Fibromyalgia study on #Pain and the #Brain

Once the pain was applied, however, people with fibromyalgia had increased connectivity between part of the somatosensory cortex and the anterior insula. The somatosensory cortex is the area that receives information about physical sensation, such as pain, from the nerves and spinal cord. The anterior insula deals with autonomic information (the automatic functions of your body) and assigns importance to them, thus telling your brain what to pay attention to.
This suggests that in fibromyalgia, our brains assign higher importance and prominence to pain.

It's not that we're "making a big deal" out of it, as in over-reacting. We're subject to a physiological emphasis in our brains.

Think of it like this: It's the difference between when your toddler calls for you and when he shrieks for you; or the difference between hearing a phone ring in the middle of the afternoon and responding calmly vs. it ringing in the middle of the night, yanking you out of sleep in a panic because something must be horribly wrong for someone to call you at that hour.

I can certainly relate to the difference. My fibromyalgia is in remission, but I'm still in significant pain because I've developed arthritis. I remember how fibromyalgia pain seemed insistent and made it difficult or even impossible to focus on anything else. The pain I have now often hurts just as bad, but it's a lot easier for me to tune out.

Researchers also say this study suggests pain, pain catastrophizing, autonomic dysfunction, and pain amplification in us are all linked to this increased connectivity.About |Health

"Has anyone ever told you it seemed like you were obsessed with your pain? It's a fairly common thing for those of us with fibromyalgia to hear. Doctors use the term catastrophizing, meaning that we treat pain as a"About |Health  Well, no, but the term catastrophizing comes up often with FM and chronic pain. I always wonder about that. Am I doing that? Or is it the nature of pain? Perhaps... it is the nature of FM pain.

It is our brain putting some extreme emphasis on the pain. Feel me. Pay attention to me. Focus on me. In other words FM pain is a very demanding and insistent pain. Not easy to ignore.

Oddly enough I find this to be true with flare ups but not so much with my baseline. I notice it. The pain is always there and I am aware of it. But I find migraines to be more persistent, insistent and demanding pain wise. I have a harder time thinking through them and ignoring them. Of course, that might be because I have FM... and it affects how I feel all pain.

Exceptionally long #pain week

A week of acute migraines I have been unable to treat. Along with some unpleasant FM symptoms. And I am tired. Making this week exceptionally long. It is times like this I really regret working. I am drained to my core.

I have not been able to sleep well. Obviously. Not with this level of pain. The way it always goes.

There is no actual solution to this problem and that makes my mood rather low today. Sort of just want to just sleep for a few days to recover. And I am in fact counting the days to my next day off, but that seems an eternity away at this point.

I remind myself there will be bad says. Unfortunately they tend to really cluster together into a brutal bad week. That is just the way it works.

I hope everyone is having a low to moderate pain day. It is difficult to get through the bad days I know. We have to distract ourselves from the pain, but the level of pain makes it difficult to distract from. It is hard to maintain our mood. Hard to sleep. We just have to take it easy. Get through it moment by moment. Know that the high intensity times do not last forever. It will get a little bit better. It is not wrong to relax. It is not wrong to take your time. To relax. I know that working makes thing exceptionally more difficult than we would often like in pain and there really are no easy answers in this case, except to find a solution with your employer to adapt to the workplace, do flextime, work from home or work less hours. And I would say we all should consider such options, but the pain clinic has told me to work part time and I have yet to mention it to my work place because I am stubborn and I feel that they will not likely go for it. I feel that it will bring unnecessary stigma into my work enviroment and I loath that sort of stress. Stigma at work brings a whole level of stress that I really do not welcome on top of coping with the existing pain. So I am just considering my options. I am also dealing with some medication changes and seeing how that works out.

the aura show

The one thing about persistent migraine auras is that they are there migraine or not. It used to be they were this awesome warning system of Impending Doom. As in I would get this atypical migraine aura pretty much an hour before the actual horrific headache portion of the show began. It was perfect for taking my migraine abortive. Talk about knowing exactly when to take your medication when you start going sparkly blind in one eye.

Not so much any more. I have much more diversity now as well. So much more visual auras to go around. And very few of them warn me of Impending Doom. Well, not visual ones anyway. Tingling in the hands or face is pretty much a dead give away though.

But it does vary. There is the halos around light. Where the lighter it is the harder it is to see, because there is fuzzy halo around all light sources. So if someone is standing beside a window... can't bloody well see them. Starbursts often come with halo days... they are when you see something like headlights but the light expands outward like a star. A common aura of mine I get very frequently replaced my regular aura, but is a persistent migraine aura now, it is this broad arch of multi-colored pixels of light in both eyes over about half my vision... fluctuating and pulsing for a good five to eight hours. It expands from a small portion of my vision to a larger portion... sometimes a significant portion. Other times there are dark spots, blind spots, blotches of white, raindrops of color. Another common one that comes on in bright light exposure is a vibrant vortex of light with a blind spot in the center. It reminds me of a flower, with pedals of black, iridescent blue and pink expanding open and closed. It tends to get larger as time passes and is always in the core of my vision.

