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Showing posts from August, 2014

#Fibromyalgia #Cognitive #Symptoms

We are all familiar with fibrofog when it comes to fibromyalgia but fibrofog is really just part of the symptoms associated with the cognitive dysfunction of FM.


Article published online July 21 in Arthritis Care and Research has recently looked more in-depth into the symptoms of cognitive dysfunction and where it affects FM. What they looked at was four components of Executive Function:

Shifting; the ability to shift our attention between tasks.Inhibition; the ability to suppress routine responses.Updating; replacing outdated information with current relevant information.Access; the ability to access long-term memories which is needed for verbal fluency. The study had 30 participants between the ages of 18 and 70 with a control group of 30 women matching in age group. All participants were involves in 90 minutes of testing that measured pain, anxiety, depression, executive function, memory and working memory. Self-evaluation of cognitive impairment was also measured using Functional …

Poem: Surface

Surface

There you see, the smiling me A facade I created, A game I concocted, Just for you. All of you.
Beneath the surface, behind that face, Is a silent scream, And shattered dreams. Just for me. All for me.

I wrote this up for the migraineur misfits Facebook page I help admin for after I had looked through some old blog posts. I set it to an image I took at the Athabasca falls in Jasper National Park... the image has that fantastic reflection of the rocks into the water there. Just like we have this mask we were and underneath that mask we can mask all this pain and suffering.

Now, functionally, it is important that we have a facade to be able to function in society. With chronic pain we know this. We develop this. We all learn and figure out a way that works for us. So there is this duality. What we Show and the Reality. And the fact of the matter is people and society in general do not want to see or know about the reality all the time. There is a reason we do not want to be seen as chronic …

30 Things About My Invisible Illness You May Not Know

Migraine awareness headache Carnival September topic: Invisible Illness Awareness Week 2014: Just One: Share your thoughts on having an invisible illness or respond to the 30 Things meme sponsored by Invisible Illness Awareness Week.

30 Things About My Invisible Illness You May Not Know1. The illness I live with is: Chronic migraines, Fibromyalgia, Hypermobility Syndrome, Hypothyroidism, Asthma

2. I was diagnosed with it in the year: Chronic migraines 21, Fibromyalgia 20, Hypermobility Syndrome 16, Hypothyroidism 30 ish, Asthma 27ish. Hard to really remember all that to be honest.

3. But I had symptoms since: Chronic migraines 12, Fibromyalgia 12, Hypermobility Syndrome since birth, Hypothyroidism 30, Asthma 27

4. The biggest adjustment I’ve had to make is: Sacrifices to careers and work. More than once. Then adjusting to not working at all.

5. Most people assume: The most brutal stigma I have faced is when people assume I don't want to function, don't want to contribute, don't…

Never heard of it

I find myself in a very peculiar position with my health care right now. I am going to a pain clinic and seeing people I have never been exposed to before. I would think that they have come across so many pain patients that nothing would surprise them.

Indeed they are familiar with chronic migraines. They are familiar with fibromyaglia.

They are not familiar at all with what started my pain journey as a child. That seems to be so shrouded in mystery to this day because doctors are not familiar with it. Physiotherapists are not familiar with it. And it is hypermobility syndrome. I then say to them I am very double-jointed. And they go 'oh!' and get all fascinated by all the things I can do. But it is far more than that really since hypermonility syndrome and its more rare genetic versions of EDS Ehlers–Danlos syndrome have to do with a defect in the structure, production, or processing of collagen. The reason I say similar because Hypermobility syndrome has the same exact symp…

Chronically Ill and Mourning

"It's just a constant battle: me against my body; my passions and my dreams and what I want to do with my life, against what I am physically able to do."


You never stop mourning the possibilities you will never have. It is a fact.

I have been chronically ill all my life, essentially, and one would think that would enable me to understand that I have limitations. Instead it just made me have this strong desire to find something I was passionate about I was capable of doing within my limitations. I knew for example, that I had a lot of problems with physical work, with repetitive motions, with standing long hours, with lifting... a lot of restrictions. I wanted to aim for a desk job. I went to university in order to find something I was passionate about. Academically I never had a problem. Finding subjects that interested me was never a problem. Excelling was never a problem, once I figured out how to compensate for the fibrofog issues that is.

