The fear of suffering is far worse than suffering itself... hmmm

To some extent this is true. Suffering sucks. I know a lot about suffering in the moment. I am suffering from a migraine this very moment that I have had continuously for days. I am suffering in the moment from nasty joint and muscle pain that has been painful enough to make it difficult to move and sleep for the last week. If I dwell on it I can remember decades of migraines and decades of fibromyalgia pain. That is a lot of suffering. What has gotten from the past to the present most of the time is not thinking about it. Sometimes what has gotten me through it has been hope that the pain will be less than it was at that moment. Sometimes what got me through it was the knowledge that eventually life would end and therefore at some point suffering would also end. Mostly, it is not thinking about it. Not thinking about how many years of it in the past, not thinking about how much there is in the present and certainly not thinking about there being no specific end date to it in the future (that way lies madness).

So how can my fear of suffering be worse than my actually suffering? Because I know so much about it of course. I know how horrific it can be and I know the darkest places the mind will twist when I cannot escape pain knowing full well that even if the acute pain ends at some point the pain never does. If I allow myself to fear future pain I will be crippled by it. I know this because it has happened before. I know I have survived a long time with chronic pain and I know I have achieved a great deal, despite it, with it, along with those limitations... however you want to look at it. Because I didn't fear it in-itself. It was something I endured, I tolerated, I worked around, I masked. Yet when you work with chronic migraines that are not effectively treated you essentially exceed your pain limits every day and fail to meet everyone's expectations... everyday. You try to control the pain and the suffering for the sake of your job and others and your sanity... and you will never win, but you hope that you can push through it until some amazing medication comes along to make those daily migraines just slightly less frequent, slightly less horrific so you can endure. When you fail to thrive, fail to want to survive... then you fear. What I'm saying is when you ultimately fail to thrive such that you actually choose to end your life, not just contemplate how nice it would be if you stroked out at work... then you fear yourself after failing such an attempt when the pain fog has cleared and sanity has returned. You fear if you were put in the same place again, with the same amount of pain in the future that the suffering would lead to the same state of mind. That no one can endure that amount of suffering indefinitely. It creates this anxiety about your power to tolerate and handle pain in the future. About the very weight of all the pain in the future combined with the intensity of it when faced with working fulltime. I have no choice about the pain... suffering is something we have some control over. Yet if the pain is too acute and you cannot trust yourself to make reasonable choices, then you fear suffering. Yet you cannot fear suffering because then the pain will cripple you. If you have chronic pain it is a fact of life... life being the operative word there. It is true when pain is too acute for too long life seems like just this existence that is a burden and a surreal one at that because pain distorts time and reality in odd ways. While I felt I needed to continue to work, and for various reasons still struggle with the idea of not working, I also feel like I need to survive. In order to control suffering we have to not exceed our limits... we have to change the parameters. Do what we have to in order to want to thrive first and foremost. I'll tell you this... I never feared my ability to cope with pain before. Years of experience and all that. But how can you not have anxiety about it after? I still do a couple years after because my ability to cope was that compromised... and I was still working.

So now that I am not working that fear of suffering is greatly reduced. Well now that my long term has finally been approved anyway. Yet it lingers because I don't know how long it is going to last and I don't know how to resolve the issue. In other words working is stable. Not working never is and is constantly stressful. I'm trying to figure out how to be functional and useful. As well as reduce my suffering.

This picture would normally make me laugh... fear of suffering is worse than suffering itself? As if! But it is a valid point. When you look at it from the perspective of the fear of all the future pain and the inability to cope with it. Or if you are currently deeply struggling with pain while working and barely holding on like I was... then there is a lot of fear there, fear of holding on one more day, fear of getting through it, fear of the Weight of it, fear that it will never end, fear of the very endlessness of it. And, yes, if you have chronic pain and it has caused you to think about suicide or attempt it... directly after and for about a year there is this anxiety about the future and this fear about your ability to cope because you now know you have this limit, this line you can cross, that you did not know about yourself before. At least with past pain, while it suck to know we have compromised so much or given up so much, we have this knowledge that we have also endured so much, conquered so much and achieved so much even with the pain. Yet we all have these fears... and we all have ways to distract ourselves from pain and from thinking about future pain. Ways to cope. I just learned the hard way that I had more to fear about my ability to cope in the long term... or I suppose about holding onto work longer than i should have really.