It would be like if people could see a rainbow... the colors are similarly vibrant and translucent... but fluctuating and pulsing. Overlapping reality. Distorting reality. Another aura I can get is where lines, like corners, patterns, lines all warp and contort... so that makes it difficult to look at things. But you can see how many of these things are difficult to describe. I can say sort of like some fireworks. Sort of like a twisted rainbow. I often wish I could take a picture or video of them just to share the experience. Often wish I could show them to my neurologist as well so they could understand how disruptive and distorting persistent migraine auras actually are... given they light show does not shut down, just changes from day to day.

It is sort of problematic and enchanting. In some sense I am entranced by this light show. In a way it is often Too distracting. It takes away from reality in ways you really don't want it to at times when you need your attention. But sometimes I will just watch the light show because it is that fascinating what my brain is producing... this illusion. Very problematic when you need to see fine detail. Drive. Pay attention. Want to see. Things of that nature. And also very unpredictable with persistent migraine auras... you really have no clue if the phenomena will last all day or a few hours. My vision, in some fashion, is compromised in some way every day at some time.... just depends on Degree.

The Truth

It is not that they cannot handle the truth so much as they do not want the whole truth. They want the story version we tell to make people feel comfortable. A little struggle in there. How we cope. Maybe some treatment in there. Viola the chronic illness life. Not. Quite.

The truth. The whole truth. Has a lot we leave out. Like some days the pain gets the best of us and we wish we could just lay down and never get up. Or our anger a frustrations we face with our limitations. Or the endless guilt we feel being unable to do what we feel we should do. Even discussing the stigma we face is often something we do not discuss all the time. There are many facets of our story, the darker aspects, the more complicated day to day aspects, the grind of the day to day pain... that we tend not to reveal because it makes people uncomfortable.

They are uncomfortable because if they love us, there is nothing they can do to stop the pain and suffering and that makes they feel horrible. We don't want them to feel worse, so we waterdown what we say. It is uncomfortable to friends because if you told them the raw, blunt truth, they would not know what to say back. They would be at a loss of words because they have nothing that compares or relates to that. It is easier to keep it simple, direct and easier for them to understand. So they feel they understand what you go though and feel they can support you.

And hell. for me, lets face it I am not about to be telling people the straight up raw, brutal truth. It is hard for me to admit to the toll pain and illness has on me out loud. Like it makes it so much more real by saying it. Admitting to it just seems weak. It makes me emotional and upset when I think of the impact and try and explain it. And I tend to like to keep the buried in me where I can mask it and not think about it.

Working with Chronic Illness

I had a conversation with a customer a few day ago about chronic illness. He was recently diagnosed with MS and still getting used to it. He was using a Alberta service to get back into the work force fitting his new needs. Because you have to work, to have something to do... long way to retirement and we are still fit enough, capable enough to do so.

I though about that and thought... damn straight. Yes, we have a chronic illness... or more than one as the case may be. And yes it is difficult to cope with and we have to know our limits and moderate our activities. And yes this does factor into what jobs we can actually attain in the first place, and how much work we can actually do. BUT, we have a lot to offer. We are capable in many ways. We get a lot of benefits from working. We have the desire, the motivation, the need often even... so there is no reason we should not get assistance to be placed in a job that would work best for us.

He helped me see it is a better light that I currently was. Which was... tormenting myself to get through the day. Working for the sake of working because apparently I am functional enough to work just enough. Although just enough in my case is part time, so I should not even be working full time. I think that is why my outlook is rather negative because I am exceeding my limits every day and it is beginning to have an impact. One impact seems to be I keep getting sick. Horrible flu. Then this virus that attacked my the casing around the heard. It is because I am tired, stressed and my immune system is suffering.

But this customer reminded me that we are people with health problems, but we are Not those health problems. We have a right to have a life like everyone else does. It is harder to manage in some ways, but we learn to adapt and cope. Work is one of those aspects that we want to attain and have to find something that works around our disability, or with it I should say. I liked the way he looked at it. I believe he is well on his way to coping well.

The main problem is finding that perfect Balance. A job you can sustain that does not make your health worse, and thus you perform well and do not miss work. That is difficult to find. Especially with chronic pain, that seems to just be so present all the time. Not saying it isn't possible, especially since there are some good employers out there. Just finding them is difficult.

I do know if we do not find the right balance we often exceed our coping, by pushing through the pain to work. We cut out other things in order to manage to get to work and then crash at home. Like cut out socializing and leisure activities. Using all your energy to get through work. And this never works for long. You burn out. Trust me. Happened to me often and went on short term leaves over and over and over again as a result. This is precisely what we should Not do. We need the right balance.