I had this belief that I cou…

#Migraine and #facial pain image

This is why when you have a migraine you jaw, your teeth, your eyes and your sinus area can all have pain.

Better?

I am doing a lot for my chronic pain lately. More than I ever have. And that is a good thing but I cannot say that it is making a difference. And there is this fellow that works on contract from the insurance company who phones me all the time who I get the impression is waiting for me to improve. Well, so am I, man, so am I. However, nothing in this chronic pain world is guaranteed is it?

I have been told there are no more medications to try for my migraines and that is why they are pushing the exercise idea so hard. Might as well they said. Might as well try it. I know I am impressed by that.

Yet, I can say it is not getting worse. I know what the worst was. And it is better than that. When I was working that was the worst. And I have less status migraines because I get more sleep. And that has improved my mood. Both good things.

Sometimes though that is the good story. When we are not working. That is not the story this insurance fellow is looking for. Not really the story I am lo…

#Hypomania as an aura in #migraine

Abstract "We report a 19-year-old man presenting to the department of Psychiatry for the evaluation of prominent behavioral symptoms associated with episodic headaches, with normal inter-episodic periods. A diagnosis of classic migraine with hypomanic aura was made. Other possible co-morbid or causative illnesses were excluded and preventive therapy with valproate was started due to the prominent affective symptoms as a part of the migranous aura. ...Recent research into the mechanisms of migraine has identified that the cortical hyperexcitability and an imbalance between neuronal inhibition and excitement mediated by gamma-aminobutyric acid and excitatory amino acids respectively may be the underlying mechanism. The high rate of affective disorders in patients with migraine, association of migraine with an aura comprising of mood symptoms and good response to treatment with mood-stabilisers might give newer insights into the pathophysiology of mood disorder as well…

Long term opiate use and chronic pain #ChronicPain

It is popular these days to be of the opinion that it is dangerous to use opiates foe numerous reasons to treat chronic pain especially in the long term. Partially there is the risk of addiction although clearly not everyone gets addicted. Partially there is some basis that with certain conditions the treatment with opiates can increase pain sensitivity over time. And then with conditions like migraines, specifically, there is always the added issue that treatment with pain killers over and above three times a week could cause rebound headaches and if done too much migraine overuse headaches. So it is a complex set of issues and the stigma around it is pretty intense. I mean, I would be rather insulted if someone were to imply I would get addicted to painkillers automatically.

So this study Pain Patients can have Good Outcomes with Long-Term Opiate Treatments is pretty brave to imply anything against the stigma tide I think. Long-term opioid treatment "can produce positive outc…

Thoughts on Suicide

The suicide of Robin Williams really hit me hard. I suspect because I grew up laughing with him. Perhaps because he hid his depression behind a smile and that makes me sad. Someone once asked me why I make so many jokes about my pain. And I said better than crying. We all learn to mask our suffering and some of us choose make people laugh, to smile, to laugh and then people think you can't be in pain right? Or perhaps losing anyone to suicide makes me sad, when no one should have to feel that way in the end. I always feel a pang in my heart every time we lose someone in the community to suicide which happens all too often. I think there are a world of people who knew him personally and will mourn him.




The stigma with suicide though still runs rampant though and while I have seen so many people understand this death and so many others were caused by depression... others feel they can judge those who die in this way. They say they are selfish. That they should have just got help bef…

Can you see? Poem

I don't think I will be sharing any poetry and images with my poetry on my Facebook page in the near future, so this was the last image I had made. It was just that recently someone had taken the words I had used and put them on their own image, which happens. But then I thought what if they did that with a poem I had created and claimed that as their own? The thought makes me feel icky inside. Took a lot of courage to share any of my poetry publicly to be honest. I have a low self-esteem when it comes to my writing and sort of generally do not share it. So the thought disturbed me, but it is the internet and no way to prevent that sort of thing. I think therefore if I create something I want to share I might just reserve it for my blog as I feel it is a bit safer here.

Can you see?
Can you see me? All of me? Screaming in there? Hidden in there? All of me? Smiling for you? Dancing for you? Can you see me? Struggling inside? Dying inside?
Can you see me? All of me?


