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Showing posts from July, 2015

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 s…

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…

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 hea…

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 w…

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 cur…

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 l…

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 ra…

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-inflamato…

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 ca…

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…

#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 p…

#reality

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…

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 …

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 ti…

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…

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 carr…

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 t…

#MHAM

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 againChoose 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 an…