Study on #Fibromyalgia and Alcohol

Two pints of beer a day could help to reduce disability in people with chronic pain, according to a new report yesterday.
In a study of 2,239 individuals with chronic widespread pain, the key feature of conditions such as fibromyalgia, those who regularly consumed alcohol had lower levels of disability than those who never or rarely drank.
Those who drank 21 to 35 units of alcohol per week were 67 per cent less likely than non-drinkers to experience disability.
“We cannot say that alcohol consumption causes less disability among people with chronic widespread pain.
“But the observed link warrants further investigation,” said Dr Gary Macfarlane, co-author of the Arthritis Care & Research study, who is professor of epidemiology at the University of Aberdeen. Mirror
Oddly enough this is not news to me, because this study has actually been done before. I read about it a few years back. And I will say the same thing now as I did then... maybe, maybe not but it does not help someone like me because with chronic migraines I am not going to be drinking every day or even moderately. Rarely is when I drink. Although I will say on the occasion I can tolerate alcohol brain wise if I have a few, it does help with pain... and sleep. And both of those are good things.

But not like I recommend this as a solution given all the medication we generally are on. I mean think of our poor livers As Is.

Pain mechanism

I always enjoy a good pain mechanism article. Here are some block quotes in bold from this one. Give it a read.

Over one-third of the world's population suffers from persistent or recurrent pain, costing the American public alone approximately $100 billion each year in health care, compensation, and litigation (1). Chronic pain is associated with conditions such as back injury, migraine headaches, arthritis, herpes zoster, diabetic neuropathy, temporomandibular joint syndrome, and cancer. Many of the currently available pain therapies are either inadequate or cause uncomfortable to deleterious side effects. Chronic pain results not just from the physical insult but also from a combination of physical, emotional, psychological, and social abnormalities. Because many pains persist after an insult is healed, the ongoing pain rather than the injury underlies the patient's disability. Untreated pain may become self-perpetuating because pain has immunosuppressive effects that leave patients susceptible to subsequent diseases. It is now clear that if we can effectively treat the pain despite the underlying cause, it will be possible for patients to regain normal functioning. The key to more successful pain treatment is to understand the mechanisms that generate and maintain chronic pain. Mechanisms of pain

Neuronal Plasticity

Plasticity is a term used to refer to changes that occur in the established nervous system. Changes in neuronal structure; connections between neurons; and alterations in the quantity and properties of neurotransmitters, receptors, and ion channels can ultimately result in increased functional activity of neurons in the pain pathway. Conversely, plasticity can decrease the body's own pain inhibitory systems, resulting ultimately in increased pain. Injury, inflammation, and disease can all cause neuronal plasticity and increased pain by means of increased excitatory or decreased inhibitory mechanisms. Plasticity can result in short-term changes that last minutes to hours, or long-term changes which may be permanent. Mechanisms of pain

Heart Attack... nope, virus

I was minding my own business at work. Almost time for lunch and we were having a pot luck that day... so a lot of good food to be had. Then suddenly Chest Pain. Sort of started with some short jabs in the left then got stronger. My chest got tight. My breathing constricted. The pain radiated to the center and through my back.

Now, let's be honest here, I am not new to chest pains because I have had adverse reactions to triptans that causes erratic heart rates, breathing issues and yes, at times, chest pains either mild, moderate or even on occasion pretty severe intensity.  And I also have fibromyalgia, so with that comes with Costochondritis which is a form of chest pain due to inflamation in the joints of the sternum. And it can be severely painful as it was with me at initial onset when I was working as a baker in university as a summer job... as I continued to do a job that aggravated it it got more and more severe. Took about six months to recover and a lot of anti-inflamatories. I have had it since then, usually when doing some sort of activity with my arms, but never that severely. 

So I am familiar with chest pains, to the point that I generally do nothing when i get them. Sort of 'wait and see' approach. I usually lie down and hold off, hoping they will go away. But this time I had not taken my triptan and it was not the sort of pain associated with Costochondritis. With my recent quitting smoking I thought I might be having an adverse reaction to the patch... conceivable. I found a help line called Health Link which is 811 here, to ask if that was in fact possible and took off the patch just in case. And the nurse who answered listened to my symptoms and told me to call 911. Well that sort of disturbed me. I know, generally, the chest pains I feel are never a good thing to ignore, but usually... well, I do. And still around. So it was worrisome she had that immediate response.