The power of course is in the present. Present pain is what holds all the power. It is where that acute pain exists and therefore where we get trapped in it and therefore where we get fixated on any fears we have. Pain contorts our reality. Makes it feel like it is all that exists, when we know there is far more to reality than that. Not in the moment though. You have to get through the moment. Any way you can. And then the next. I'm trying the mindful mediation techniques. Gets you out of that anxiety loop. Not out of the pain, but stops all that crap that spins in my mind. I overthink sometimes. Really overthink. Which is why I blog I guess.

Preventing chronic pain study... too late if you have it, obviously, but still interesting


“Cortisol, a hormone produced by the adrenal glands, is sometimes called the 'stress hormone' as it is activated in reaction to stress. Our study shows that a small hippocampal volume is associated with higher cortisol levels, which lead to increased vulnerability to pain and could increase the risk of developing pain chronicity,” explained √Čtienne Vachon-Presseau.
As Dr. Pierre Rainville described, “Our research sheds more light on the neurobiological mechanisms of this important relationship between stress and pain. Whether the result of an accident, illness or surgery, pain is often associated with high levels of stress Our findings are useful in that they open up avenues for people who suffer from pain to find treatments that may decrease its impact and perhaps even prevent chronicity. To complement their medical treatment, pain sufferers can also work on their stress management and fear of pain by getting help from a psychologist and trying relaxation or meditation techniques.”

Is it brilliant that their study is shedding light on the importance between stress and pain or just obvious? I have no idea how suffering pain for long periods of time can be physically stressful... so weird. The body physically responds to that in numerous ways, which then causes us to respond to that in other ways. So yes, obviously learning techniques to manage that is beneficial. There have been numerous studies on that as well.

However, what is interesting is that how some people might be predisposed to developing chronic pain... in this case looking at the size of the hippocampus and levels of cortisol.

"Research summary
This study included 16 patients with chronic back pain and a control group of 18 healthy subjects. The goal was to analyze the relationships between four factors: 1) cortisol levels, which were determined with saliva samples; 2) the assessment of clinical pain reported by patients prior to their brain scan (self-perception of pain); 3) hippocampal volumes measured with anatomical magnetic resonance imaging (MRI); and 4) brain activations assessed with functional MRI (fMRI) following thermal pain stimulations. The results showed that patients with chronic pain generally have higher cortisol levels than healthy individuals. 
Data analysis revealed that patients with a smaller hippocampus have higher cortisol levels and stronger responses to acute pain in a brain region involved in anticipatory anxiety in relation to pain. The response of the brain to the painful procedure during the scan partly reflected the intensity of the patient's current clinical pain condition. These findings support the chronic pain vulnerability model in which people with a smaller hippocampus develop a stronger stress response, which in turn increases their pain and perhaps their risk of suffering from chronic pain. This study also supports stress management interventions as a treatment option for chronic pain sufferers."

Depo-Provera so not fun right now

I seriously think I can have unpleasant side effects for every medication I take... but this one being a form of birth control I rather thought there will be just minor ones that I would likely not even notice. Nope. I actually feel rather unwell now. In a way that I know is due to the shot and I'm not going to go into too much detail here lest the men cringe. Point being when my doc said this month would be mild... she was wrong. It is different. I can say that. Messing around with hormones is never a fun thing. I hope next month will 'sort itself out' because if the next two months are like this... then experiment is a big Fail. Not because symptoms wise I'm having a whole lot of not fun... because that is just being a woman, but it is a whole lot of not fun that isn't normal which is a bit of a concern. It is more that it is supposed to help with the hormonally triggered migraines and something about whatever is going on is erratic and causing instead of a constant hormonally triggered migraine more like a roller coaster one... which by the way isn't better. It is very, very turbulent on the vertigo and nausea side of things. Which might explain why she said weight gain is 'normal' and I have lost weight... not much, but still a few days of being extremely ill will do that and that was before the constant vertigo spins hit me. I really don't feel well and I should be feeling better by now. Going by normal standards going by normal hormonally triggered migraine standards. But I really don't. I honestly really didn't count on the whole vertigo issue. So I'm just going day by day and counting the days.