 I worked up the image on th…

placebo effect

A lot of people are disturbed by the placebo effect because they believe that it undermines what actual medications are doing. Just believe more and your medication will work! Well, medications do have an effect. They do have to perform better than a placebo. Let's not get carried away with the concept. However, what the placebo effect does show us is that beliefs do have an affect, positively and negatively, on the body. And that is an amazing thing. It is literally proof of mind over matter. If you want proof that meditation will do Something that there is it. However, I am not sure that there had ever been a sustained study on placebo effect. That is to say, I am not sure it would have a lasting effect. But the effect is there. Our beliefs and moods do have an effect on us physically. And that is a lesson I think is good to remember. And maybe it does make a difference psychologically speaking that they always make sleeping pills blue. I don't know. There always is a psycho…

Over the ten minute wall in exercise

Yes I have made it past this ten minute wall in my exercise. For a whole month on the stationary bike all I could do was ten minutes and the muscle fatigue prevented me for getting any farther. It was frustrating. At least the pain clinic then informed me it could take up to six months to attain an hours worth of aerobic exercise.

Well I have breached that wall. On the other side of it is pain unfortunately. At first I noticed I had more stamina and was getting farther distances within in the ten minutes, but still only getting that ten minutes. Then all of a sudden I could surpass the ten minute boundary by more than a bit. 12 minutes. 15 minutes. Today 21 minutes.

Seems awesome progress really on the stamina front. On the pain front not so much. I hurt like hell in the ankles and knees. I knew this 21 minutes today for example might have been a mistake because my knees hurt while I was doing it and now my entire legs ache substantially but quite a bit more in the knees and ankles. T…

The sustained effort of the chronically ill

Being chronically ill does not come with any perks. It is exhausting to live with these symptoms on a daily basis. To have chronic pain and fatigue on a daily basis.



If that were it, that would be enough. That would suck and people would not care much that it sucks for us, but it would suck nonetheless.

But that is not it. Since we have a chronic illness we have to chronically treat it.



Medications- and their side effects. Often including side effects like weight gain and More fatigue. Or More brain fog.Supplements and vitamins. For every illness there is a long list of supplements and vitamins that might help with it. I say might for a reason. They could help, they might not. They might be full of filler and little else since the industry is not very controlled. It is hard to know which ones to take as well because taking them all would mean likely just not bothering eating. And the cost is not something to ignore.Alternative treatments. Take your pick on this one. Acupuncture. Chir…

Neck pain, physio and #migraines

Neck pain is a fairly common symptom of migraines. However, when we have a migraine we also tense from the pain and this can cause pain in the neck and shoulders as well. So some of us can have a lot of neck pain and tension.

There was a time years ago where my neck got so screwed up I had referred pain into my shoulder so that every time I had a migraine my shoulder would hurt. It would hurt and I could not completely rotate it. I was sent to physiotherapy for a few months to get rid of that problem. It was due to the small muscles in that side of the neck being really tense all the time and the other side not as much. I was given a lot of exercises to do for the neck, shoulders and back. Most of which I have forgotten.

The pain clinic has sent me back to physio the difference is that the physio has asked me which areas I would like to work on and I have chosen one of those to be my neck. Reason being my neck always hurts. It can hurt a great deal as well and cause problems with slee…

The Pain Facade

One thing we learn when we have chronic pain fairly early on is the Facade. That we should to some degree mask our pain for many reasons. Some of these valid reasons. Some of these reasons based on exposure to stigma. Some of these reasons based on societal norms.



I have to admit that I am fascinated with the process because of the fact it is so layered. Both necessary and a product of culture and stigma.

In some sense a part of me loathes it. I loath the fact that we hide so much of our pain. Because we don't want to be seen to complain so much. Because others do not want to hear it and when they do they never seem to understand it. Because talking about it is never quite appropriate. Because it seems to be more appropriate that we suffer in silence, but also be Productive. That would be far more appropriate.

Yet I cannot deny that there is a layer of functionality to the facade. We hide our pain from those who love us and who we love because they do not like to see us suffer a…