So my boss drove me to the ER. Where I was from 1PM to 8:30PM. And by the way it took me an hour to get in. If it Had been a heart attack... I'd be dead. Just saying. But they were thorough, I'll give them that. The ER in town never has been when I had adverse reactions to triptans, when the pain was quite severe. At this ER they did an EKG, chest X ray and two blood tests. To rule out heart attack and blood clot and chest issues. And what they determined is that it is viral inflammation, due to the location and pressure testing we are looking at Pericarditis, which is a viral infection of the tissue around the heart. Which explains not only the nature of the pain, but some of the funky heart rhythms I had going on initially, which were fine later, but keep going funky every so often. Also had some severe, intense abrupt vertigo at the ER.

However, I am still suspicious about the timing. Pericarditis can be caused by a few things it seems. Including just idiopathic. And man it is painful. I didn't sleep last night. It was excessively painful in the morning because of the fact it is way more painful lying down. I was not able to go into work. Because I am not able to treat it. The only position the body feels decent is leaning forward, which is hardly ideal. Right now in fact, it feels like someone is bloody stabbing me. Hurts to breath. Reminds me a lot of when I smashed my ribs when I took a tumble in the bathroom once. I still wonder if it is due to the smoking patch though. I am thinking of going cold turkey as a result. Which will be difficult, but maybe I will recover faster from this inflammation issue.

I hate how random health issues like this seem to afflict those of us with chronic illnesses. If it is not one thing... it is another.

Day one of my quitting smoking

So i am quitting smoking for some very good reasons. 1) cost. It just is not affordable in these economic times with my spouse working less and the price going up as it has. Just not worth it. I can think of so many better things to waste my money on. And several more important things. 2) Asthma. I have adult onset asthma, so smoking not good. Obviously. And I have tried quitting since this kicked up and it never worked. This year however, we also have a Lot of forest fires in the area Also aggravating my asthma and I realize all this is just so not good on the lungs. Just plain stupid. 3) Migraines with Aura. Now migraines with aura increase your stroke and heart attack risk. And my neuro said I really ought to quit smoking because so does smoking... really stacking the odds against myself here. And not getting any younger. Every migraine I have I wonder could this be the one that blows up my brain? And I wonder because I had an 'incident' neuros debate (as in three neuros cannot make up their minds on it) that was potentially nerve damage from a stroke. And potentially is freaky enough. I mean, I do have the nerve damage. And it did happen during a status migraine. So freaky enough to be wary.

So three very good reasons to say enough of this crap. Just Enough.

Yes, it is hard to quit because when you are in a high amount of pain and can do nothing about it, smoking is like this stress reliever that helps you just relax about the pain you are in. Especially at work. Helps calm me down about being in immense pain when I can do nothing about it.

So to replace that negative coping strategy is going to be hard. Not fun to be in immense pain and unable to treat it. Not fun at all. What I have done today is done relaxation breathing through the cravings... so I might use the same thing for when in a lot of pain.

Either way first day of not smoking sucked balls. I had the craving deep in my stomach. Sort of feels like a ball of anxiety, that says you need something... not food... something, to satisfy you. Like an itch you cannot scratch. And it is uncomfortable. But you can't do anything about it but Want and not Have. All day. Even though I am on the patch. I assume it is because the patch has less nicotine in it than you would normally smoke, so the first days are rough as all hell. I didn't remember the first day being this antsy in the pantsy but it was.

Glad I made it through. But this was a day off, where I could distract myself all day with numerous things. Tomorrow is an extra long day at work where I pull overtime.... and that is going to be stressful and Long. It is going to be my next major challenge in this adventure.

Not even one- is my motto. Because even one will destroy my willpower. The need hits you full force when you have just one. So not even one. Never again.

Migraine Patients Skip Triptans in 40% of Attacks

This is a blog post in response to a study looking into triptan non-compliance. As in why do those silly migraineurs just not take a triptan as soon as they get a migraine like they are told? The Daily Headache: Why People Don’t Take Triptans for Every Migraine Attack

Medscape article:  "Thomas N. Ward, MD, professor of neurology at the Geisel School of Medicine, Dartmouth College, Lebanon, New Hampshire, said, "It's quite clear that they had less disability on the days they take their triptan, which then of course begs the question, why don't they take their triptans on other days? It's complicated, and this study doesn't really address that," he added. "This little bit of behavioral information is very interesting, and obviously needs more study.""

Yes, the study does not indeed address the issue of why patients are behaving this way. And to patients it is pretty damn obvious. An idiot could figure this one out.

1) Rebound headaches: We are explicitly told, over and over and over again, by every neurologist we have ever seen to not overuse triptans (or anything) more than three times a week. Therefore if we get a migraine every single day, we are left with 4 days we simply Cannot use a triptan.

Yes, indeed, if you take a triptan at the first sign of a migraine it has the best chance of working. However, if you cannot take it for every migraine you are left with a tad of an issue. Which migraine to take it for? And how do you determine right away which migraine to take it for? And lets say you just guess that every migraine will be brutal and do as you are told taking it right at the first sign... bravo... still left with 4 days of untreated migraines. Explain the whole non-compliance on those days when it is literally impossible for the person to take a triptan when they are explicitly told not to exceed three times a week?