It might very well be that this will not work for my migraines. It was a shot in the dark... but a shot. You gotta try, right? And it does work for some people. And it still might... it is hormones after all, they take time to adjust.

Study suggests Fibromyalgia might be an immunologic disorder

Study suggests Fibromyalgia might be an immunologic disorder

This study is actually quite interesting. I have seen quite a bit of studies showing what is going on neurologically which support theories that FM is in some way a dysfunction in the automatic nervous system but the ultimate cause of that whether it be auto-immune or a trauma to the nervous system form an accident or a virus... has just been open to debate. This brings the research back to the immune system dysfunction angle... and they suggest we all have this particular problem and if so, then this can be used diagnostically. Either way, another piece of the puzzle if it can be replicated.

Sun Salutation and touching your toes


On the Wii fit the Sun salutation is broken into pieces which is good because no way in hell I can do 6, 7 and 8 due to my back pain... which is why I had to exclude them from my routine. My routine was already sort of FM gimpy friendly and now it is even more gimpy friendly.... I'm thinking of trying to find some sort of book that is made for people with disabilities for yoga.

Anyway it does have the beginning part here where you bend back (which does hurt my back specifically but I still due it thinking it is gentle enough and maybe helps a little) and then bend forward and touch your toes. Now the whole touching your toes thing with FM has been impossible for me... it is like my muscles in my legs are these taunt elastic bands of pain and when I stretch it is just intense pain and no matter how much I stretch... they never, ever loosen. And I try normal stretches to... stretch the pain out or something and it really just doesn't work. I kept this one on my routine because I figured it would be a good stretch overall.

Now... weirdly abruptly since my back has gotten messed up I have been able to touch my toes. My legs still hurt just as much, actually more at night. But the back itself seems to have loosened up right at that spot and bending forward does not hurt, in fact it relieves the pain. And so I can touch my toes by bending there. It's really weird... like the the back, the lower spine has loosened up spontaneously and not from the yoga which I had to stop entirely for awhile due to the back pain issue.

I told my spouse about this interesting anomaly and he's like 'I can touch my toes... see.' and then just folds his six foot six frame and touches his toes like it is easy. He is not flexible I will say first of all. I was like ' What the hell! You suck. I can't touch my toes not because I'm not flexible because I am, I'm double jointed and some of those poses are easy because of it. I can't touch my toes because my muscles are a band of burning pain and is insane when I bend like that. Which is still there but now the joint is just folding. Which is weird. But you still suck.' Nothing like a completely inflexible man to show you how much pain limits your mobility. Dork. lol.

Nevertheless I am impressed he can touch his toes. It is a Long way down for him. He says it is because his arms are so very long. Good point, mine are so very short... but then I am also quite a bit closer to the ground.

Still waiting on long term application... may be poverty stricken by the time I hear from them

Since there have been delays with paperwork due to my employer and then my doctors office my insurance company just recently got all the proper forms for my long term disability application... let alone looked at them. As you can imagine going from two incomes to one income unexpectedly, when I was already dealing with the decrease in income from short term... has left a rather large gap in the budget. A tight budget I can handle, but no income on my part I cannot... just too many bills to account for. Anyway, sure went into the hole this month. Which would either mean using credit to get out of... which I rather abhor the thought of since I don't know what the foreseeable future looks like and I don't spend what I can't pay. (I have been trying to reduce those due to the fact I know our budget was going to decline and have to some extent succeeded). Or ride it out and hope the forms come through, but our overdraft is right on the limit and when my spouse gets paid we will still be over drawn which means not really helping since bills will need to be paid and these insurance things are rather slow. So... we have decided to redeem a small investment. We don't have any really. My spouse has RRSPs through work, which is good, but we had a small one for him for tax purposes a few years back that we will redeem. This will work but I loath the idea of it. I mean I like balancing debts with assets and we are short on the investment side of things.

