain specialists—if only we could get them to put their needles down long enough to actually treat the pain and the patient.

Dr Pisetsky states FMS is not a rheumatic diseases and therefore not under the realm of what a rheumatologist should be treating. I actually do not disagree. I agree that a rheumatologist is the specialist to be seen to get a FMS diagnosis, but I doubt they are great in the treatment department. The first one I saw, because I presented symptoms of lupus or RA, told me I had 'hypermobility sundrome with chronic soft tissue pain' and that was that. The second one I went to said I had FMS but that I was too young for any medications and that was that. Thanks. So very helpful. While the symdrome shares some symptoms with diseases these specialists do treat I find they flounder with FMS, reluctant to treat pain as pain and wishy washy about what to do. Which leaves the FMS patient pretty much in limbo. There general doctor will often not be able to fill the gap, they may try a few things, but pain management is beyond them. It is the reason I have never had any effective treatment of this syndrome and it has kinda fell to the side in the face of chronic migraines. I think a pain management clinic is the way to go, pretty much the only way to go. So the dude is right, if I had FMS and I was his patient I would totally ditch him.

On the other hand the reply to this article suggests otherwise:

Who else can manage fibromyalgia better than a dedicated and caring rheumatologist? We are the best diagnosticians, bar none. We are better at using drugs than anybody else, even with our hands tied behind our backs. Managing a fibromyalgia patient is like having one's hands tied behind one's back. Furthermore, drugs don't work very well in these patients, and just telling a patient that they must exercise also does not work. As I write this, I realize that in some respects managing a fibromyalgia patient now is somewhat akin to what is was like managing a rheumatoid 35 years ago when I started practice. Maybe that is why I am not resentful in having to take care of these patients.

It has occurred to me that if I were not able to use opioids in the management of fibromyalgia, then I, too, would lose interest in taking care of these patients. Opioids are to fibromyalgia what corticosteroids are to rheumatoid arthritis. We try to avoid them if possible, but when they are necessary—which is often—we should employ them. Maybe, just maybe, Dr Luetkemeyer refuses to give these patients opioids for whatever reason. If that is the case, I could understand his frustration and his decision not to treat these patients.
-- Dr Murray Sokoloff

Now that doc sounds like he would go the course with his patients, FMS or otherwise. I want him at my back any day. He suggests some may not want to treat FMS because it is difficult to treat, and I think that is the very reason... so recipe to follow and no sure results. He points out that RA back in the day had no easy treatments either. So all specialists are not born equal it seems. Pity in small areas we simply cannot pick and choose.

Results from sleep study...

Were rather disapointing. Actually they were good. I was in range for my pauses of breathing, in range for the amount of kicking and movement, and had plenty of oxygen through the night. All very good things, but nothing that helps me with answers or get a better sleep. I have decided from all the muscle jerks at night, I should start taking magnesium to help with it. But I don't know about the rest, the whole waking up not breathing bit... maybe one of the pillows designed to help you breath better when you sleeping. Since I obviously am breathing well most of the time, it must be something not often, so I don't have to worry about it. So I am left with just my usual sleeping disorders really, which are quite enough.

Of all the things I miss, I miss my mind the most

This whole spring migraine season is toally messing me up. In my moments of clarity I realize I am having a great deal of trouble remembering things. A whole lot of things. Whether I took my pills in the morning. Whether I paid the bills this month. The whole month of March is a haze of remembering and forgetting. Obviously when I am having a migraine this is more pronounced. I forget names, how to do simple tasks, important facts of a conversation while having a conversation. Constant migraines pretty much mean the inability to process long term memories, which leads to a whole lot of forgetting on my part. So on the rare occasions when I do not have a migraine I try to think back and I totally come up blank on a great deal. Then you start getting that wierd surreal feeling and feel just out of sorts. I can't say I like it. There are just portions of your life that are just stumbled throung blindly and forgotten. It is no wonder time seems to go by so fast, when you finally are able to pay attention a great deal of time has passed without being remarked upon. And so you get this disjointed perception of the passage of time. I can't even tell how long ago events I do rememver occured, they are too indistict to mark with any clarity.

Arn't we the trippy bunch...

New Migraine awareness blog

Migraine Journey is a new blog
"Last year I compiled, edited and published the book, Migraine Expressions: A Creative Journey through Life with Migraine to try and help dispel the myths of migraine via the words and art of people who live with it." -Betsy Baxter Blondin, Editor

I was one of the contributors to that collection and am happy to see she has created a blog.

It's all in the details...

Managing FMS and chronic migraines is all about balance. Too much of anything is never a good thing. Any change to routine can spell catastrophe. So many details and nuances that it is impossible to always succeed in avoiding triggers, but at least you can do damage control and strive for some sort of balance. But that does not imply stability, because any treatment can fail suddenly and things like life happen. Sometimes I wish I could grasp the patterns behind migraines, because sometimes when you are having a real bad month these migraine free, headache free, no pre-migraine or migraine crash, days comes out of nowhere and it would sure be cool if I knew why. The fact that spring is not kind to me has to do with both FMS and migraines; the light changes hurt both, but also FMS with its whole syndrome symptoms has unexplainable allergies amongst other things, and of course there is the simple amped up pain factor with weather changes in both conditions.

So I am a little concerned that my place of work has changed its hours, so that we are open later on thursdays and fridays and thus in a rotating shift we will be working late those days. It seems so very insignificant, but not to be underestimated. Seeing as I do not sleep, if I can get up later, I will. Which means I will be disrupting my delicate sleep cycle and not have a stable sleep routine. And this is based on my experiences with even mild shift work. In the past, so not a good thing. It is kinda scary really. My migraines have been overtly frequent lately, which is difficult enough without messing around with things. Yet, it is not as though I can say no. While I work for a 'tolerant' employer when I'm not missing work, I have taken two short term leaves in the last four years, and when I did not bounce back into full functioning after my last one it did make my work situation extremely uncomfortable, such that not only do I not want to need such leave again, but I am reluctant to even use my sick days, or suggest I am not in complete control. So using my health as an excuse to not take my turn on the late shift would rub everyone the wrong way. And it is not as though sleeping in does not sound wonderful, cause it does, so at the very least I might get some catch up days on sleep. Mostly I am worried about the migraines, since my poor sleep patterns cause migraines to go out of whack... the whole midnight migraine or morning migraine thing becoming common. This all begin at the end of the month and either I will notice an immediate negative response or it will be one of those slow declines or I will get lucky and this one time a change in routine will not kick me in the butt.

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...