2) Insurance companies: Are a real joy in the States. I live in Canada so I have not experiences this issue. When I exceeded 9 triptans a month I merely had to get my doc to sign off on it... as a 'risk.' Granted even here insurance companies are getting more douchy. But in the United States they limit triptans to generally 9 a month. No matter how many migraines you get and keep in mind chronic is 15 a month minimum you can only take a maximum of 9 a month. It is possible to take more than one triptan a day if the first does not work, however, why would you do this if you only have 9? And you would be extra cautious of when you used them if you only had a limited amount. Only work days for example. Only migraines during work hours. Only ones that feel debilitating. The system is set up that way. Even if you know taking it right away makes it more effective you are going to hesitate because you Know you have way more migraines than medication and the Next migraine could be much more severe.

I mean it does not take a genius to figure this one out. Not sure what sort of brainiacs they had working on that study but those people need to hit the books.

#fibromyalgia Onset

Onset of Fibromyalgia is an interesting topi. It generally seems to me that most cases seem to be from trauma, illness or accident and sudden onset. In my case there was no such event and it was gradual onset. I suspect it was because I had hypermobility syndrome that already was causing chronic pain and insomnia, and that is comorbid with fibromyalgia. Sort of made for the perfect conditions for another chronic pain condition. However, it also runs in my immediate family as my father also has fibromyalgia. I was diagnosed at age 21 I believe and my father I believe in his mid-thirties. It took me years to actually be diagnosed as I saw my first rheumatologist when I was 16 and he had written in his notes, not that I was aware of this, that I was developing FM. So I assume I had indications of this but due to the gradual onset not enough for him to definitively declare it.

Healio:Of patients with fibromyalgia, about one-fourth reported a precipitating event such as an infection or a physical or emotional trauma, according to recently published study findings.

Researchers retrospectively studied 978 patients with fibromyalgia (FM) seen by the authors as part of the fibromyalgia treatment program at the Mayo Clinic. The Fibromyalgia Impact Questionnaire (FIQ) and the SF-36 were administered to patients, who were also asked about history of the presence or absence of a precipitating trauma or infection and whether symptoms were sudden or gradual at onset. Demographics and social variables, alcohol and tobacco use, opiate and NSAID use and other data were collected and used in a multivariate analysis.
A total of 295 patients reported a precipitating trauma prior to onset of FM, 256 of whom reported a physical trauma or infection and were included in the study. Classification of idiopathic FM was applied to the remaining 683 patients with FM and no precipitating event.
A physical trauma was reported by 203 patients, including motor vehicle accidents, surgery, childbirth, falling and other injuries. Infections included Epstein-Barr virus, Borrelia burgdorferi, varicella zoster, other viral infections and nonspecific viral infection and were reported by 53 patients as precipitating factors.
Sudden onset of symptoms was reported by 87.5% of patients who identified a precipitating trauma or infection compared with 5.9% of patients with idiopathic FM. Time to diagnosis was shortest in the group that reported infection at mean 43.3 months compared with 101 months in the patients with idiopathic FM and in 98.5 months in the group that reported trauma.
Patients who reported physical trauma had worse FIQ scores than other groups, and patients who reported infection reported worse physical functioning on the FIQ; however, adjustments for marital status and disease duration showed no significant differences in FIQ score and patient-reported infection, according to the researchers.
Significant differences were seen between the three groups for the SF-36 physical and mental component summaries and mental health index. Worse SF-36 physical functioning was seen in patients with precipitating infection, but better role emotional and mental health index were seen in the same patients, the researchers found.
According to one of the researchers, the results align with some prior studies, but not all.
“In this study, differences between those in the trauma and idiopathic groups were limited to more sudden onset and worse FIQ physical functioning in the trauma group,” study researcher, Terry H. Oh, MD, told “Those findings contradict previous findings of no difference in FIQ physical functioning between patients with and without traumatic onset but agree with more reduced physical activity in patients with traumatic onset. Similar frequency of precipitating illness or infection has been reported previously in patients with fibromyalgia.” - by Shirley Pulawski


I had a holiday from work this last week. All I accomplished was Netflix and reading, because I am tired. I wanted some down time from the pain or I should say from having to endure the pain while trying to function at work.

I am back to work tomorrow. Right now I have an insanely painful migraine and my mood is low, because I don't want to suffer more as happens when I work. But I must and it makes me moody and sad that my time is up.

As someone with more than a few forms of chronic pain and a few chronic illness I wonder why we never earn our rest. Because, damn, I am tired. I even know the answer but it is of little comfort to me when I feel cruddy, in pain and know I am likely to not get much sleep tonight.

My reality is I am constantly playing a game of survive the pain. Function with the pain. Reality bites. Reality continues to ruin my life because this life I play by the rules pain has laid out for me.