And I am plagued with the guilt that it is my fault. Because it is. Because I am this smart person with a couple of degrees under her belt who cannot freaking function. And I think at best I can ever only function sporadically because at best these migraines, or the chronic pain beast that has consumed me, can only be tamed sporadically... or not even tamed... endured with the helped of medications and other coping mechanisms but then eventually don't help anymore and it goes crazy like a wild fire and I have to figure it out all over again, but not like any workplace tolerates you while your doctor is trying to help you with medication adjustments... because they don't. So barely functioning (but seeming to function) to not functioning at all... repetitively. And feeling horrific and useless about it. And never feeling like you are ever getting anywhere, because your not. At best you are treading water and not sinking, and then your sinking... but then your not and for a moment you feel victorious because you did not drown but big freaking deal. It is utterly freaking stagnant. And I Hate it. I hate that I can't change this. I have these ideas and dreams on how to change it and maybe I can make something of those. I damn well better, because I can handle this. I know what I can't do, I need a new paradigm.

And I know why I got so depressed about it and felt like I was doing the world a favor by taking myself out of the picture... because I literally feel like I am pulling people down with me. That is a horrible feeling. It is not just guilt. It is that sense that if you didn't exist people would be in a better place. That if you removed yourself from existence, aside from the natural morning process and sentimental mourning, they would be better for it and in fact the world itself would not know the difference and in some sense, when it comes to your workplace, they would actually be relieved. Now I know this is a very skewed look at reality... but it was a very rational argument when I was suicidal. I mean I was in an insane amount of pain, my employer clearly was looking for an excuse to be rid of me and was going to demote me if I missed another day to a role that would be harder for me to cope with and easier for me to be laid of from, I was stressed, I seriously felt felt all of the above, even knowing it would cause pain to those I loved, but my pain was so endless and so intense I could not bear it anymore. I'm not in enough pain or that mindset to do down that road again.. maybe because I know all the signs that led me there or maybe because I'm not working. But I see how it could get there.

Where I am at. Is just sad that I am the cause of these money troubles. Which are stressing me out. And creating anxiety about how I can fix them somehow. And finding ways to do so. Because I made them. I do feel a burden to my spouse who assures me 'everything will be fine'... but money is not his thing. I'm tired of all these problems with my applications and these continuous screw ups from the banks, the doctors office and the late submission by my employer.

Nerve Stimulation to help prevent migraines

"Wearing a nerve stimulator for 20 minutes a day may be a new option for migraine sufferers, according to new research published in the February 6, 2013, online issue of Neurology®, the medical journal of the American Academy of Neurology.
The stimulator is placed on the forehead, and it delivers electrical stimulation to the supraorbital nerve.
For the study, 67 people who had an average of four migraine attacks per month were followed for one month with no treatment. Then they received either the stimulation 20 minutes a day for three months or sham stimulation, where they wore the device but the stimulation given was at levels too low to have any effect.
Those who received the stimulation had fewer days with migraine in the third month of treatment compared to the first month with no treatment. The number of days with migraine decreased from 6.9 days to 4.8 days per month. The number did not change for those who received the sham treatment.
The study also looked at the number of people who had 50 percent or higher reduction in the number of days with migraine in a month. That number was 38 percent for those who had the stimulation compared to 12 percent of those who received the sham treatment." Can Nerve Stimulation Help Prevent Migraine?
I've heard of the ones on the forehead... but also the ones placed on the neck. Interesting idea, certainly I have not had much success with preventatives lately and I think doing both does no harm and the potential benefit sounds great. Sounds better than Botox given I hate the feel of that and didn't work for me anyway.

Migraine with Aura and increased Heart attack risk

We often hear about the increase in stroke risk but not as often the increase in heart attack risk. I have always worried about heart attack risk more than stroke, even though with stroke risk I realize the symptoms would be very hard to tell with migraine with aura unless they felt different to me in some way. However, I have had some surprisingly painful chest pains... either from triptans themselves or sometimes it seems with the migraine itself. Some just worrisome and some scary bad. One time the ER said they were angina and my doctor took my off Imitrex injections... all triptans in fact and put me on toradol pills instead, which then destroyed my digestive system. So that was awesome. My next doctor put me back on triptans, Maxalt and I simply did not protect because triptans work better than anything else, he wasn't willing to put me on painkillers and I could no longer take anti-inflamatories so no real options there. So I simply do not take them more than the three days a week recommended to prevent rebounds and I do not take them more than two days in a row... otherwise, yes, chest pains and heart irregularities and breathing problems. But the chest pains are not as bad as they were with Imitrex or even before that actually. Enough to make me lie down and just... wait it out, pay attention to it and see if it gets as bad as it has been.

The first study showed that migraine with aura is a strong contributor to the development of major cardiovascular events such as heart attack and stroke. The Women’s Health Study involved 27,860 women, 1,435 of whom had migraine with aura. During the 15-year study, there were 1,030 cases of heart attack, stroke or death from a cardiovascular cause. The study examined the relative contribution of various vascular risk factors to these major cardiovascular events.
“After high blood pressure, migraine with aura was the second strongest single contributor to risk of heart attacks and strokes,” said study author Tobias Kurth, MD, ScD, of INSERM, the French National Institute of Health and Medical Research in Bordeaux and Brigham and Women’s Hospital in Boston. Kurth is also a Fellow of the American Academy of Neurology. “It came ahead of diabetes, current smoking, obesity, and family history of early heart disease.”
Kurth cautioned that while people with migraine with aura have an increased risk, it does not mean that everyone with migraine with aura will have a heart attack or stroke. He said people with migraine with aura can reduce their risk in the same ways others can, such as not smoking, keeping blood pressure low and weight down and exercising."Migraine with Aura May Lead to Heart Attack, Blood Clots for Women
That is pretty nuts, eh? That after high blood pressure migraine with aura is the second strongest contributor to risk of heart attack and strokes? There is a history of heart disease on my mother's side I believe so that is one thing to consider for me. Plus I smoke still. My blood pressure however is low normal... or so low I'm amazed I'm alive. So that's one good thing. Weight is a tricky one. Currently I am in the normal range, but medication changes can bump me easily back into overweight and with hypothyrodism it is a bitch to lose it, given it is a bitch to even exercise. Smoking would definitely be something to quit... I just have a hard time when I have no pain management. When I can get a handle on the pain to some degree then I'll have to kick that habit.

Either way if you have migraine with aura that's something you cannot change and if you have a family history of heart disease and strokes, also something you cannot change. These things are just facts that make us aware of things we might want to take preventative measures.

Tracking migraine triggers...


"The study involved 27 people with migraine with aura who reported that bright or flickering light, vigorous exercise, or both, previously triggered an attack. The participants were then exposed to the triggers to see if they caused a headache episode.
Participants either went for an intense run or used an exercise bike for one hour, reaching at least 80 percent of their maximum heart rate. Participants also were exposed to bright, flashing or flickering lights for 30 to 40 minutes. After each session, the participants were monitored for about three hours and asked to report any migraine or migraine with aura symptoms.
The study found that 11 percent of participants reported a migraine with aura after being exposed to light or exercise. Another 11 percent of participants experienced migraines without aura. No participants developed migraine with aura after light exposure alone.
Peter Goadsby, MD, PhD, with the University of California, San Francisco, and a member of the American Academy of Neurology, noted in an accompanying editorial that the study brings up several questions about migraine triggers. “Perhaps rather than triggers, these behaviors are a brain-driven response to the early phases of the migraine itself. Maybe people are driven to exercise as an early symptom and the association with light is simply the sensitivity to light that occurs with the attack itself?”" Migraine Triggers May Not Be As Strong As You Think