I could say more, but it would be ranty and moody. Because that is the level of pain I am at right now. Where I could not be positive about pain if I tried, not while its claws are digging into me.

Kindle a light of #meaning

I don't completely agree with this quote but it does bring up a very important facet of human existence that is vital when we are chronically ill. We are meaning making machines. We need to create meaning. About the world, our place in it, our purpose and ourselves. Without it the starkness of being is in fact very grim indeed. We flounder without meaning.

And that is exactly what happens when we are first diagnosed or when we make major compromises like stopping working due to chronic illness. We want to know what it all means. We want to know how it affects our lives. What our lives will mean. What our purpose will be. Our self worth can be affected because the meaning we had ascribe to who we were can dramatically shift and we no longer know who we are. What tends to happen is we feel non-productive, non-functional, useless and have no purpose.... a stark state of being because we lost our sense of meaning.

We need to recreate it all over again. With a new sense of purpose. A new sense of self-identity. A new concept of what it is like to be in the world with a chronic illness. And we may have to rebuild this sense of self more than once because life with chronic illness can affect this sense of meaning more than once as we adapt to changes.

It is an important process to go through and no two people will travel the same road doing it. We all find different ways to redefine ourselves. New self-identities and repair our self-worth. New ways to fill the voids in our life to give it purpose. All I know is that it is an important and fundamental experience we must all go through. And I also know that I have done so a few times with major life changes due to my illness.

Thinking about #Acceptance

 Check out: What Helps Me Accept the ‘Chronic’ Nature of My Chronic Illness

These two next posters are things I have felt before when thinking about chronic illness and chronic pain. All the things I could be, but cannot. All I could do, but cannot. What I could have been, but had to compromise for my health.

The conflict we have with accepting chronic illness is the fact it is Chronic. We have to deal with this life long, never ending, condition that will constantly impact our decisions and life. We can accept our limitations and moderate our life, but it takes a lot of adjustments. It takes some time to come to terms with the nature of this being a chronic, forever condition. And every once in a while we like to fool ourselves into believing we can have things we cannot. And every once in a while we have to make compromises for our health that are very difficult to make. It makes acceptance very difficult to hold onto.

And I have a lot of trouble with it to be honest. There are times when I accept it and deal with it. However there are times when I want. I just want things that I have given up. I had ambitions and goals that I know I can no longer have but a part of me craves them. However, I know it is pretty much unhealthy for me to pursue them. I have really been told in a straight forward manner for chronic pain management I cannot do more. I have to do Less. Those are the compromises I am talking about. We give up a lot of our dreams and goals because we have to for our health and that, quite frankly, sucks.

So we do really have to remake ourselves. We have to fill the void with something. Replace that compromise with something else that we are capable of doing that satisfies us. New passions and goals. We need to be fulfilled just like everybody else does. For some this can be part time charity work. Part time employment. Taking care of family. For me I tend to fill the void with things like writing fantasy fiction stories that I self publish as well as raising awareness on this blog as well as my Facebook page, and the Migraineur Misfits page I help admin for. It is something that makes me feel productive and I am passionate about. I also work, but I am told I should be working less but I have not discussed this issue with my employer yet.

In doing these things we recreate a new self-image. It is something that is fundamental to acceptance. As I said, I don't think acceptance is a state we achieve and then just there for good. We can have problems with guilt, regret and other emotions that make us confront our feelings about chronic illness again and again. Then we have to work at achieving acceptance all over again.

I recall it being very difficult in the beginning. I have had chronic illness problems for as long as I can remember. However, when I was very young I used to believe that although they impacted me physically they would never impact me mentally and therefore I could find a job I was passionate about and that would be all I needed. I severely underestimated pain. Not to mention the effects pain has on concentration and memory. And emotions. So it affects Everything eventually. And it did slowly consume every aspect of my life. Chipped away at it. And I struggled, desperately, to hold onto every single facet. And I would compromise, and compromise, and eventually just give in and became a hermit and then the pain exceeded all my coping strategies in the end.... because I continued to work full time. I held onto that, if not the career I had wished. And that desperate need to hold onto work nearly killed me. So i cannot say as my health worsened over the decades I ever truly accepted anything. I fought it. Hard. I may have made hard compromises. I may have cut important things from my life... like socializing, in order to hold onto things like working. But that is not acceptance. However there were times when I was just coping with Firbormyalgia and episodic migraines (not yet chronic migraines) when I was coping well and in undergraduate studies. I was in perfect acceptance then and coping very well. I would say that is the one time in my life I truly dealt with my chronic illness perfectly... before the pain trumped my coping.

And I would say now after taking a course at the pain clinic I am closer to that acceptance again because I understand that chronic pain management requires a lot of factors that all have to be considered. And that it is my job to manage all those factors. Part of that is not exceeding my pain limits and ending back where I started and on leave from work again... and therefore not pushing myself and therefore not working full time, which is not something I am capable of. I accept this. I also accept that it is okay for this to be the case. I used to say society demands of us that we work and suffer... and it does. But we should demand of ourselves that we manage our pain. And not exceed our limits. In other words, we come first and screw what society thinks. Society sees productivity and functionality and a number. We have a disability that needs to be carefully managed. So the pain clinic helped me realize it is acceptable for me to take care of myself. To make myself a priority. And to accept that staying within my limits is not a crime.

F*ck That: A Guided Meditation

Okay, this is funny but be warned there are some swears in it and not for everyone. But... I must say I may just use this for my mindful meditation. lol

#migraines and #work

How to survive a migraine at work article goes into seven tips such a 1)React: take medication ASAP 2)Adapt:minimize light and sound 3)Prioritize: identify crucial tasks to focus on and reschedule rest 4)Hydrate 5)Eat 6)Recover: ease back into work 7) Prevent: plan for elimination.

I think this is grand advixe for an episodic migraineur, but of course if you have episodic migraines you can likely miss work without anyone batting an eye for a migraine.

Those of us with chronic migraines have a more consistent migraine problem to deal with. Migraines leading into migraines leading into migraines. So #7 we have been working of for Decades.

The first problem is talking medication right away. This is true for triptans. The faster you take them the better chance they have of working. However with chronic migraines you have 15 to migraines every day. And you can only take 3 triptans a week generally prescribed 9 a month. So... you have to decide Real quick if that migraine deserves a triptan of if you can just suffer through it. And if you are going to just suffer through it, it means a lot of pain, fatigue and concentration issues affecting you at work. Secondly taking the triptan is not all fun and games, we get side effects from that. Assuming no unpleasant side effects like I get... they also can make you insanely tired and brain dead, which is just awesome at work.

Lets move onto Adapt. I cannot turn the lights down in my office. Or the phone. I can dim the screen but news flash I am always photophobic so migraine or not the screen is dimmed. I really have little control over my environment. And no control over the massive amounts of perfume people wear.

So what about Prioritize? In my office I have appointments I need to do, so I cannot just not do them. But I can prioritize the workload I have to do. Which means my workload will build for the next day. When I also have a migraine. And then I can prioritize again, and my work load will build some more for the next day, when I will also have a migraine. In fact, I actually need to do the same amount of work migraine or not. Somehow without error. Through the pain. With some concentration.

Hydrate? Sure, why not. Helps me not vomit.

Eat? Hell no, because eating means the nausea and diarrhea will get worse and I will spend the entire work day in the bathroom, which I hardly think my boss will like very much. I will have a very light lunch composed of a fiber bar and yogurt. Yum.

Recover? I will not be in the postdrome if the migraine hits at work. It will be migraine all damn day. But if I happen to be in the postdrome at work I cannot ease into work for the same reason I cannot prioritize. I have the same workload every day. The same migraine every day. I cannot create a massive backlog because I have a migraine all the time.

I can see how it would work for episodic migraines... but not so much for chronic migraines, which are a different beast. We just don't get a break and so we have a different set of rules to play by. Mostly those rules are how to function and cope while in a crapton of pain. Crappy rules.

I would honestly love to know how to survive migraines at work. Really. Really. Really survive them when they are there all the freaking time.  In a sense it is all of these tips, when you can do them, but so much More because it is incomplete. We have a larger pain component. More untreated migraines going on. More untreated migraines while trying to function. Knowing we are not functioning at full capacity.

I #laugh because I must not #cry, that is all.

I actually cannot cry because apparently migraines do not like that sort of release of emotion and punish you with a migraine. It is exceptionally rude. I can sort of weep gently though. Which I tend to avoid because if I start I won't stop. 

I sometimes think I laugh just to mask the pain. From myself. From others. So I won't release it. Not that laughter is not good medicine. Not that it does not help us function and mask the pain in the workplace or social functions. Not that it does not psychologically make us feel better. Laughter does a lot of wonderful things to the brain that help us. So seeking out laughter helps with pain in that sense. 

Other times though I fight with the intensity of suffering. I am like full to the very brim of suffering. I feel like I could crack open at any moment and just break down it is so hard to take. And I can't do that to function. I can't move forward that way. I must not cry. So I laugh and mask the pain, the suffering and carry on.

I wonder at what point it us unhealthy to mask the pain. And i wonder because I have been at that point before... and of course, because the stubborn person I am, I continued to mask the pain. It is a skill we seem to master and not led go of that easily. So clearly there is a point when we have to drop the mask, put on our serious faces, expose the pain and say 'Yeah, this pain deal is totally not working for me'.