There is a pretty good point to this study and that is we use that term 'trigger' pretty loosely sometimes. Like light sensitivity... we are very sensitive to light when we have a migraine and there was a study that suggested we are even sensitive to light because we have migraines, so more photophobic than most. But that is not a trigger per sa. It would be the increased light sensitivity prior to the migraine pain we would notice and that is still part of the migraine attack... the Prodrome stage of the migraine. I could not honestly say whether light itself is a migraine trigger because I am very photophobic all that time and have chronic migraines... so hard to say on that one. Exercise I don't think triggers a migraine, but if I'm getting one... I will get it way faster because as we all know exercise is insanely painful during a migraine. I don't think any of us are driven to exercise... we are just told repeatedly to because it will make us 'feel better'. But exercise I think can definitely be a trigger. Anyway the article suggests that you track for three months... if something is not a trigger for you, then do not worry about it. Which is the advice I would follow. Not every common trigger is going to be a trigger for us all.

Lumbar spinal stenosis? I have no idea what this is but I figure I don't want it

This is the what my doctor is getting having me x-rayed for. Lumbar spinal stenosis due to she speculates arthritis in the back. I guess this causes a narrowing in the spinal canal over time. Commonly not seen until someone is in their 60's... but, hey, not like that has ever excluded me from chronic pain, eh? I like to jump right on board with that. I don't know if she is right but I totally get how she is getting the idea it might be this because like I mentioned when I said this back pain cropped up, it isn't constant like an injury and these are the symptoms of Lumbar spinal stenosis:

"If the spinal cord or nerves become squeezed, symptoms may include:
  • Numbness, weakness, cramping, or pain in the legs, feet, or buttocks. These symptoms get worse when you walk, stand straight, or lean backward. The pain gets better when you sit down or lean forward.
  • Stiffness in the legs and thighs.
  • Low back pain.
  • In severe cases, loss of bladder and bowel control."

And that is the pain I am feeling... it is significantly worse when I walk, rapidly which apparently is common. The pain can apparently be better at some times, which is also true. I do have troubles standing straight with it, especially in the morning and leaning back all the time as that is when i can feel exactly where it hurts and  aggravate it. And the pain diminishes when I sit down and lean forward. So that does sound like it right there. As for other things I have like... cramping, pain in the legs and feet, and stiffness in the legs and thighs... well, yeah, all the time but I have fibromyalgia so if it is from that I sure the hell would not know. The only thing that has gotten worse over the years has been the foot pain which got very severe one year and now is very... delicate and the leg stiffness that I can't stretch out no matter what I do. Again I don't think those are out of the realm of FM land.

Still I know just because something seems like it might fit into one box doesn't mean it does. So we will see what the x-ray says. I mean, I don't like the idea of arthritis in this spot that can so easily limit my ability to walk and I also don't like that the treatment is anti-inflamatories which I cannot take, but there are other option there it seems somewhat. It does seem if it really inhibits mobility they do surgery, but according to that one site it sounds like that just releases the tension on the spine, which is good, because it will help with the refereed pain and symptoms but might not do much for the actual back pain. However, if it isn't this, then maybe it is FM in a new and unpleasant fashion in which case I am at a loss on how to adapt to the inability to walk very far before the pain cripples me, and other times when it is problematic since I have not been able to adjust my walk as you can with say your hip or feet, and stretches don't help... they just make it worse. I would vastly prefer some sort of back injury, like a muscle injury or disc thingy that will just go away of its own accord. That is what my preference is... but I was rather hoping for that in the beginning and no such luck so far.


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...