Study on Exercise, Women and FM

 "Women with fibromyalgia spent, on average, 48% [approximately 8 hours/day] of their waking time in sedentary behaviors," the authors wrote in Arthritis and Rheumatology. "Although they spent, on average, approximately 45 min per day in MVPA [moderate-vigorous physical activity], overall, these activities were not continuous for at least 10 minutes. Only 20.6% of women with fibromyalgia met the weekly PA recommendations whereas 46.3% of controls did."

Further, the investigators found that only 16% of the women with fibromyalgia fulfilled current recommendations for the number of steps per day (at east 10,000/day), compared with 44.7% of the controls.

Women with fibromyalgia presented with higher weight, body mass index, and fat percentage, and lower height than controls

However, only 20.6% of women with fibromyalgia and 46.3% of controls met the 150 min/week of MVPA recommendation when the criterion considered bouts of at least 10 minutes of MVPA at a time of MVPA.Ten continuous minutes of MVPA "is the minimum required to provide some protection against selected chronic diseases and all-cause mortality," the authors note. Women with fibromyalgia engaged in 70 fewer minutes/week of 10-minute MVPA bouts than controls, "which might be considered clinically relevant," they state.

I have no doubt that this is true, but the fact is that exercising and Fibromyalgia is not an easy feat.

First of all I would like to say while working full time I have an impossible time exercising. My pain levels are too high. My fatigue is immense after work. I cannot even comprehend how anyone would find this possible, except to a minor extent on a day off. I have tried for decades while working and never had any success for any amount except minor amounts on days off.

While I am on leaves of absence and on long term leaves it is different. I can Slowly work my way up from ten minutes of exercise every second day to 20 minutes every second day. I tried every day and ended up causes a back injury, so that was counter productive. And the process of working my way up from that 10 min to 20 min is Months of consistent work. It is by no means an easy feat. I know this is not the same for everyone with FM. We all vary in intensity. And I have some issues with exercise due to also have hypermonility syndrome, but I know exercise is damned painful and it doesn't stop being painful, so that is an issue. My workout was aerobic exercise on a stationary bike and also a physio workout to help with developing muscles for the hypermobility syndrome stability. And there was pain every time I exercised. It would hurt right away, quite a bit, then after ten minutes diminish slightly... so I would have to push through the pain for the first ten minutes of damned awful pain. Then for a bit it stabilized to moderate pain, like a numbness settled in. Then the pain would climb again and when it reached a high point I knew I would have to stop... as that would be the cut off point. And I would increase by essentially a minute a week or so.

Now working full times is also painful and damned fatiguing. So you start off at a high point and are asking then to push though more pain to even get going from there. Assuming you are not also like me and have chronic migraines which are also at a high point after work... and trust me that does not agree with exercise.

I know that exercise is one of the major treatments for FM. And it does help with fatigue. Personally I never saw any difference with pain levels as it caused pain. However, it obviously has benefits to us all so a great thing to do. And has benefits with chronic pain conditions, so a great thing to attempt slowly and consistently. Just saying, not as easy as it sounds. Especially when one is already pushing through the pain to just work.


I would like to take this time to thank everyone for participating in the The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association.
It is a great method for raising awareness about this neurological disease and its impact on those of us that live with it.

I hope to see you all next year, same time, same place!

Day 30: #MHAM #MHAMBC Favorite post of the blogathon

Day 26: #MHAM #MHAMBC Hope and hopeless: and begin again

Choose your own hope topic: Please choose your own topic related to living with hope and write about it.

"Living with hope is both feeling like you have a life to live and that there is something worthwhile in the future to live for. When we are hopeless many things fail us to put us in that state. We often say we are existing and not living. Treatment is failing us utterly in the present And we do not foresee any reason to believe that will change. 

Partially this can be blamed on medical professionals. Doctors do not have the experience to handle chronic pain patients. They are not well educated in it, so when it comes to treating it they are extremely limited in imagination. Therefore we need specialists; migraine specialists, neurologists or pain clinics. However, in complicated cases even they can simply 'run out of ideas' and nothing can destroy your hope more than being told they have nothing more they can do and basically they are going to pass the buck to someone else. In Canada this often means an additional Long wait list when you were already on a Long wait list." 


Sharing Hope: Share your favorite blog challenge post from this month, yours or somebody else's. The best way to do this is to quote the first two paragraphs from the post and link to the rest of it. Then tell us why it's your favorite.

I was hoping to pick one of the excellent posts I had read during this great blog for awareness this month, but I have a kicker of a migraine right now... so limited time online for me.

This is my favorite blog post because I explored the reasons we can lose hope, what I think about hope and what I do when I lose hope. Losing hope can happen with chronic pain. I would not say it is inevitable, but it can happen. For a multiple about of reasons and factors, so we have to deal with that state and know what we can do to lift ourselves out of it.

"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association."

Prompts to be found on: Awareness Month page.

Awareness Month page.

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...